a sociology essay

Punishing_Disease_HIV_and_the_Criminalization_of_S..._----_PART_ONE._PUNITIVE_DISEASE_CONTROL.pdf

Home >Social Science homework help >Sociology homework help >a sociology essay

part one

Punitive Disease Control

Hoppe, Trevor. Punishing Disease : HIV and the Criminalization of Sickness, University of California Press, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/miami/detail.action?docID=4820028. Created from miami on 2018-12-02 17:16:38.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

This page intentionally left blank

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

When reports began to emerge in October 2014 that a New York City doctor had fallen ill with Ebola, media outlets whipped themselves into a frenzy. Mayor Bill de Blasio attempted to reassure the public that there was no risk of an Ebola outbreak in the Big Apple at a press con- ference announcing that Dr. Craig Spencer had tested positive for Ebola. “We want to state at the outset—there is no reason for New Yorkers to be alarmed,” de Blasio said. The mayor’s eff orts to assuage the public, however, did not dissuade a fl urry of Twitter commenters, bloggers, and even mainstream media reporters from feeding public hysteria. Predict- ably, the New York City tabloids ran sensational front-page headlines that capitalized on New Yorkers’ fears: “ebola here!” (New York Post) and “ny doc has ebola” (New York Daily News).

Over the next twenty-four hours, reporters began to piece together the timeline of Dr. Spencer’s movements through a combination of news releases from the governor, the New York City Health Department, and even the ride-sharing service Uber. New Yorkers were collectively out- raged by the story that crystallized: not only did Spencer not remain in his apartment under self-quarantine, but he took an Uber to go bowling in Williamsburg! The New York Times—the city’s standard-bearer— ran a short, dry online piece headlined “Can You Get Ebola from a Bowling Ball?”1 The New York Daily News ran a more sensational piece, “New Yorkers, Twitter Users Wonder Why Dr. Craig Spencer Went Bowling,” that featured a collection of more than a dozen angry

chapter 1

Controlling Typhoid Mary

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

18 | Punitive Disease Control

posts from Twitter users condemning the doctor’s actions.2 That article cited a post from Twitter user ericbolling that encapsulated much of the public anger expressed towards Spencer online: “absolutely no sym- pathy for a doctor who knows he’s been in contact w/Ebola, goes bowling, takes 2 subways, has contact with girl, Uber. None.”3 Online comment threads predictably devolved into angry disputes over issues as diverse as gentrifi cation (keywords: uber, Williamsburg) and Ebola transmission pathways (keywords: saliva, bowling ball).

Dr. Spencer’s infection came on the heels of the death of Thomas Eric Duncan, a Liberian man who became ill after traveling to the United States.4 Furious debate centered on Duncan’s fi rst visit to the hospital after he initially developed symptoms. Although he told a nurse he had traveled to Africa, that information was not communicated to other medical staff .5 When his providers asked him if he had been in contact with Ebola patients, he reportedly said no—a statement that was not true. Medical staff discharged him with a prescription for antibiotics, sending him back out into the world, where he might have inadvertently exposed others to the disease.6 Authorities in Liberia were outraged— not with medical providers or their failure to catch his infection earlier, but with Duncan himself. Liberian president Ellen Johnson Sirleaf char- acterized his failure to report contact with Ebola patients as “unpar- donable.”7 Airport offi cials went further, threatening to fi le criminal charges against Duncan should he ever return home.

Across the Hudson River, Nurse Kaci Hickox returned to New Jersey from Sierra Leone, where she had been treating Ebola patients. After being quarantined in New Jersey by health offi cials for two days, she was allowed to return home to Maine, where health offi cials pressured her to quarantine herself.8 She openly defi ed those calls and was photographed biking around her hometown (a fact jokingly cited in a Saturday Night Live skit about her case: “that’s Kaci with an ‘I’—as in I don’t care if I got Ebola, I’m riding my damn bike!”9). Maine governor Paul LePage threatened to take action but hesitated to follow New Jersey’s lead in instituting mandatory twenty-one-day quarantine policies for anyone who had been in contact with Ebola patients after Centers for Disease Control and Prevention (CDC) director Anthony Fauci called such poli- cies “a little bit draconian.”10 Backed by the American Civil Liberties Union, Hickox sued New Jersey for depriving her of her liberty in a case that remains pending.11

The range of responses to these three cases—moral outrage, criminali- zation, and quarantine—illustrates the spectrum of coercive and punitive

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 19

attitudes toward the sick, which have deep roots in public health history. The tension between individual liberty and public health stretches as far back as Typhoid Mary, an Irish immigrant and asymptomatic typhoid carrier who was quarantined in 1907 by New York authorities. For cen- turies, public health offi cials have waged a battle—sometimes against overwhelming odds—to promote and protect the health of populations and to prevent the spread of disease. Controlling the actions of individu- als and communities believed to spread disease has been a core public health strategy, including persuading people to take up practices believed to be “healthy” while discouraging or regulating those actions believed to be “unhealthy.”12 In its battle to preserve population health, a key weapon of public health has been what sociologists refer to as social control.

This chapter traces the history of coercion, persuasion, and regulation in American disease control—fi rst, by examining the rise of coercive practices such as quarantine in the face of deadly and rapidly spreading infectious diseases like the plague; second, by turning to the rise of per- suasion and regulation in the twentieth century as improved sanitation, better nutrition, and the advent of antibiotics and vaccines erased the most horrifi c diseases from the American epidemiological landscape; and third, by revealing how the emergence of new infectious diseases in the late twentieth century such as AIDS and Ebola, as well as new antibiotic- resistant strains of old scourges like tuberculosis, sparked renewed demands for coercive and punitive approaches to disease control.

coercion and punishment in theory and practice

Coercion and punishment are not necessarily the same.13 Health author- ities have an interest in controlling disease and that has at times required restricting the freedom and movement of individuals and even entire communities. In the context of public health law, coercion is defi ned as restricting the liberty of a person or a group of people in the interest of protecting or promoting the public’s health; it does not necessarily imply that the person or group of people has committed an off ense.14 Punishment, on the other hand, is a social response to a person’s wrong- doing; while it necessarily involves coercion (through fi nes, jail time, or other means), it is also specifi cally intended to punish.

Although on paper this distinction between coercion and punishment appears straightforward, in practice it can become muddied. For exam- ple, the Supreme Court has upheld “civil confi nement” programs under

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

20 | Punitive Disease Control

which convicted sex off enders are detained well beyond their court- ordered prison sentences, potentially indefi nitely, as deemed necessary by corrections offi cials. The court has ruled that this continued deten- tion does not violate constitutional guarantees against double jeopardy because the procedures are civil rather than criminal in nature; the pris- oner’s extended detention, the court further reasoned, is therefore not punishment at all because “the commitment determination is made based on a ‘mental abnormality’ or ‘personality disorder’ rather than on one’s criminal intent.”15 The fact that the conditions of civil commit- ment are virtually indistinguishable from prison is treated almost as a coincidence; the programs’ intended function diff erentiates their consti- tutional standing. Public health experts have made similar observations of the state’s power to quarantine: under certain conditions, the depri- vation of liberty imposed through isolation exceeds what is constitu- tionally permitted under the criminal justice system.16

These legal and philosophical distinctions may prove cold comfort to the detained sex off ender or the quarantined person; whatever the state’s intent, the eff ect of detention may well be experienced as punitive. Although the coercive practices critically examined in this chapter may not constitute punishment in the strict, constitutional-law sense of the term, this chapter nonetheless considers historical cases in which public health practice has taken on characteristics of state-sanctioned punishment.17

When and how does coercion turn punitive in public health practice? The hallmark of a punitive campaign is the attribution of blame: punish- ment is meted out by the state against individuals who have been found culpable. Calls to blame someone for their actions are nearly invariably followed by calls for their punishment. This is most obvious in cases of criminalization in which individuals are tried before a court of law, found guilty, and punished accordingly. But criminal justice authorities do not have a monopoly on blame. Although medical problems are supposed to be handled neutrally, many people—including some doctors and public health offi cials—nonetheless ascribe blame to individuals who become sick.18 This chapter examines moments in public health history in which the line between coercion and punishment has been blurred.

quarantine and coercion in public health history

On an otherwise ordinary winter afternoon in 1907, authorities arrived at a Park Avenue home in New York City to take the cook, Mary

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 21

Mallon, into custody. Mallon was accused not of theft or murder but instead of unwittingly spreading typhoid to several members of the households in which she worked as a cook. Authorities had tracked Mallon down by following a trail of “breadcrumbs” left in her wake: a string of typhoid infections and deaths. Antibiotics did not yet exist, and nearly 10 percent of those infected with the disease died.19

Authorities told Mallon that she could have her freedom if she allowed them to remove her gallbladder (where the disease was believed to be festering) or agreed to change her profession. Mallon refused, in large part because she did not believe that she was a carrier of the disease, and, as such, she argued that her detention was unjust. In 1910, Mallon fi nally relented and agreed to stop cooking and work instead as a laun- dress. However, after her release, she became frustrated with the lower wages of laundry workers. Adopting an alias to conceal her widely reported identity, she returned to cooking. In 1915, authorities detained her again after food she had prepared was found to be the source of another outbreak. She spent the next twenty-three years in isolation on North Brother Island at Riverside Hospital, which was largely used to quarantine tuberculosis patients. The facility was notoriously isolating and poorly managed. One historian describes the site in this way:

Five miles up the East River, approximately 1,500 feet east of 140th Street in the South Bronx and, on a bad day, downwind from the city’s garbage dump on Riker’s Island, was the city lazaretto, Riverside Hospital on North Brother Island. Even a century later, when one stands on the rocky shoals of the island, peering into the distance, the city seems remote and inaccessible. The sense of loneliness on North Brother Island is almost palpable. The site had been used as a small hospital for the poor affl icted with contagious diseases since the 1850s. . . . The facilities lacked space, fi nancial resources, adequate medical equipment, and nursing personnel.20

Mallon spent the remainder of her life on North Brother Island’s “rocky shoals,” where she died in 1938. Soon after her fi rst quarantine, a 1908 issue of the Journal of the American Medical Association labeled her “typhoid Mary”—a moniker that would live on in notoriety long after her death.21

Although Mallon’s case is perhaps the most widely reported quaran- tine in public health history, she was hardly the fi rst person in history to be quarantined. The fact that the hospital she called home was located on an island is the relic of a much longer history that begins in medieval Europe during the fourteenth century. The bubonic plague—colloqui- ally known as the Black Death—claimed the lives of millions. (It has

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

22 | Punitive Disease Control

been estimated that 75–200 million Europeans died of the plague between 1346 and 1353.) Scholars believe the epidemic began in central Asia and traveled along trading routes to Western Europe by way of Italian merchants. Sicily was wracked by one of the fi rst known out- breaks in October 1347, followed quickly by Genoa and Venice in Jan- uary 1348. Confronted with this rapidly spreading and poorly under- stood affl iction, offi cials in the Italian city states forced ships from plague-infested countries to remain anchored for a period of time at island isolation stations known as lazarettos. Infected sailors were con- fi ned to hospitals on the island. Sailors and ships were originally con- fi ned for thirty days under a trentino policy; when it was extended to forty days, the policy became known as quarantino.22

On land, infected people were isolated to their homes in cities across Europe. Authorities erected cordons sanitaires, blockades that sectioned off whole neighborhoods to prevent anyone from entering or leaving. Unfortunately, cordons sanitaires were rarely successful because the plague was not primarily spread by human-to-human contact. Instead, most scholars today agree that the disease was spread primarily through rodents infested with a species of fl ea that carried the bacteria Yersinia pestis in its gut; while blockades could restrict the movement of humans, they did little to prevent rodents from freely moving across cities.23 But this fact was not yet known so authorities continued to cordon off homes and entire neighborhoods.

When colonists left Europe for the New World, they brought these practices with them. Quarantine and isolation were widely used from the seventeenth through the nineteenth century as America faced epi- demics of smallpox, yellow fever, cholera and typhus.24 Although the late-eighteenth-century sanitarian movement—which focused on pro- viding clean water, sewage disposal, and hygienic housing—had a pro- found impact on infectious disease long before eff ective medical treat- ments or vaccines were developed, equally important were the more coercive practices of quarantine and isolation.

In the United States, two systems of quarantine gradually emerged. In ports, a system of maritime quarantine stations—eventually man- aged by the federal government—detained and inspected cargo, crew, and immigrants from countries with outbreaks of contagious diseases. In cities and towns, local outbreaks were managed by state and local health offi cials. In the wake of the Industrial Revolution, overcrowding, unsanitary living conditions, and urban poverty led to frequent out- breaks of infectious diseases. Local offi cials ordered the isolation and

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 23

confi nement of infected individuals and suspected carriers to “pest- houses,” hospital wards, or their homes.25 Nineteenth-century public health offi cials adopted other methods that were only slightly less coer- cive: compulsory vaccination, imposing fi nes or confi nement of those who refused, mandatory reporting of infected patients by physicians to disease registries, contact tracing, and other surveillance techniques.

Better nutrition, improved sanitation, and the advent of vaccines and modern medicine began to turn the tide against many widespread infec- tious diseases in the twentieth century. In the wake of these shifts in mortality and morbidity, many public health experts came to view coer- cive strategies for containing epidemics as old-fashioned or even regres- sive. Medical historian Eugenia Tognotti describes the perspective at the turn of the century:

In 1911, the eleventh edition of Encyclopedia Britannica emphasized that “the old sanitary preventive system of detention of ships and men” was “a thing of the past.” At the time, the battle against infectious diseases seemed about to be won, and the old health practices would only be remembered as an archaic scientifi c fallacy. No one expected that within a few years, nations would again be forced to implement emergency measures in response to a tremendous health challenge.26

That challenge came in the form of the devastating infl uenza epidemics that traveled around the world in 1918, claiming the lives of between 20 and 40 million people. In the face of such a rapidly spreading and deadly disease, local municipalities closed churches, schools, and movie theaters and prohibited attendance at funerals and other public gatherings.27

New York City health authorities tried to control the rapidly spread- ing infl uenza outbreak while allowing for a certain amount of freedom of movement.28 Instead of shutting down businesses altogether, the city’s health commissioner, Dr. Royal S. Copeland, implemented stag- gered business hours in an attempt to limit congestion in public places. “Offi ces opened at 8:40 a.m. and closed at 4:30 p.m., while wholesalers started their days earlier, and nontextile manufacturers moved their start time to 9:30.”29 The eff ectiveness of these policies is not known, but historical analyses suggest the death rate may have been slightly mitigated in the Big Apple as compared to its neighbors, Boston and Philadelphia, which did not implement similar policies.30

Confi nement and isolation continued through the fi rst half of the twentieth century, used occasionally during outbreaks of scarlet fever and polio and more frequently for tuberculosis. Until antibiotic treat- ments for tuberculosis were developed in the 1940s, confi nement in a

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

24 | Punitive Disease Control

sanatorium for three to six months was the standard treatment for tuberculosis.31 Even with the development of antibiotics, however, coer- cive practices for containing tuberculosis did not end. Tuberculosis patients who refused treatment were handled especially aggressively. In 1949, for example, Seattle’s Firland Sanatorium established a locked ward intended for the treatment of only the most noncompliant and “recalcitrant” of tuberculosis patients, who were deemed a threat to public health. In practice, however, the facility was used much more widely and ultimately housed over a thousand patients. The vast major- ity of patients quarantined at Firland were poor alcoholics living in one destitute neighborhood, Seattle’s Skid Road, who were detained even if they were noncontagious or adhering to treatment protocols. Medical historian Barron Lerner describes the facility in stark terms:

Known as Ward 6 and located in the old naval brig, the unit was equipped with both locked doors and heavily screened windows. All patients admitted to Ward 6 (most of whom were intoxicated) spent the fi rst 24 hours in one of seven locked cells, which contained only concrete slabs covered by thin mattresses.32

Historical examples like Firland reveal how well-intentioned disease control strategies can turn punitive when disproportionately applied to specifi c marginalized groups. The facility—described as a “model” for others around the country—persisted and even expanded for over a decade despite accusations that the facility had eff ectively institutional- ized quarantine as a form of punishment without due process for poor alcoholics.33

Sexually transmitted infections (STIs) were also the target for a wide array of coercive policies aimed at controlling infectious diseases in United States history. During World War I, states implemented policies in response to public anxiety over “venereal diseases,” such as manda- tory screening to obtain a marriage license and screening of newborns. However, just as Seattle’s tuberculosis program targeted poor alcohol- ics, America’s venereal disease response during World War I reserved the most invasive and punitive policies for commercial sex workers. Authorities believed prostitutes were carriers and repositories for STIs. By March 1918, over thirty-two states had passed laws requiring that individuals arrested for prostitution be screened for STIs.34 Just as in Seattle, this frequently involved medical detention that was not subject to the normal legal safeguards of the criminal justice system. Medical historian Allan Brandt off ers a telling example:

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 25

In San Francisco, the Department of Health provided arrested women with circulars explaining, “You are in quarantine and cannot be released on bail. . . . If you are found ill with venereal disease you will go to the hospital and stay there until found negative. . . . No lawyer or other person can obtain your release.”35

That their detention was done in the name of public health rather than in the name of punishment perversely allowed the state to more severely restrict the liberty of commercial sex workers. Despite the public health label attached to their detention, however, the fact that women engaged in a criminal off ense, prostitution, were singled out for detention by the state suggests a punitive motive.

On the other side of the country, the Virginia State Board of Health provided its offi cers with the authority to detain anyone “reasonably suspected” of carrying an STI, which included “vagrants, prostitutes, keepers, inmates, and frequenters of houses of ill fame, prostitution and assignation, persons not of good fame, persons guilty of fornication, adultery, and lewd and lascivious conduct.”36 Despite such broadly construed categories, however, no eff orts were made during the time to quarantine men for STIs; these policies were systematically enforced against women.

STIs again became the subject of coercive and punitive policies dur- ing World War II. For example, a 1945 Baltimore ordinance gave public health offi cials the power to isolate patients with syphilis or gonorrhea who refused penicillin treatment.37 But just as before, the most aggres- sive tactics were reserved for female sex workers. The Army appointed former Prohibition champion Eliot Ness (whose eff orts to take down Al Capone were fi ctionalized most recently in the HBO series Boardwalk Empire) to lead a campaign against prostitution. Sex workers were once again detained in large numbers, subjected to mandatory STI screening, and placed under quarantine until treated. During this time, estimates suggest that over seven hundred cities and towns closed down their red- light districts. With so many women arrested for sex work, many jails became overcrowded. Ness attempted to ease the strain on local correc- tions facilities by setting up nearly thirty “civilian conservation camps” to house detained prostitutes. These facilities off ered more than just medical testing and treatment. Public health scholar Troy Thompson describes one Florida woman who ended up in such a camp in 1944:

In light of the 1943 Florida laws on prostitution, the police apprehended Jean and gave her an invasive vaginal examination. The court then convicted

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

26 | Punitive Disease Control

her and sent her to one of Florida’s newly converted civilian conservation camps. Jean spent the next fi ve weeks there receiving treatment, job training, and lessons in socially sanctioned morality.38

Despite detaining thousands of prostitutes, the Army’s eff orts failed to eliminate new STI infections among troops. Offi cials lamentingly changed their tune, blaming not prostitutes but “amateur girls—teenag- ers and older women—popularly known as ‘khaki-wackies,’ ‘victory girls,’ and ‘good-time Charlottes.’ ”39

Estimates suggest that more than thirty thousand prostitutes were detained between World War I and World War II. These strident eff orts refl ect a pattern noted by historians: from their inception in the Middle Ages, campaigns to control the spread of infectious disease through coer- cion have frequently targeted particular groups: disfavored immigrant groups, the poor, the “deviant,” and the “disenfranchised.” Typhoid Mary is a telling example not just for her brazen resistance to public health quarantine but also because she was a poor immigrant woman working in service for wealthier families—a woman in a precarious social position, a woman without the resources to contest her detention. Mary Mallon became historical legend not just for her actions, but also because of her denigrated social standing. Other typhoid carriers living at the same time are all but forgotten—carriers such as Frederick Moersch, a German-born immigrant working as a confectioner, who infected more people with typhoid fever than Mallon. Moersch, like Mallon, was con- fi ned on North Brother Island in 1915 but, as a father and “skilled work- man,” was viewed far more favorably by the staff ; after a brief detention, he was allowed to live at home, where the state even arranged for his rent to be paid.40 Despite the similarities in their cases, Moersch was treated far more leniently, and his case is all but unknown to history.

This disparity is not unique to American public health history: public health measures have been enforced in deeply discriminatory ways for centuries, with the harshest, most coercive measures reserved for the most marginalized communities and people. It is in these historical moments that coercion becomes punitive. It would be impossible to review every example of this trend. Instead, fi gure 1 illustrates key examples of coer- cion and discrimination in public health history. In each case listed in fi gure 1, coercive measures intended to combat disease were aimed at marginalized groups. In fact, labeling a person or a community a threat to public health casts the sick as hostile aggressors rather than sympa- thetic victims. During epidemics, fear and stigma of contagion have

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 27

heightened the social exclusion of already-stigmatized groups. Viewed in this light, quarantine comes dangerously close to being a metaphor for the need of elites to protect themselves from the “dangerous” classes.

The policies that this chapter describes did not go uncontested. Coer- cive measures, such as compulsory vaccination programs, mandatory treatment, quarantine, and isolation, often provoked popular resistance and were the subject of many legal challenges. However, these challenges rarely proved successful. Presented with a choice between promoting the freedom of the sick and protecting the health of the masses, U.S. courts have typically deferred to public health authorities and affi rmed their prerogative to use coercive measures to control epidemics.

Perhaps the most important such decision came over a century ago with the Supreme Court’s ruling in Jacobson v. Massachusetts. The case was brought by a Swedish immigrant to the United States, Henning Jacobson, who objected to an order from the Cambridge, Massachu- setts, city council requiring that all adults be vaccinated for smallpox. The penalty for not complying was set by the state at $5 (about $100 today), and there was no set procedure for actually forcing anyone to be vaccinated. Jacobson was already familiar with state vaccination pro- grams, which were in place in his home country of Sweden, but he objected to Cambridge’s program on the grounds that he and his son had experienced adverse reactions to previous inoculations. The court ruled 7–2 against Jacobson, ruling that the state had the power to impose punishment (either a fi ne or imprisonment) for failing to com- ply, but that it could not force anyone to be vaccinated.41

The sweeping power of public health authorities to quarantine and isolate sick people against their will falls within the civil law, but it rivals the power of the criminal justice system to infringe on individual liberties. Moreover, “until relatively recently,” notes medical ethics expert Ronald Bayer, “the protections accorded to defendants in crimi- nal prosecutions have not been extended to those viewed as a threat to the public health.”42 This changed during the 1970s when courts began to reconsider due process claims from mental patients who were facing civil commitment against their wishes. After a federal district court struck down Wisconsin’s commitment law in Lessard v. Smith (1972), other courts began to rule that patients were entitled to the due process protections of the Fourteenth Amendment: the rights to notice, to a fair hearing, to be represented by counsel, to cross-examine witnesses, and to hold the state to a clear and convincing standard of proof. One of the most important doctrines to come out of these decisions was the least

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

figure 1. Coercion and punishment timeline. Design: Jonathan Lefrançois. Illustration: Justin Karas for Pulp & Pixel.

Coercion and Punishment in Modern Public Health History

Following outbreaks of typhus and cholera, nativist sentiments led to quarantines of Jewish immigrants who arrived in New York City, while Italians arriving on the same boat were detained only briefl y; that same year, fi rst-class passengers were confi ned to hotels, while those in steerage consigned to an overcrowded quarantine facility with squalid conditions.1

1892

Milwaukee offi cials forced immigrants and poor residents into a quarantine hospital for smallpox.1894

A San Francisco ordinance required that all Chinese residents of the city receive a dangerous experimental vaccine for plague. Following reports of nine deaths from plague, city offi cials roped off the Chinese quarter, quarantining 25,000 residents and closing Chinese businesses, while explicitly exempting non-Asians. The court overturned both ordinances, ruling that offi cials had acted with “an evil eye and an uneven hand.”2

1900

After smallpox cases were identifi ed in Boston, public health offi cials, with police in tow, forcibly inoculated African Americans and immigrants.3

1902

New York health authorities quarantined Mary Mallon, a poor immigrant woman working as a cook in a private home and carrier of Typhoid. Nicknamed “Typhoid Mary,” Mallon would become synonymous with the spread of infectious disease.

1907

1. Markel, Quarantine! 2. Parmet, “Legal Power and Legal Rights”; Tyson, “Short History of Quarantine.” 3. George J. Annas, Wendy K. Mariner, and Wendy E. Parmet, Pandemic Preparedness: The Need for a Public

Health—Not a Law Enforcement/National Security—Approach (New York: American Civil Liberties Union, 2008).

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

During the 1916 polio epidemic in New York City, health workers conducted door-to-door searches, forcibly removing sick children from their homes, but allowing the children of wealthy families to remain in a separate room in their homes.4

1916

Military offi cials set up civilian conservation camps in the United States to house imprisoned prostitutes, who were rounded up in raids in an unsuccessful effort to squash sexually transmitted infections among American servicemen.

1944

Seattle’s Firland Sanatorium opened its tuberculosis ward, which was used to quarantine over 1,000 mostly alcoholic tuberculosis patients—whether or not they were contagious or compliant with their treatment regimen.

1949

Author Randy Shilts published And the Band Played On, which blamed the spread of HIV in the United States on a promiscuous gay male fl ight attendant referred to as”Patient Zero.”

1987

New York City began a program of directly observed treatment and quarantine in response to an outbreak of tuberculosis, disproportionately detaining poor and homeless patients who were deemed likely to be noncompliant.5

1993

Liberian president Ellen Johnson Sirleaf characterized Thomas Eric Duncan’s failure to report contact with Ebola patients to Texas health care providers as “frankly, unpardonable.” Airport offi cials threatened to fi le criminal charges against Duncan should he ever return home.

2014

4. Guenter B. Risse, “Epidemics and History: Ecological Perspectives and Social Responses,” in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: University of California Press, 1988), 33–66.

5. Gostin, Burris, and Lazzarini, “Law and the Public’s Health”; and M. Rose Gasner, Khin Lay Maw, Gabriel E. Feldman, Paula I. Fujiwara, and Thomas R. Frieden, “The Use of Legal Action in New York City to Ensure Treatment of Tuberculosis,” New England Journal of Medicine 340, no. 5 (1999): 359–66.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

30 | Punitive Disease Control

restrictive alternative doctrine, which holds that patients have the right to be treated in the least restrictive setting that meets their needs.43

controlling chronic disease through education, persuasion, and regulation

At the dawn of the twentieth century, infectious disease claimed more lives than any other cause of death. According to the CDC, the fi ve lead- ing causes of death in the United States in 1900 were44

• infl uenza and pneumonia (202.2 deaths per 100,000 people); • tuberculosis (194.4 deaths per 100,000 people); • gastrointestinal infections (142.7 deaths per 100,000 people); • heart disease (137.4 deaths per 100,000 people); • stroke and other cerebrovascular diseases (106.9 deaths per

100,000 people).

By 1950, however, dying in America had changed drastically. With dra- matic improvements in nutrition, sanitation, and, fi nally, the advent of antibiotics and vaccines, infectious disease was dethroned as the leading cause of death in America and was replaced by heart disease (355.5 deaths per 100,000 people) and cancer (139.8 deaths per 100,000 people).45

This radical shift in mortality in the United States had a profound impact on public health practice. Better nutrition, improved sanitation, vaccines, and antibiotics had eff ectively stomped out diseases like small- pox, polio, and the measles—diseases that once maimed or killed mil- lions. In their place were more complex diseases, such as heart disease and cancer, that were not communicable and that could not be traced to a single bacterial or viral agent. Instead, public health argued that these diseases were linked to specifi c “lifestyle” behaviors such as smoking, drinking alcohol, not getting enough physical exercise, and eating high- calorie foods.

Communicating this new model of disease to the public proved chal- lenging for public health practitioners. For the past century, Americans had gradually come to understand the germ theory of disease, which linked disease and infection to the spread of bacteria and viruses. Public health now had to explain that behaviors, too, could cause disease—but the scientifi c link between them was harder to demonstrate. Exactly how many hamburgers does one need to eat to get fat? To get diabetes?

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 31

How many cigarettes does one need to smoke to get lung cancer? The answers were not black and white.

Smoking proved to be the low-hanging fruit. Although scientists are still debating whether x amount of salt or y amount of saturated fat causes heart disease, there has long been consensus that smoking tobacco causes lung cancer. Beginning in the 1950s, epidemiological studies came out in rapid succession demonstrating a causal relation- ship between smoking and lung cancer. Based on this research, the Sur- geon General’s Advisory Committee on Smoking and Health released its fi rst report on smoking in 1964; the report analyzed over seven thou- sand studies to conclude that smoking directly causes lung cancer, emphysema, and other diseases.46

Once the public health establishment agreed that smoking caused cancer, they needed to fi nd ways to convince the sizable proportion of the American public to give up the habit. That proportion was, indeed, sizable: the CDC estimates that in 1965 42.4 percent of adults in the United States smoked tobacco.47 The mandatory vaccination, quaran- tine, and coercive strategies of yesteryear were obviously not the right tools for the job.

In their place, public health experts developed new strategies for dis- ease control aimed at getting individuals to take care of their own well- being by avoiding “risky” behaviors—in this case, smoking. Authorities turned to two primary strategies to get Americans to stop smoking: regulation and persuasion. First, they regulated tobacco companies’ business practices, the sale of tobacco products, and the locations in which people were allowed to smoke. In 1965, Congress passed the Cigarette Labeling and Advertising Act requiring that all cigarettes sold in the United States carry a warning label advising consumers that “Caution: Cigarette Smoking May Be Hazardous to Your Health.”48 Authorities followed quickly to ban cigarette advertisements on televi- sion and radio in 1969; to limit the ability of smokers to use tobacco in public places beginning in the 1970s; and to increase federal excise taxes on cigarettes beginning in the 1980s.49 Over the next fi fty years, local, state, and federal lawmakers would continue to ratchet up regula- tions on advertising and smoking in public while continuing to increase the cost to consumers through taxation.

Alongside these regulations, public health authorities at all levels began designing education programs and mass media campaigns to per- suade the public to stop smoking. Young people, whose habits were per- ceived to be still malleable, were typically the target of media campaigns

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

32 | Punitive Disease Control

that cast smoking as unhealthy, unsexy, and uncool. Health departments were aided by Federal Communications Commission (FCC) regulations implemented in 1967 that required broadcasters to air one antismoking message for every three cigarette commercials.50 In 1988, California vot- ers approved Proposition 99, which raised taxes on cigarettes by twenty- fi ve cents and required that 20 percent of the tax revenue collected be used to establish a statewide antitobacco education program featuring a mass media campaign.51 Other states followed suit, implementing simi- lar programs that signifi cantly increased the scope and production qual- ity of antitobacco messaging.

The implicit goal of these eff orts was to erode the number of tobacco users in the United States while appearing to support freedom of indi- vidual choice. No one was coerced to stop smoking or quarantined for doing so. Instead, authorities regulated smoking to make it more costly and more diffi cult to do in public places while also persuading Americans that smoking was dangerous and uncool. This combination of strategies at local, state, and national levels had a sizable impact: between 1965 and 2014, the proportion of American adults who smoked tobacco fell from 42.4 percent to 16.8 percent.52

The model of regulation and persuasion proved to be a useful frame- work for public health eff orts in many areas. Health educators per- suaded through advertising campaigns and other interventions designed to change health behaviors by promoting driving with seat belts and helmets, making healthy choices based on the food pyramid, and, more generally, prodding Americans to determine their risk profi le.53 Occa- sionally, public health turned to regulation, enacting policies requiring that people wear seat belts and helmets and that restaurants post the caloric content of their food, and in New York, lobbying for legislation that would prohibit the sale of large sugary drinks.54

Despite success in domains like smoking, public health’s focus on individual health behaviors has troubled some. Opponents criticized these regulations as paternalistic products of a “nanny state,” while pro- ponents pointed to the harmful eff ects of careless, risky health behavior on both the risk-taker’s body and society at large. Instead of debating their legitimacy, social theorists have drawn attention to the ways in which focusing on health behaviors have both echoed and reinforced a general trend in American society toward emphasizing individual respon- sibility.55 By promoting the notion that individuals need to take respon- sibility for their own health as well as the health of the collectivity, pub- lic health has ushered in an era in which the smoker, the drinker, the

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 33

obese person, and the careless driver have become the new “health threat.” Their behavior is not just viewed as unhealthy but is blamed for a wide array of negative consequences, from soaring health care costs to moral decay.

This shifting approach to social control—from coercion to regula- tion and persuasion—was not unique to public health. French social theorist Michel Foucault has shown how approaches to punishment followed a similar path; he tracks the rise of Western penal systems from the eighteenth to the twentieth century to show how governments phased out the public torture and executions of medieval times in favor of building prisons to discipline prisoners.56 The idealized form of this new penal system was the Panopticon, a circular prison in which inmates are always visible to a single guard; under such surveillance, prisoners are trained to believe that they are always being watched and, thus, ought to police their own behavior. In many ways, the Panopticon and the food pyramid, emblematic of this “new public health,” have similar aims: to prod individuals to police their own behavior rather than coerc- ing them to change their ways.57

Experts have noted that morality messages are deeply embedded in modern public health campaigns that blame individuals for engaging in “risky” behaviors, blurring the line between risk and sin.58 While osten- sibly a neutral term, the way in which health authorities attach risk to some practices but not others reveals its moral underpinnings. Many people die in car accidents every year, yet we do not label driving as a risky behavior. Gay men having sex without condoms is described by public health practitioners as risky and labeled as “bareback”; sex between heterosexuals is almost never similarly described by health authorities—except, perhaps, when it is done by the poor (especially African Americans, women, and people receiving public benefi ts). Every step we take in life carries some form of risk, but only certain steps taken by certain people in certain contexts are labeled and controlled as risk.

contagion redux: the punitive turn in modern american disease control

In the early 1970s, scientists reported a cluster of unusual rheumatoid arthritis cases aff ecting children in Lyme, Connecticut. After exploring a number of possible causes, researchers noted that all of the children who were ill lived near wooded areas and that their symptoms typically began during the summer. Although researchers began referring to the

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

34 | Punitive Disease Control

set of symptoms as “Lyme disease,” it would take nearly a decade to conclusively identify the cause: a bacteria, Borrelia burgdorferi, spread by deer-tick bites.59

Not far from Lyme, 221 attendees of a July 1976 American Legion convention in Philadelphia fell ill with strange symptoms: pneumonia and fevers reaching over 107 degrees. Within a month, news outlets were reporting that between six and fourteen men had died of what was collo- quially known as Legionnaires’ disease. The cause was a mystery. Fearing a major outbreak, the Pennsylvania health secretary reportedly “contem- plated seizing control of all hospitals in the state and imposing quaran- tines.”60 Apart from the Legionnaires, however, no new cases emerged; in total, 221 cases were documented, including thirty-four deaths. After a six-month investigation, medical authorities determined the cause: a bac- teria spread through the conference hotel’s air conditioning system.

As the twentieth century wore on, outbreaks of new diseases like Lyme and Legionnaires’ cast doubt on the optimistic claims of the 1950s that modern medicine would forever vanquish infectious disease. Along- side these new, unknown diseases came outbreaks of old scourges such as tuberculosis and the mutation of old microbes into antibiotic-resistant strains such as MRSA (methicillin-resistant Staphylococcus aureus). Across the globe, even more deadly epidemics of diseases such as Ebola, SARS, and avian fl u shook the public confi dence in medicine. Both at home and abroad, inequality appeared to be driving many of these new outbreaks; experts cite local factors such as overcrowding in prisons and homeless shelters and broader patterns such as poverty, malnutrition, homelessness, and HIV infection, which increase susceptibility to dis- ease.61 With global travel and migration reaching historic levels, experts feared that the epidemics of the future would quickly become global.

In the United States, this resurgence in infectious disease coincided with the rise of neoliberalism (commonly defi ned as the twentieth-cen- tury emphasis on laissez-faire economic policies, namely through dereg- ulation, free trade, and privatization) in the Reagan-Thatcher years and the growing infl uence of religious conservatism, or the New Right.62 Evangelical conservatives played to Americans’ fear and ignorance of diseases like HIV, blaming those they deemed responsible for the spread of disease. Public health was not immune to these politics, especially as it had spent the last several decades promoting the idea that individuals and their risky health behaviors were to blame for modern epidemics. Given this context, public health offi cials not only returned to the restrictive measures that had been used to control the spread of infec-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 35

tious disease historically, but they also developed new, sometimes more coercive laws and practices. This was most apparent in the response to two of the most common diseases of the late twentieth century: tuber- culosis and HIV.

Tuberculosis (TB) is a disease primarily aff ecting the lungs and is caused by a range of bacteria, most commonly Mycobacterium tuberculosis. Humans have suff ered from the disease throughout much of documented history, with evidence of the disease stretching back to the spines of Egyp- tian mummies.63 Most people who are infected with TB are asympto- matic—so-called latent carriers—and cannot transmit the disease. How- ever, about 10 percent of infections progress to what is known as active TB, which is extremely contagious via coughing or sneezing; characteristic symptoms of active TB include blood-tinged sputum, fever, night sweats, and weight loss (giving the disease its historic nickname, consumption). Left untreated, more than half of people with active TB die.

As noted earlier in the chapter, TB was once a leading cause of death in the United States, second only to infl uenza and pneumonia. The prognosis for infected patients remained poor until streptomycin was discovered in 1946. This new treatment, along with other public health eff orts to control the disease, helped to dramatically reduce the number of new TB cases by the 1950s. However, driven in part by rising rates of drug use, poverty, and homelessness, several U.S. cities saw new TB outbreaks in 1985 that disproportionately impacted racial minorities, including Latinos, African Americans, and Asians.64 Public health authorities were especially troubled because many new TB cases were resistant to standard antibiotic treatments and thus harder to treat and more deadly.

Rather than citing a lack of access to aff ordable housing or poverty as the forces behind these new outbreaks, some in public health blamed these new resistant cases instead on patients who failed to complete the six- to eight-month treatment protocol required for curing TB. Most patients who are otherwise healthy can be successfully treated and cured of the disease.65 Most patients do take their medication during the acute phase of their illness when they feel sick, but many drop out during the post-acute phase when they feel relatively healthy. In New York City, for example, only 53 percent of all patients completed treatment during these outbreaks (although completion rates have risen to over 90 percent more recently).66 While these patients may feel healthy and are no longer contagious, their TB infection could come back. Worse yet, it could return as a newly mutated strain resistant to antibiotic treatments.67

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

36 | Punitive Disease Control

To ensure that patients followed through with a lengthy treatment pro- tocol, scientists pioneered direct observed therapy (commonly known as DOT) in Madras, India, and Hong Kong in the 1960s.68 These programs typically require a patient to routinely visit a health care provider who can directly observe the patient swallowing the antibiotic treatment. Ini- tially, DOT was mandated only for patients deemed likely to be noncom- pliant. But in practice, this often meant that doctors disproportionately targeted the poor and homeless as they were most likely to be viewed as potential health threats. For these reasons, some experts suggested that all patients treated for tuberculosis should be required to undergo manda- tory DOT. However, this proposal was ultimately rejected as too broad and too intrusive on patients’ civil liberties. Moreover, blanket DOT pro- grams turned out to be unnecessary; most patients accept DOT and com- plete treatment, especially when their alternative is quarantine.69

Faced with the new outbreaks of TB, the New York City Public Health Department revised its health code to allow coercive actions to protect against these threats to public health. Under the new regula- tions, the health commissioner could order compulsory examinations for patients suspected of having tuberculosis, require that patients con- tinue treatment until cured, order mandatory treatment under direct observation, and issue orders for involuntary detention of those deemed unwilling or unable to comply with treatment.70 The city’s new regula- tions proved controversial. Critics charged that the requirement that patients undergo treatment until cured expanded the notion of a health threat beyond just those individuals with active TB who were conta- gious. Under the new rules, individuals with latent infections who were not presently contagious but might at some point become contagious could be labeled a health threat and detained accordingly. Such a broad policy could set the stage for a repeat of Seattle’s previously discussed approach to tuberculosis in 1949 that ended up systematically quaran- tining poor alcoholics. Further, the city was not required to provide social supports, such as transportation and housing for homeless patients, that would enable them to complete treatment. Finally, the ordinance violated the least-restrictive doctrine by not requiring the city to explore less restrictive measures before issuing confi nement orders.

In actual practice, the city did attempt to remove barriers to nonad- herence by providing housing, bus tokens, and incentive payments for patients undergoing DOT. Moreover, department policy was to use less restrictive measures before restrictions were imposed—for example, to off er voluntary DOT before imposing mandatory treatment, and DOT

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 37

before confi nement.71 This led the authors of a study of the program in its fi rst two years to conclude, “For most patients with tuberculosis, even those with severe social problems, completion of treatment can usually be achieved without regulatory intervention.”72 Although involuntary confi nement was imposed on only 2 percent of the eight thousand tuber- culosis patients, the actual number of patients subjected to involuntary confi nement was notable: between 1993 and 1995, New York City con- fi ned more than one hundred patients who refused voluntary treatment, most of them confi ned to the secure ward of a hospital for six months.73

At nearly the same time that tuberculosis outbreaks were being reported, health authorities also began to report cases of a new deadly disease that seemed to be primarily aff ecting homosexuals. In June 1981, the CDC fi rst reported a cluster of unusual cases of Pneumocystis pneu- monia that appeared to be killing otherwise healthy young gay men.74 The outbreak coincided with the election of Ronald Reagan and the ascendance of the New Right, a coalition of conservative politicians and the Christian conservatives who would become a formidable force in American politics. Health authorities were fl ummoxed by the new dis- ease, and Americans were increasingly terrifi ed. Conservatives capital- ized on American’s fear and ignorance of the disease, which they her- alded as a symbol of America’s moral decline. Medical authorities originally called the disease G.R.I.D. (gay-related immunodefi ciency), a grave misstep that facilitated the New Right’s characterization of the disease as a gay plague—divine retribution for sexual sin, or in the words of Jerry Falwell, “the wrath of a just God against homosexuals.”75

Combining racism, homophobia, and xenophobia, commentators began to speak of the 4-H risk groups: homosexuals, heroin addicts, hemophiliacs, and Haitians. However, the New Right focused most of its ire on the perceived transgressions of gay men. Political pundits fed the homophobia of a terrifi ed public with doomsday proclamations about the plague imposed on general public by the hedonistic lifestyles of drug addicts and homosexuals. A 1987 Gallup Poll showed that, like conservative religious leaders, 43 percent of Americans said that AIDS was a punishment for moral decline.76 In communities across the coun- try, tensions were high. When a Florida couple successfully sued the DeSoto County School District to allow their three hemophiliac, HIV- positive sons to attend school, they found their house had burned down, forcing them to leave town.77

By the mid-1980s conservative politicians and religious leaders, such as Jesse Helms and Pat Robertson, argued for draconian and excessively

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

38 | Punitive Disease Control

coercive measures: mandatory testing of all those “at risk” of spreading the disease, branding people with AIDS with a visible tattoo, and quar- antine and criminal incarceration of “recalcitrant” AIDS carriers.78 In their call for coercion, conservatives were joined by members of a pub- lic increasingly frightened by the spread of an incurable disease. Public opinion polls conducted in 1985 and 1986 showed that between 28 and 51 percent of respondents agreed that “people with AIDS should be put into quarantine to keep them away from the general public.”79

At the center of many public debates was a murky fi gure blamed for the disease’s rapid spread in gay communities. “Patient Zero,” as he was called, was a French-Canadian, gay male air steward who report- edly had infected numerous of his partners in his travels. Although the CDC did interview the man and strongly urged him to stop having sex, scientists and health authorities did not, in fact, suspect him of being the source of HIV in the United States. But he made for a great story for San Francisco journalist Randy Shilts, who was putting the fi nishing touches on his 1987 book chronicling the government’s lackluster response to AIDS, And the Band Played On. His publisher worried that the book would fall fl at and pressured Shilts to fi nd a way to make it more sensa- tional:

[Shilts’s publisher] described the initial dismal prospects for And the Band Played On that motivated them to fi nd a more creative way to promote the book. The solution was to use Patient Zero and present him as the hand- some, promiscuous French-Canadian airline steward who may have brought AIDS to America. This was the pathway to the bestseller list, and it worked.

Just as nearly a century before Mary Mallon had been blamed for the spread of typhoid fever, so too was Canadian air steward Gaëtan Dugas blamed for the spread of HIV. While Shilts had hoped his book would be a boon to AIDS activists in calling out the federal govern- ment’s inaction, debates over Patient Zero and his culpability overshad- owed the rest of the book—playing right into the hands of religious conservatives:

Shilts’s salacious story of Patient Zero was ideal propaganda for conserva- tives because it played into the tenets of their latest campaign to isolate [peo- ple living with HIV] and gays. As an immigrant with AIDS, Gaëtan stood in for others like him who should be kept out of the country. Meanwhile, as both a gay man with an unchecked libido and an AIDS carrier who reck- lessly infected others, he embodied those who deserved to be locked up for their sociopathic behavior.80

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 39

In the minds of many Americans, the AIDS epidemic was a dangerous and deadly disease fueled by the reckless sexual behaviors of unrepent- ant gay men. The Patient Zero mythology represented that recklessness, providing the perfect villain for angry and fearful Americans.

Despite the fi ery rhetoric on the Right, however, AIDS activists resisted these calls for invasive and coercive measures against people living with HIV—but only in part. Conservatives such as Jerry Falwell and Pat Buchanan demanded that lawmakers institute blanket quaran- tine measures such as Cuba’s policy of indefi nitely confi ning all HIV- positive people to a sanitorium upon diagnosis.81 Legislators rejected such blanket measures, but in several states they did debate and ulti- mately enact quarantine and isolation procedures for HIV-positive indi- viduals classifi ed as a “health threat to others.” Discussed in greater detail in chapter 3, these policies target people living with HIV who have been warned by health authorities to change their behavior but continue to engage in conduct expressly prohibited by public health authorities—typically sexual intercourse without fi rst disclosing one’s HIV-positive status.

In many states, however, legislators went a step further and enacted even more coercive measures aimed squarely at punishing HIV-positive people labeled a health threat. Between 1986 and 2011, thirty-three states enacted HIV-specifi c criminal statutes that made it a crime (usu- ally a felony) for people who know that they are HIV-positive to engage in a wide range of behaviors without fi rst disclosing their HIV-status.82 According to a recent report coauthored by CDC and Department of Justice staff , twenty-fi ve states criminalize one or more behaviors that pose a low or negligible risk for HIV transmission, such as oral sex, bit- ing, spitting, or throwing blood.83 Several statutes do not specify which behaviors are criminalized; it is a crime simply to expose another person to HIV—wording that one observer calls “unconstitutionally vague.”84 Even HIV-positive people living in a state without an HIV-specifi c law have been incarcerated under similar circumstances. In states like Texas and New York without such a recalcitrant criminal law, prosecutors charge HIV-positive defendants under general criminal laws against assault and battery, reckless endangerment, or attempted murder.

Many of these statutes refl ect the climate of the period in which they were enacted: a time when there was an exaggerated perception of the risk of transmission of HIV and punitive attitudes toward persons living with HIV. In 2010, however, the Obama White House released its

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

40 | Punitive Disease Control

national HIV/AIDS strategy, stating that “in some cases, it may be appropriate for legislators to reconsider whether existing laws continue to further the public interest and public health.”85 For the many critics of these laws, these recommendations may come as welcome news. However, given that many of these points had been made as early as the late 1980s and that antiretroviral drugs have been in use since 1996, some may also wonder why these recommendations came so late.86

punishing patient zero

The impulse to punish the sick has a long history in public health—a history shot through with calls to coerce and quarantine the sick. Those eff orts have repeatedly disproportionately impacted the poor, racial minorities, sex workers, and other stigmatized communities—sometimes by design, but more often as a matter of practice. Yet, despite the long, sordid aff air between sickness and stigma, disease control remained a matter of civil law for most of American public health history. What begat this punitive turn?

As the HIV epidemic crystallized, it did so alongside the New Right’s calls for Americans to take personal responsibility for their lives by putting an end to New Deal welfare programs. Conservatives in federal and state legislatures worked in concert to gut welfare programs while declaring a war on crime that prompted a rise in incarceration rates unprecedented in human history.87 Funding to higher education was drastically cut while the number of prisons exploded, leading modern activists to demand “schools, not prisons.”88 For Black men especially, sociologists have demonstrated that incarceration has become a normal and even probable life event.89

It is in this context that the fi rst cases of HIV began to be reported in major urban areas in the United States—cities such as San Francisco and New York City, which conservatives already associated with hedonism and immorality. Perhaps if the disease had struck middle-class hetero- sexuals in the suburbs, the New Right’s reaction to HIV might have been diff erent. Instead, the disease was immediately associated with gay men, sex workers, Haitians, and injection drug users—some of the most stig- matized communities in the United States at the time. As many of these groups were already suspected criminals, criminalization was already top of mind for authorities tasked with managing these populations.

Evangelical conservatives capitalized on this association, issuing damning proclamations that the “gay plague” would cross over and

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Controlling Typhoid Mary | 41

infect middle-class American families. The cover of the July 1983 issue of Jerry Falwell’s Moral Majority Report perfectly encapsulates the stig- matizing narrative invented by conservatives. Featuring a photo of a White, middle-class family with two children whose faces are covered with medical surgical masks, the headline read: “Homosexual Diseases Threaten American Families.”

Although far more extreme, this punitive view of the epidemic reso- nates with public health’s message that risky individual health behaviors cause disease and need to be prevented. The logical leap from arguing that we need to prevent individual health behaviors that cause disease to blaming individuals for engaging health behaviors labeled “risky” was not so great. Medical historian Allan Brandt observed in 1997 that

AIDS has been placed strongly within the paradigm of responsibility. If one “merely” avoids the risk behaviors associated with transmission of the virus—unprotected sexual intercourse and sharing needles for intravenous drug use—one can avoid AIDS. Therefore, infection is a clear—and usually terminal—marker of individual risk taking, of engaging in behaviors typi- cally held to be deviant or criminal. According to this view, those who are infected are responsible for their plight. AIDS is caused by a moral failure of the individual.90

In ushering in a new era of risk avoidance in which the responsibility for one’s health was placed on each individual’s shoulders, public health inadvertently contributed to a context in which blame and punishment seem apt disease control strategies.

Patient Zero proved a compelling narrative not simply as an exercise in tracing the epidemiological origins of the epidemic; rather, his story helped And the Band Played On become a best seller because many Americans desperately wanted someone to blame. A gay male fl ight attendant made the perfect scapegoat for a terrifi ed public. The con- servative magazine The National Review branded Dugas the “Colum- bus of AIDS” and blamed him for bringing the disease to America. In such a context, criminalizing HIV was a logical response in this march of shame and blame.

Although Patient Zero was a fi ctional character invented by a jour- nalist, his story fueled calls for public health to institute coercive and punitive measures in response to AIDS. These demands for control resembled many of the historical cases reviewed in this chapter in that they typically singled out especially marginalized people for control: in the case of Patient Zero, an immigrant gay man; in other cases reviewed in this chapter, the poor, racial minorities, sex workers, and even

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

42 | Punitive Disease Control

alcoholics. When public health institutions discriminatorily targets spe- cifi c groups of people for coercive measures that are not applied to other groups, their eff orts reinforce the view that certain social groups are to blame for the spread of disease. Their implicit off ense is not their risky behaviors but their social diff erence. In this way, the history of punitive disease control is at times indistinguishable from America’s troubled history of social marginalization.

We cannot know what would have happened if more cases of Ebola had been brought to American shores, or what will happen when the next infectious disease becomes epidemic in the United States. As this book reveals, however, disease and punishment are more closely linked than even before in modern history.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

chapter 2

“HIV Stops with Me” The Repolarization of Post-AIDS HIV Prevention

Last year the Centers for Disease Control and Prevention (CDC) announced an initiative that would essentially eliminate the culturally and psychologically sensitive HIV prevention gay men have achieved over these past two decades. Little in the CDC’s [initiative] is actually new. Rather, it invokes the “enforcement” model that spawned the discipline of public health in the TB epidemic of early twentieth-century America. . . . Perhaps most disturbingly, the initiative imposes, in the guise of “prevention,” the humanly repressive values of the political right that now controls CDC funding. —Walt Odets, POZ Magazine1

When the CDC announced its new priorities for HIV prevention in 2003, many public health advocates were alarmed: where were the condoms? Although there was a growing sense in the fi eld that condoms were failing as an HIV prevention strategy, no one was prepared to admit defeat pub- licly. The announcement came in the pages of the CDC’s Morbidity and Mortality Weekly Report. The report outlined “four key strategies” that would guide the organization’s future HIV prevention eff orts:

1. increase the number of people tested for HIV;

2. increase access to twenty-minute rapid HIV tests;

3. focus prevention eff orts on individuals already diagnosed as HIV positive;

4. decrease mother-to-child transmission of HIV.2

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

44 | Punitive Disease Control

For decades, the very notion of doing HIV prevention had become prac- tically synonymous with promoting “safer sex” to the masses. When it came to HIV, condoms were public health’s bread and butter. The CDC’s announcement seemed to be signaling the end of an era. As it would turn out, that’s exactly what it would be.

For most Americans, the term HIV prevention conjures images of unsexy posters asking HIV-negative people to “wrap it up” or “use pro- tection.” But that approach has largely been abandoned in public health practice. In the decade that followed its 2003 announcement, the CDC moved further away from promoting safer sex to HIV-negative people and toward developing new strategies specifi cally targeting HIV-positive people. How and why did this happen?

This chapter explores that “repolarization”—from negative to posi- tive—in HIV prevention. The chapter explains how the notion of target- ing people living with HIV for HIV prevention—or what became known as “positive prevention”—came about. While positive prevention has long roots, it began to gain traction in the late 1990s as new treatments transformed HIV from a terminal illness into a chronic, manageable dis- ease—simultaneously transforming HIV-positive people from passive victims into active managers of their disease. However, even as public health practitioners came to agree that targeting HIV-positive people was important and necessary in this new context, there remained consid- erable debate over the content and character of the interventions. Social scientists cautioned against framing people living with HIV as individu- ally responsible for HIV prevention, arguing instead for situating their lives and challenges within a broader social context. Failure to do so, they warned, could facilitate shaming and blaming individuals viewed as acting irresponsibly. As this chapter shows, their warnings were not always heeded in practice. The repolarization of HIV prevention ana- lyzed in this chapter ushered in a new era in public health practice in which the HIV-positive person is portrayed as being individually respon- sible for ending the epidemic—and, implicitly, the one to blame when things go wrong.3

It is important to note that these eff orts to endow people living with HIV with a sense of personal, individual responsibility for ending HIV were not punitive in intent or in their most immediate eff ects. Indeed, many of the campaigns analyzed in this chapter were explicitly and directly informed by people living with HIV who genuinely want to do their part to end HIV and contribute to fi ghting the epidemic. This chap- ter should not be read as an attack on that altruistic spirit. Instead, this

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 45

chapter argues that the execution of these campaigns has at times char- acterized the responsibility in individualistic terms—an approach that can resonate with eff orts to assign blame, punish, and, ultimately, crim- inalize individuals viewed as failing to live up those individual responsi- bilities. In this way, this chapter reveals how even well-intentioned dis- ease control strategies that portray people living with infectious disease as individually responsible can have punitive ripple eff ects.

aids victims no more

The notion that public health campaigns should target individuals already infected with HIV seems almost obvious today. We live in a world where public health campaigns routinely promote individual responsibility for people who are suff ering from all kinds of ailments, from obesity to heart disease: Make better choices. Take care of your own health. Eat your vegetables. However, in 1985, any notion that people living with HIV might be considered responsible for managing their disease stood in con- fl ict with harrowing images of helpless AIDS patients suff ering a horrible, untimely death: how could we possibly describe these poor souls as “responsible” for anything?

When nighttime news programs fi rst began reporting a new, strange disease aff ecting homosexuals, people suff ering from AIDS were depicted in bleak terms. Newsreels cut to heart-wrenching images of shrunken fi gures dying in hospital beds. There was no treatment for the disease itself or for the many bizarre and extremely rare opportunistic infections that colonized defenseless HIV-positive immune systems. With gay men dying left and right, AIDS activists likened the havoc wreaked on communities and on HIV-positive bodies to the Holocaust.4 The images of AIDS victims broadcast into American homes were hardly that of people ready to take responsibility for their own health; instead, they were victims of a tragic, mysterious illness that left doctors scratching their heads (or worse yet, running in the opposite direction).

This powerful AIDS-victim narrative controlled media representa- tions of HIV for many years, ultimately crafting a public understanding of people living with HIV as isolated, disfi gured, and dying. But two important factors helped shift public perception. First, AIDS activist organizations like the AIDS Coalition to Unleash Power (ACT UP) explicitly advocated against the label “AIDS victim.” Even before ACT UP began organizing in the late 1980s, people living with HIV rejected the “victim” label.” In a 1983 manifesto colloquially known as the

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

46 | Punitive Disease Control

Denver Principles, a small group of people living with HIV condemned “attempts to label us as ‘victims,’ a term which implies defeat.”5 Activ- ists promoted language that focused on living with the illness rather than dying from it.6 Instead of focusing endlessly on people dying, ACT UP demanded coverage examining the institutions that were failing communities aff ected by AIDS. ACT UP pointed the fi nger at govern- ment agencies’ callous indiff erence and at pharmaceutical companies’ greed. Their chants—“ACT UP, fi ght back, fi ght AIDS!”—came to the doorsteps of powerful organizations across the country.

Their organizing had profound eff ects, changing government policies and, ultimately, the way medical research was done.7 It also reshaped how we talked about AIDS. Data analyzing how often particular words and phrases are used in Google’s massive collection of digitized books and other publications help demonstrate these eff ects. According to these data (see fi gure 2), the term AIDS victims begins to fall out of favor in the early 1990s. After 1992, the term loses traction year over

Google Ngram for “AIDS Victims”

Google Ngram for “People Living with HIV”

0.000002

0.000004

0.000006

P er

ce nt

ag e

o f

N g

ra m

0.000008

0.00001

0.000012

0.000014

0.000016

0.000018

0.00002

1 9

8 0

1 9

8 2

1 9

8 4

1 9

8 6

1 9

8 8

1 9

9 0

1 9

9 2

1 9

9 4

1 9

9 6

1 9

9 8

2 0

0 0

2 0

0 2

2 0

0 4

2 0

0 6

2 0

0 8

figure 2. Google Ngrams for “AIDS victims” and “people living with HIV,” 1980–2008. Source: Trevor Hoppe.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 47

year as people living with HIV gains in popularity—until people living with HIV outpaces AIDS victims in 2000.

But even though ACT UP’s activism was important in driving this shift in language, it was not the only variable at work. Science played an equally important part in reshaping how we understood people living with HIV. While an HIV-positive test result was a largely terminal diag- nosis in the 1980s, the introduction of eff ective treatment in 1996 dra- matically changed the outlook for people living with the disease. These drugs—called antiretrovirals, or ARVs for short—removed the threat of impending doom that prevented many people from seeing HIV-positive people as anything other than victims. Immediately after ARVs’ intro- duction, mortality rates plummeted. CDC surveillance data indicate that AIDS-related deaths declined, from a peak of 50,489 in 1995, by over 25 percent in 1996, over 50 percent by 1997, and by nearly 65 percent by 1998.8 Once expected to die a quick and untimely death, those diag- nosed as HIV positive were suddenly expected to live for decades. Seem- ingly overnight, HIV-positive individuals were transformed from victims of a terminal illness to active managers of a chronic disease.

And with management comes responsibility.

positive prevention and shifting responsibility in hiv prevention

In 2000, one of the nation’s leading HIV research centers, the Centers for AIDS Prevention Studies (CAPS) at University of California at San Francisco, issued an early report outlining the need for prevention tar- geting HIV-positive people. The report, Designing Primary Prevention for People Living with HIV, cites the changing landscape for HIV- positive people as a primary rationale: “The success of new treatments for HIV infection means that there are now more people living with HIV disease than ever before, and many of these individuals are feeling healthier and are better able to participate in the normal activities of life, including sex.”9 The implication was that if HIV-positive people are going to live long lives with the virus, public health agencies needed to devise strategies to make sure they keep the virus to themselves.

In order to justify the need for positive prevention, the report points to one HIV-positive man’s story in particular. In the late 1990s, Ameri- can media outlets exploded with the news that an African American man in New York had been arrested after allegedly infecting nearly a dozen White women. Some of the girls were underage, making the case

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

48 | Punitive Disease Control

ripe for a sensational news cycle. The report’s authors point to this “chilling” case as evidence for the need to target HIV-positive people for prevention:

In October 1997, a chilling story out of Chautauqua County, New York, manifested the fears of AIDS advocates and the general public alike. A man named Nushawn Williams, in jail for the sale of crack, admitted to public health authorities that he had had unprotected sex with 50 to 75 young women, most of them teenagers. The story was exceptional, since only iso- lated incidents of willful exposure to HIV had ever been reported in the press. But the political reaction was swift, with a state assemblywoman call- ing for mandatory names reporting of HIV infection and proposing a new category of crime from knowingly exposing someone to HIV.10

Sensational media reports depicted Williams as an “HIV monster.”11 Because New York did not have an HIV-specifi c criminal law at the time, Williams was ultimately convicted for sexual assault and, at the time of publication, remains incarcerated despite the completion of his court-ordered prison sentence in 2010.12

That scholars chose William’s controversial case to evidence the need for positive prevention highlights the delicate politics of responsibility involved. In early scientifi c papers on positive prevention, public health experts urged caution when framing responsibility for HIV-positive people. In one of the earliest academic publications on the subject, the authors urged public health practitioners to take care in framing the responsibility for preventing HIV in “collective” terms:

The concept of collective responsibility emphasizes that all of us, infected or not, low risk or high, bear a responsibility to change our attitudes and behaviors that may promote HIV infection. Without this balance, calls for personal responsibility become almost indistinguishable from that of blam- ing the victim and are likely to be counterproductive to prevention eff orts.13

A commitment to promoting collective responsibility for preventing HIV would require depicting it as something shared by everyone in a community, by both HIV-positive people and their HIV-negative coun- terparts, not just certain individuals.

Other scholars echoed these concerns. In a set of principles designed to guide public health practitioners developing positive prevention cam- paigns, sociologist and HIV policy expert Judith Auerbach goes even further by suggesting that eff orts to promote individual or collective responsibility must be “embedded in larger and more comprehensive eff orts to promote positive physical and emotional development, life

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 49

skills and chances, poverty alleviation, and gender equity.”14 In short, it takes a village; individual responsibility can reasonably go only so far. Without also highlighting the broad range of needs facing both HIV- negative and HIV-positive people and communities, Auerbach argues that calls for HIV-positive people to take responsibility for ending the epidemic will likely be unproductive.

The CDC fi rst signaled its interest in positive prevention in 2001 when it announced the Serostatus Approach to Fighting the Epidemic (SAFE) in the pages of the prestigious American Journal of Public Health.15 The SAFE model included fi ve strategies:

1. increase the number of HIV-infected persons who know their serostatus;

2. increase the use of health care and preventive services;

3. increase high-quality care and treatment;

4. increase adherence to therapy by individuals with HIV;

5. increase the number of individuals with HIV who adopt and sustain HIV-STI risk reduction behavior.16

In developing SAFE, the CDC had largely reoriented prevention around the surveillance and medical treatment of HIV-positive people. The responsibilities assigned to HIV-positive people were far more numer- ous than those assigned to HIV-negative individuals.

Two years later, the CDC gave SAFE teeth by announcing new fund- ing priorities built largely around this approach, which sparked an explosion in research on positive prevention. Between 1992 and 2002, the phrase positive prevention appears no more than a handful of times in academic publications indexed by Google Scholar. However, begin- ning in 2003, the number of citations of this phrase increases rapidly, to nearly three hundred citations per year by 2013.17 Further, while roughly one-third of the CDC’s HIV prevention grant applications in 1999 listed people living with HIV as a key population, that fi gure increased to 58 percent by 2001.18 Thus, the CDC announcement clearly was not just lip service; it had the eff ect of prompting new research and new inter- ventions targeting people living with HIV.

CDC funding streams did more than just generate new lines of aca- demic research on positive prevention; that money directly supported the development of new HIV prevention interventions targeting HIV-positive people. While it is not possible to analyze the broad array of HIV

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

50 | Punitive Disease Control

prevention campaigns across the country enacted under these policies, one social marketing campaign has achieved dominance. Initially launched in San Francisco in 1999, HIV Stops with Me has since been adopted in various forms by over a dozen state and local health departments across the country, from Los Angeles to New York City to Alaska.19 Each itera- tion is typically funded by city or state health departments. It uses posters, billboards, and other media featuring “real HIV-positive people” speaking openly about the realities they face in managing HIV and its transmission. As perhaps the most widely disseminated and longest-running prevention campaign targeting HIV-positive people, it provides a useful case study for examining how positive prevention has been applied in the fi eld.20

Figures 3, 4, and 5 feature three emblematic examples of the HIV Stops with Me campaign. Each takes a slightly diff erent tack in repre- senting how its HIV-positive subject takes responsibility for his disease. In the image depicted in fi gure 3 from a 2012 campaign targeting New York, Boston, Virginia, and Alaska, the message from “Shannon” is that “I’m HIV positive and I disclose with honesty.” By tying disclosure to a value—honesty—the 2012 campaign is intended to provide a moral con- text for the practice of disclosing one’s HIV-positive status: disclosure is not just a strategy for managing HIV risk; it is the right thing to do.

The poster depicted in fi gure 5 takes a similar approach. Used in eleven metropolitan areas in 2003, the spokesperson declares: “I believe

figure 3 (Left). HIV Stops with Me ad: “I disclose with honesty.” Source: Better World Advertising.

figure 4 (Middle). HIV Stops with Me ad: “I am the cure.” Source: Better World Advertising.

figure 5 (Right). HIV Stops with Me ad: “I believe in responsibility.” Source: Better World Advertising.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 51

in responsibility” and “I feel good knowing that I care enough to make sure I don’t infect anyone. I value other guys and my community.” The ad thus suggests that taking measures to prevent transmission means one is a responsible community member who cares for others and one’s community.

Finally, in the image depicted in fi gure 4, which was used in 2006 in Boston, Los Angeles, Long Beach, San Francisco, and Oregon, “Ger- ardo” declares himself to be “the cure”—suggesting that, while they can- not cure themselves, HIV-positive people can provide a “cure” by taking care not to infect others. The president of the advertising fi rm that designs and manages the HIV Stops With Me brand proclaimed in a press release announcing the I Am the Cure campaign that “HIV positive individuals have the power to prevent new infections and they can be the cure.”21

Each of these ads promotes responsibility in diff erent ways. Figure 3 depicts taking responsibility as a behavior, the act of disclosing one’s HIV- positive status to one’s partner. Figure 4 does not promote a specifi c behavior; rather, it promotes responsibility by suggesting that HIV-posi- tive people can “be the cure” for HIV by playing their part in ending HIV. Figure 5 picks up a similar thread, promoting the idea that HIV-positive people should not infect anyone else. In this ad, taking responsibility for HIV is an expression of caring for one’s partner and community.

Yet, while each ad takes a slightly diff erent approach to promoting responsibility, each construes the responsible party as “me”—an indi- vidual who should take action to prevent HIV transmission. The cam- paign’s slogan is, after all, HIV Stops with Me, not HIV Stops with We. HIV-negative partners and their role in preventing HIV are not repre- sented. While the third ad does make reference to a need to value “other guys and my community,” the job of protecting that community from HIV is depicted as solely that of the HIV-positive spokesperson.

In short, HIV Stops with Me promotes a notion of individualized responsibility that resembles an approach cautioned against by many public health scholars.

treatment as prevention: hiv-positive bodies as the new frontier

As the decade wore on, more and more HIV prevention advocates became exasperated with what seemed like signs of failure. In the fi rst half of the 2000s, researchers designed dozens (if not hundreds) of stud- ies to measure how many people were not using condoms. They repeat-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

52 | Punitive Disease Control

edly published the same fi nding: across the country, many men who have sex with men (MSM) reported having sex without condoms.22 While gay men had always been having sex without condoms, these studies seemed to suggest that rates of condomless sex were on the rise.

As barebacking (intentionally engaging in condomless sex) became a common term in HIV prevention circles, public health advocates expressed frustration that—thirty years into the epidemic—condoms remained the only tool in their toolbox.23 In the pages of the American Journal of Public Health, one public health scholar ominously wrote:

Behavioral interventions to promote condom use—the only strategy cur- rently available to stem the MSM epidemic—are failing. Under the best of circumstances, when proven eff ective, they are not promptly and easily dis- seminated, and certainly not straightforwardly translatable across the age spectrum, ethnic groups, and subcultures. Without sustained but costly qual- ity assurance procedures, they drift.24

Among the potential alternatives to condom promotion, authors typi- cally cited vaginal and rectal microbicides or gels that would be applied to the genitals to reduce the risk of infection. In putting all their eggs in the condom basket, had public health missed opportunities to develop other options?

In trying to decide what public health should do next, advocates and scholars often drew a line in the sand between behavioral interventions (condoms) and biomedical interventions (such as microbicides). Although studies demonstrated that a handful of interventions could get people to use condoms for a few months, none was highly eff ective in the long run. Faith that public health could do much to change behav- ior was eroding. But what if we could develop a medical technology—a “silver bullet”—that could stop HIV in its tracks? Biomedicine became HIV prevention’s great hope.

Unfortunately, fi ndings from the fi rst published studies testing bio- medical interventions were sometimes underwhelming. Data from the most promising vaccine trial in years suggested that the vaccine was, at best, only partially eff ective.25 While clinical trials evaluating the effi - cacy of male circumcision demonstrated up to a 60 percent reduction in the risk of contracting HIV among African men,26 results from microbi- cide trials have yielded more mixed results. An initial trial failed to show that the gel had any eff ect,27 and a later trial with a diff erent gel demonstrated only a 30 percent effi cacy among women.28 A third can- didate was thought promising after initial results suggested it could

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 53

reduce risk up to 54 percent among “high adherence” patients.29 How- ever, the National Institutes of Health prematurely halted a follow-up study that was unable to replicate these fi ndings.30

In the eyes of many public health authorities, none of these interven- tions were blockbusters. Many suff ered from confl icting scientifi c data. Others seemed too costly with too little return. While male circumcision was cheap and highly eff ective at preventing heterosexual HIV trans- mission, many in the West viewed promoting circumcision to African men as unethical—especially as circumcision directly protected only men from infection, not women (who are disproportionately impacted by HIV in many African countries).31

Scientists instead placed their bets on the growing body of science that suggested treating HIV could also help to prevent it—an idea called “treatment as prevention.” Anti-HIV medications lower the amount of virus present in the bodily fl uids of HIV-positive individuals. At such low levels, HIV becomes scientifi cally undetectable, making it diffi cult or even impossible to transmit. Many HIV advocates and researchers had suspected this was true since the fi rst treatments had been rolled out in the mid-1990s. Indeed, a 1998 Australian AIDS campaign targeting gay men featured the message “While we are still in the dark about viral load, use a condom.”32 Despite these suspicions, however, science had yet to weigh in on the matter.

The Australian viral load campaign reveals that some communities had long believed that treatment could be a form of prevention. Yet it took at least a decade for any established HIV scientist to publicly give credence to this idea. That moment came in 2008 when a group of Swiss scientists issued a report that became known as the Swiss State- ment. Their report shocked many because it argued that there was zero risk of sexual transmission for HIV-positive individuals under three conditions:

1. if they were on treatment;

2. if their viral load was undetectable; and

3. if they did not have another sexually transmitted co-infection.33

American HIV prevention experts did not warmly embrace the Swiss Statement. The director of the CDC’s Division on HIV/AIDS Prevention, Robert Janssen, argued that the Swiss scientists’ conclu - sion was “premature.”34 Epidemiologist Myron Cohen (ironically, the very scientist whose fi ndings would later validate the Swiss claims)

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

54 | Punitive Disease Control

argued similarly that there was not yet suffi cient evidence to support the Swiss claims:

We have every reason to pause and refl ect. The protection provided from [antiretroviral therapy] is not absolute and is not absolutely predictable. In a study involving discordant couples in Africa, Sullivan et al. reported that 4 (2.3 percent) of 175 transmission events among a group of 2,993 discordant couples occurred when the index patient was receiving therapy. In a very recent evaluation of discordant couples in Henan, China, 84 HIV transmis- sion events were noted among a group of 1,927 couples who were followed up from 2006 through 2008, and these transmission events were equally distributed among patients who were receiving and those who were not receiving ART.35

If these debates sound familiar to readers, it may be because they closely parallel debates over the initial promotion of condoms by gay health advo- cates in the United States in the early 1980s. When New Yorkers Richard Berkowitz and Michael Callen famously distributed their pamphlet pro- moting condom use, “How to Have Sex in an Epidemic: One Approach,” in May 1983 on the heels of HIV’s discovery, they did so without a scien- tifi c consensus on condom effi cacy to back up their recommendations.36 At the time, many scientists wrung their hands over whether it was appropri- ate to promote condom use without conclusive evidence. To this day, con- doms are not yet FDA-approved for anal sex.37

In a scientifi c analysis of condom studies published ten years after Berkowitz and Callen’s pamphlet, epidemiologist Susan Weller argued in 1993:

Until more is known about condom eff ectiveness, condom use promotion may have both positive and negative eff ects. . . . Condoms will not eliminate risk of sexual transmission and, in fact, may only lower risk somewhat. . . . Empirical data (reviewed in this report) indicate that a 90 percent reduction in risk due to condom use may be overly optimistic. The protective eff ect as estimated from human studies, regardless of use defi nitions, indicates a pos- sible 69 percent reduction in risk.38

Well over one hundred thousand Americans died of AIDS in the ten years between Berkowitz and Callen’s pamphlet and Weller’s waffl ing statement on condoms. Communities could not (and did not) wait for scientifi c consensus. While less urgent, the need to promote anything to help prevent HIV in 1983 was not entirely dissimilar from the need twenty-fi ve years later to fi nd alternatives to condoms.

Public health’s collective anxiety about the Swiss Statement reveals the gap—or rather, the chasm—separating community-based and scien-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 55

tifi c expertise. While many gay men were well aware as early as the late 1990s that treating HIV had a preventive eff ect, public health policy required cold, hard evidence. Despite their initially frigid response to the Swiss Statement, public health scholars and practitioners quickly warmed up to the concept as study after study validated its arguments in the 2010s. While studies of couples in which one person is HIV positive and the other is HIV negative had already shown that providing HIV-positive people with access to treatment reduced the risk of infection to their HIV-negative partners,39 the results published in 2011 from a rand- omized control trial (HPTN 052) of early treatment sent tidal waves through the world of prevention science and public health practice.40 In a cover story, the prestigious journal Science declared “Treatment as Prevention” was 2011’s “Breakthrough of the Year.” The author describes how the trial’s results “stunned” the lead researchers behind it:

The researchers planned to compare the groups until 2015. But on 28 April, an independent monitoring board that periodically reviewed the data stunned Cohen and his collaborators when it recommended that the results of the trial be made public as soon as possible. Of the 28 people who become infected with HIV that genetically matched the viruses in their long-term partners, only one was in the early treatment group—which also experienced 41 percent fewer serious health problems associated with HIV. Infected peo- ple in the delayed arm of the study were off ered ARVs immediately.41

At a conference in early 2014, preliminary results were announced from a study monitoring 767 heterosexual and same-sex serodiscordant couples in which one partner was HIV positive, on treatment, and had a suppressed viral load, and the other was HIV negative. In order to par- ticipate, couples had to report having sex without condoms at least some of the time. After a two-year period, the study found that no transmis- sions had occurred between partners after an estimated 44,400 sexual encounters.42 When a conference participant asked the researchers in the Q&A what the fi ndings revealed about the risk of an HIV-positive per- son with a treatment-suppressed viral load transmitting the virus, the lead researcher responded: “Our best estimate is it’s zero.”43 Final results from the PARTNER study released in 2016 confi rmed the preliminary results: After over 58,000 reported condomless sexual encounters (rep- resenting 1,238 couple-years), the study observed zero linked transmis- sions.44 In light of these stark fi ndings, AIDS activists have now begun trumpeting a new message: “Undetectable = Untransmittable.”45

In the scientifi c equivalent of a blink of an eye, treatment as preven- tion (TasP) went from being a dubious European theory to one of the

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Un/Detectability

HIV treatment blocks the ability of the virus to reproduce in the body, reducing the amount of virus in blood, semen, and other bodily fl uids. When the level of virus drops below a critical threshold (typically 50 copies per milliliter of blood), medical tests cannot measure the presence of the virus; at this point, the virus is described as “undetectable” in a person’s body.

It is much harder to transmit HIV sexually when a person’s bodily fl uids contain very few copies of the virus. In 2011, scientists published the results of a study evaluating whether initiating early treatment reduced the risk of transmission in couples in which one partner is HIV positive and the other is HIV negative. The study found that starting treatment reduced the risk of transmission by 96 percent.

Without Treatment With Treatment

figure 6. Undetectable = Uninfectious. Design: Jonathan Lefrançois. Illustration: Justin Karas for Pulp & Pixel.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

PARTNER Study

In 2016, scientists published the results of a trial evaluating whether having an undetectable viral load (rather than starting treatment at all, as in the aforementioned 2011 study) reduced the risk of transmission in couples in which one partner is HIV positive and the other is HIV negative. The study—known as the PARTNER study—enrolled 1,166 such couples; 38 percent were gay male couples, and the remaining couples were heterosexual.

One important condition of enrollment in the PARTNER study was that partners had to be having sex without condoms at least some of the time. This condition allowed scientists to isolate the effects of having an undetectable viral load from the protective effect of condoms. In total, scientists estimate that the couples enrolled engaged in 58,000 condomless sexual encounters during the study.

After nearly four years of following enrolled couples, scientists reported zero linked transmissions between HIV-positive and HIV-negative partners. While eleven HIV- negative partners did contract HIV during the study period, genetic testing revealed that they were not infected by their primary partner. This fi nding has led advocates to declare that “undetectable = uninfectious.”

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

58 | Punitive Disease Control

most prestigious science journals’ breakthrough of the year. Scientists suddenly agreed that treatment was, indeed, prevention. The number of scientifi c papers referencing TasP followed in kind, from virtually no references to the subject in academic papers catalogued by Google Scholar published in 2008 to nearly one thousand published in 2014.46

The CDC responded to these ongoing advances by announcing its latest plan for controlling the epidemic, high-impact prevention (HIP), in 2011.47 HIP aimed to combine “scientifi cally proven, cost-eff ective, and scalable interventions targeted to the right populations in the right geographic areas.”48 Although HIP includes interventions targeting HIV-negative indi- viduals at least on paper, the emphasis is on identifying and treating HIV- positive people. Indeed, the fi rst two prevention strategies in the announce- ment were “testing and linkage to care” and “antiretroviral therapy.” In a 2012 presentation from a public health consulting fi rm advising agencies adapting to HIP guidelines, the authors note that the “standard proposal . . . probably won’t be fundable next CDC round” and that interventions “must primarily target PwP [prevention with positives].”49

The implications of this new framework for HIV prevention were important. Because HIV medications were reframed as a tool for preven- tion, treatment was no longer just an intervention done solely for the benefi t of the HIV-positive patient. Under TasP, HIV therapy also became an intervention for the sake of future (or current) HIV-negative partners. It was perhaps no coincidence that this new justifi cation for HIV treat- ment emerged at precisely the same time that a global recession had hampered massive, multibillion dollar campaigns to treat every person infected with HIV globally. The largest of these eff orts, the U.S. Presi- dent’s Emergency Plan for AIDS Relief (PEPFAR), allocated over three- quarters of its budget to the treatment and care of HIV-positive individu- als.50 Reframing their work as both treatment and prevention provided a new rationale for funders looking to get more done with fewer dollars.

On the ground, public health agencies had taken their marching orders and reorganized their work. “Use a condom” was no longer their mantra; under TasP, “test and treat” became the rallying cry of agencies across the world. Unlike previous HIV prevention strategies that empha- sized behavior change and condom use, test-and-treat emphasized bio- medical technologies such as rapid HIV-antibody tests and antiretrovi- rals. This message carried signifi cant political appeal: HIV tests and pills were far less politically contentious than the tools of the behavioral HIV prevention programs of yore: namely, condoms and clean needles.51 In foregrounding concerns over access to health care and compliance

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 59

with treatment regimens, test-and-treat eff ectively relocated challenging conversations about sex and drugs to the back burner. Given the cycle of moral outrage from elected offi cials that frequently threatened public health budgets, health authorities may have viewed the shift to test-and- treat as particularly welcome.

The approach quickly caught on. At time of writing, of the fi ve CDC- developed HIV prevention campaigns aimed at at-risk populations, four encourage people at risk to get tested and one raises general awareness about HIV. None focus primarily on encouraging safer sex practices for HIV-negative people, nor do any promote treatment for HIV-positive peo- ple.52 Figures 7, 8 and 9 illustrate three of the campaigns encouraging people at risk to get tested. The fi rst, “Testing makes us stronger,” targets African American MSM. The second ad, “My reasons,” is similar, except that it targets Latino MSM. The third ad targets African American women.

Most of these ads promote a collective version of responsibility that resembles the public health recommendations examined earlier in this chapter. The third ad could be interpreted as promoting an individual- istic form of responsibility similar to that depicted in the HIV Stops with Me campaign, in that the woman is depicted as making a decision on her own to get tested. It is not immediately obvious whether she is motivated to get tested for her sake or her partner’s—or for both. The

figure 7 (Left). HIV testing campaign: “Testing makes us stronger.” Source: Centers for Disease Control and Prevention.

figure 8 (Middle). HIV testing campaign: “My reasons for getting an HIV test.” Source: Centers for Disease Control and Prevention.

figure 9 (Right). HIV testing campaign: “Get a free HIV test.” Source: Centers for Disease Control and Prevention.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

60 | Punitive Disease Control

ad implies that she may have been unknowingly exposed to HIV by her male partner. Although it does not plainly state that he knew he was infected and did not tell her, it does not foreclose suspicion of that pos- sibility. In fact, it seems to be promoting suspicion as a primary moti- vating factor for getting HIV tested.

It is notable that the “Take Charge. Take the Test” campaign depicts an African American woman’s decision to get tested in diff erent terms from those depicted in the campaigns targeting Latino and Black MSM. The campaign necessarily walks a tightrope of political sensibilities between race, gender, and sexuality. On the one hand, while the ad is opaque about what knowing “everything” might entail, popular dis- course on African American men is rife with racist narratives about their “down-low” sexual practices and untrustworthiness that facilitate read- ers coming to their own conclusion: get tested because you cannot know what your man does in his free time.53 On the other hand, in a condom- focused HIV prevention context, women do report frustration with hav- ing to rely on men to truthfully report whether or not they have been faithful or recently tested.54 In such a context, promoting suspicion may be a useful strategy for navigating this gendered uncertainty.55

Taken together, these HIV testing campaigns would seem to be placing responsibility on HIV-negative individuals. But what does that responsibil- ity entail? Under test-and-treat, the only explicit obligation assigned to HIV-negative people is to get tested; protective behaviors that would explicitly implicate their responsibility for preventing their own infection are no longer emphasized. Indeed, the only HIV-negative individuals of interest under the test-and treat model are those who are not, in fact, HIV negative, but undiagnosed HIV positive. On the other hand, the potential infectiousness of HIV-positive bodies comes into focus, implicating their responsibility for preventing infecting others. Thus, the notion of responsi- bility that comes out of the test-and-treat model seems to relieve HIV-neg- ative individuals of much of their responsibility for protecting themselves.

Notably, CDC did not develop a treatment-focused social marketing campaign targeting HIV-positive people until 2016, when it introduced the HIV Treatment Works campaign.56 The campaign presents HIV- positive people living happy, productive lives, unencumbered by their diagnosis. However, in the dozens of posters and materials produced for the campaign, the preventive benefi ts of treatment are barely mentioned, suggesting the CDC remains uncertain over how to best promote treat- ment as prevention. This uncertainty was further evidenced when the CDC announced new recommendations the following year for HIV-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 61

negative women wishing to become pregnant with a male partner who is HIV-positive; many AIDS activists and experts promptly criticized those guidelines for continuing to support expensive techniques like “sperm-washing” instead of recommending that couples combine the preventative benefi ts of treatment (for the HIV-positive man) and pre- exposure prophylaxis (for the HIV-negative woman).57

The CDC’s tepid embrace of treatment’s prevention-oriented benefi ts may be in part due to the private nature of the doctor-patient relation- ship in which treatment decisions are made. Rather than investing in billboards or radio ads, some recent CDC-developed HIV prevention campaigns aimed at HIV-positive people target them indirectly through their health care providers. Included in the materials of one such inter- vention—Prevention Is Care—is a patient brochure targeting HIV-posi- tive patients in serodiscordant relationships (or relationships in which one partner is living with HIV and one is HIV-negative). The brochure’s tips for how you can stop the spread of HIV are broken into two parts. The fi rst, “Do tell,” encourages patients to disclose their HIV-positive status to their partners so “he or she will know it’s important to be safe during all sexual activity and to be tested often for HIV.”58 The second part, “Don’t take risks,” which is on preventing transmission, states that “abstinence (not having sex) is the best way to prevent the spread of HIV. But if abstinence is not possible, use condoms.”59 In regard to whether lower viral loads might reduce or eliminate the risk of trans- mission, the brochure states defi nitively:

Don’t think you have “safe” times. Even when tests show that your viral load (the amount of HIV in your blood) is very low or undetectable, you can give HIV to your partner because the virus is still in your body. HIV can be high enough in other body fl uids to be spread to your partner.60

Forgetting, for a moment, that the CDC brochure promotes abstinence as the “best way” to prevent HIV (despite its high failure rates observed throughout human history), recent studies show that having an unde- tectable viral load reduces the risk of HIV transmission by somewhere between 99.9 and 100 percent. Of course, when this brochure was pub- lished in 2011, these fi gures were not yet available to the CDC. None- theless, the brochure’s claim that an HIV-positive person with an unde- tectable viral load “can give your partner HIV” appears to have become quickly outdated.

More broadly, the brochure again implies a host of individual responsibilities for HIV-positive people for managing HIV. Despite

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

62 | Punitive Disease Control

targeting HIV-serodiscordant relationships, the brochure does very little to acknowledge what the HIV-negative person might do to share the responsibility of managing that risk. HIV-positive partners are instructed to disclose their status so that that their partners “will know it’s impor- tant to be safe,” which presumes that the HIV-negative partners would not otherwise know that they should protect themselves against infec- tion. Despite studies showing that partners can play an important role in helping HIV-positive people adhere to their medication regimen, the brochure does not advise HIV-positive people how or why they might discuss their treatment with their partners.61 Although the brochure does note that anal sex is much riskier than oral sex, studies have long demonstrated that there is a wide range of harm-reduction strategies beyond using a condom that both HIV-negative and HIV-positive peo- ple can employ to reduce the risk of transmitting HIV.62 These prac- tices—sometimes referred to as seroadaptation—are not discussed. In short, the brochure provides a wide array of responsibilities for HIV- positive people, while mostly ignoring their partners.

Yet, while CDC-developed prevention materials indirectly targeted HIV-positive people to encourage them to go on treatment, outside agen- cies funded with CDC dollars had already begun developing more explicit social marketing campaigns. A new iteration of the HIV Stops with Me campaign was announced in 2014 that depicted its spokesmodels before and after suppressing their viral load (see fi gure 10). The campaign’s tagline plainly stated its intended eff ect: “Find doctor / Keep appoint- ments / Take meds / Check lab results.” In this series, the spokesmodel’s portrait was divided. On the left side, having a “detectable” viral load was described in negative, shameful terms. On the right side, having an “undetectable” viral load was depicted in positive terms. The ad’s central message was reinforced by visual cues: having a detectable viral load was depicted in black and white, suggesting an old-fashioned or antiquated way of being. Having an undetectable viral load was depicted in full color, suggesting progress and a happier, modern way of living.

According to the campaign, suppressing one’s viral load was only a matter of accepting one’s HIV-positive status and feeling in control of one’s life. But surely there are many reasons why HIV-positive people are not linked to care, many of which are not merely psychological and that are outside an individual’s control. These could include housing instability, an inability or fear of navigating a complex health care bureaucracy, negative experiences with stigmatizing health care provid- ers, or a fear that showing up at the local health clinic for HIV treat-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 63

ment might spark hurtful gossip. These obstacles are not reducible to “wishing away” one’s HIV-status: they are social problems, not per- sonal issues.

More than a decade has passed since public health experts warned against individualistic positive prevention campaigns. At time of publi- cation, no widely distributed campaign targeting HIV-positive people has done much to connect that personal responsibility to wider institu- tions and social problems. This problem is not limited to HIV preven- tion, of course. Critics of modern public health campaigns have long argued that health marketing tends to focus solely on the individual and do little to consider the broader social context in which those individu- als live.63 Consider, for a moment, the most recent public health cam- paign you can remember—whether anti obesity, anti teen pregnancy, or some other health issue. The tagline most likely had something to do with encouraging you (the individual) to make a “smarter” or “health- ier” (personal) choice. The problem is more systemic and has to do with the way we conceive of “health” as the cumulative result of a series of individual choices. But while the promotion of individual responsibility is common in public health campaigns, in later chapters we will see that the stakes are considerably higher when it comes to HIV: if you are HIV positive, being labeled irresponsible can land you in prison.

the promise of prep?

Although the condom is not yet extinct, HIV prevention campaigns tar- geting HIV-positive people have reshaped notions of responsibility in public health practice. Prevention with positives repolarized the fi eld, switching its focus from HIV-negative people to people living with HIV. In doing so, it turned our assumptions about who should be responsible for preventing future HIV infections on their head.

But the fi eld is never static. A new technology appears poised to push back against this trend. In July 2012, the Food and Drug Administra- tion (FDA) approved an antiretroviral already used for treating HIV for use by HIV-negative individuals in order to protect against infection. Pre-exposure prophylaxis—PrEP, for short—is a prevention strategy that involves taking a pill daily to protect against infection. Some gay activists have likened the approach to a kind of gay “birth control.”64 PrEP was approved on the heels of remarkable clinical trial data that showed it could reduce an HIV-negative person’s risk of contracting the virus by 96 percent when taken daily.65 Although critics were initially

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

64 | Punitive Disease Control

concerned that PrEP’s remarkable success might be limited to the clini- cal trial environment where patients are monitored closely, data from Britain’s PrEP demonstration project measuring the pill’s eff ectiveness in the real world, announced in 2015, show it to be just as eff ective in practice.66 In short, taking a pill a day can protect against HIV infection.

figure 10. HIV Stops with Me ad: “Detectable/Undetectable.” Source: Better World Advertising.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 65

There is just one problem: not enough of the people who need it most are taking it. A recent study estimated that only 49,158 started PrEP in the United States between January 2012 and September 2015.67 While that study estimates that the number of PrEP prescriptions is increasing year over year at a fast clip, its authors also estimate that 74 percent of PrEP prescriptions went to White patients, 12 percent to Latino patients, and 10 percent to Black patients. These fi gures stand in stark contrast to today’s epidemic, however: the CDC estimates that 45 percent and 24 percent of new HIV diagnoses in 2015 were among Black and Latino people respectively.68 Moreover, the same report estimates that Black and Latino women had roughly four times lower rates of PrEP initiation than White women, yet they made up 61 percent and 15 percent of new HIV infections among women in 2015.69 In short, while the number of people taking PrEP has accelerated, it has not yet reached the populations hard- est hit by the epidemic. If this course holds, PrEP may even further exac- erbate the racially disparate impact of the epidemic.

Given that PrEP is so highly eff ective when taken daily, how can we make sense of its molasses-paced uptake among communities hardest hit by the epidemic? Perhaps ironically, the answer may be a mix of stigma and science. In terms of stigma, despite PrEP’s high eff ectiveness and few side eff ects, its use has been a polarizing subject in public dis- course.70 Tense debates have pitted AIDS activists against one another, with some describing those who take the drug as irresponsible “Tru- vada whores.”71 Despite the millions or perhaps even billions of dollars at stake, even the pharmaceutical company that manufactures the drug has been at times reluctant to market the drug for PrEP.72

In terms of science, HIV is no longer a terminal illness. By transform- ing HIV into a chronic illness, antiretroviral treatment eliminated a gruesome outcome that motivated many people to protect themselves against infection. The public face of HIV was eventually transformed from a disfi gured person dying in a hospital bed to a happy, healthy person whose once-a-day medication regimen seems almost like a mul- tivitamin. In this context, some may perceive PrEP as taking a pill a day to prevent having to take a pill a day. A recent study estimating life expectancy for HIV-positive people diagnosed today demonstrates the dramatic improvement in recent years for people living with HIV: while life expectancy for newly diagnosed HIV-positive patients overall was reduced, the study estimated that a twenty-year-old gay man diagnosed with HIV today will live an additional 69.3 years—several years longer than men in the general population (although the study in question did

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

66 | Punitive Disease Control

not speculate as to what might be driving this surprising fi nding, it may be related to the average man’s habitual avoidance of doctors; in this study, HIV-positive men were presumed to regularly see a physician).73 The remarkably healthy prognosis for HIV-positive people today will almost certainly make promoting HIV prevention more challenging.

But if HIV-negative people are called to take responsibility for pro- tecting themselves against HIV infection, how will that responsibility be represented? Will it be presented as an individual choice made for one’s own personal health? For the love of a partner? Or will it be sold as a way to come together as a community to fi ght the epidemic? Only time will tell. At the time of writing, PrEP’s lackluster adoption in nonwhite communities means that identifying HIV-positive people and getting them linked consistently to care remains a key strategy of twenty-fi rst- century HIV prevention.

the politics of responsibility

Individualistic positive prevention campaigns like HIV Stops with Me fall into many of the traps experts caution against. Their HIV-positive spokespeople proudly proclaim disclosing and caring for their commu- nities. However, the social context for these eff orts to prevent HIV is largely absent. For example, HIV Stops with Me does not connect dis- closure to emotional well-being or structural problems that many HIV- positive people face, such as housing insecurity, fi nancial instability, and domestic violence. Yet we know that the decision to disclose one’s HIV-positive status can be infl uenced by many such factors. Not accounting for these broader issues facing HIV-positive people leaves the viewer with the impression that HIV-positive people could stop HIV if they would only choose to do so: the perfect recipe for blame and shame.

On the other hand, the HIV testing campaigns targeting HIV-nega- tive individuals promote a diff erent, more collective kind of responsibil- ity. In the ads in fi gures 7 and 8, the decision to get tested is situated within a particular social context: a relationship, a family, a group of friends. Whereas the responsibilities promoted for HIV-positive people by the HIV Stops with Me campaign were largely individualistic (“I disclose with honesty”; “I am the cure”; “I believe in responsibility”), HIV-negative MSM are depicted as taking on a socially embedded responsibility alongside family, friends, and romantic partners. If they fail to get tested, presumably the blame extends beyond the individual.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

“HIV Stops with Me” | 67

Why was their community not more supportive? Was their partner judgmental about HIV testing? These are the kind of questions asked when a collective responsibility is not met.

When individual responsibility is not met, however, the questions are markedly diff erent. As described earlier in the chapter, researchers justi- fi ed the need for developing prevention strategies targeting HIV-positive people by citing a criminal case against a New York man, Nushawn Williams, accused of infecting nearly a dozen women. As the second half of this book will reveal in greater detail, criminal laws punishing HIV-positive people have spread during the very same time as the repo- larization of HIV prevention analyzed in this chapter. To date, more than thirty U.S. states have enacted HIV-specifi c criminal statutes that generally make it a crime for HIV-positive people to have sex without fi rst disclosing their HIV-positive status.74

It is no coincidence that public health scholars directly invoked Wil- liams’s criminal case as a justifi cation for targeting HIV-positive people for prevention. HIV-specifi c criminal laws depend on the same notion of individual responsibility for people living with HIV promoted in the HIV Stops with Me campaign. Although unintentional, the repolariza- tion of HIV prevention may have inadvertently contributed to the crim- inalization of HIV.

The next chapter examines this relationship more closely. How do the big-picture policies and rhetoric explored in this chapter play out on the ground? In the age of test-and-treat, local health departments are ramping up their surveillance programs targeting HIV-positive people. These programs are not only useful for public health purposes; they also happen to be useful for enforcing the law.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

As the HIV epidemic wore on in the 2000s, the scientifi c evidence demon- strating that antiretroviral treatment could virtually eliminate the risk of sexual transmission grew steadily into a mountain. In the midst of wide- spread pessimism that a vaccine or cure would ever be found, public health authorities focused on a target they viewed as more pragmatic: ending AIDS. Of course, ending AIDS did not imply eliminating new HIV infec- tions; instead, it referred to the hope that HIV infection could be halted from progressing to AIDS by putting every newly infected person immedi- ately on antiretroviral therapy. To succeed, however, health authorities would need to fi nd a way to get HIV-positive people to take their pills. The age of condoms was over. The age of positive prevention had begun.

For decades, AIDS activists resisted public health eff orts to track HIV-positive people more closely on civil liberties grounds. Because of the disease’s highly stigmatized nature, advocates worried that the standard intrusions into patient privacy in the name of public health were likely to drive the epidemic underground. For these reasons, they lobbied for an approach that came to be known as “AIDS exceptional- ism,” or treating HIV diff erently from other infectious diseases. Instead of the standard, more invasive approach, activists proposed that pro- tecting civil rights and squashing discrimination would be a much more eff ective strategy for containing the epidemic. These arguments pre- vailed in the early years, when an HIV-positive diagnosis was terminal and eff ective treatment was nonexistent. However, as this chapter will

chapter 3

The Public Health Police

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 69

demonstrate, a series of medical advances in the late 1980s and 1990s shifted the terms of the debate. Was there still a legitimate rationale for treating AIDS diff erently than other diseases? For many in public health, the short answer was no; it was time for the gloves to come off .

The previous chapter illustrated how HIV prevention was repolar- ized to target HIV-positive people. In this new era of positive preven- tion, people living with HIV were no longer thought of as tragic “AIDS victims”; they were expected to take care of themselves and their part- ners. This chapter draws on interviews with local health offi cials in Michigan to explore how local health authorities ensure that HIV-posi- tive clients behave in a manner offi cials deem responsible—and how they catch and punish those who do not.

While the last chapter explored the shift toward promoting individ- ual responsibility among people living with HIV, this chapter looks at how punitive disease control emerges at the local level through police- like investigations and public health policies explicitly designed to hold people living with HIV legally responsible for their behaviors.

the end of aids exceptionalism

Thirteen-year-old Ryan White was an unexpected AIDS activist, pro- pelled to the national spotlight after he was expelled from his Kokomo, Indiana, middle school in 1984. The petition for his expulsion was signed by both parents of his classmates and teachers. White was one of the estimated 50 percent of hemophiliacs who contracted HIV through tainted blood products during the early years of the epidemic. He was young, White, and had a sympathetic story—the perfect poster child for a campaign against HIV stigma.

When AIDS was fi rst reported in the early 1980s, the public was most sympathetic to individuals infected with HIV through tainted blood products or through childbirth—causes out of one’s control. Many Americans had little sympathy for the other members of the “4-H club” (hemophiliacs, homosexuals, heroin users, and Haitians), who were most at risk of contracting the disease. Members of the religious Right proclaimed AIDS to be the “cure” for homosexuality, and they fought tirelessly to block eff orts to fund HIV prevention in the name of helping gay men or junkies. In such a moralistic political context, a child like Ryan White was the perfect spokesperson for HIV funding. Even the most blackhearted member of Congress would fi nd it hard to go on television to tell a dying child that he did not deserve public

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

70 | Punitive Disease Control

assistance. It is no coincidence that the major piece of federal legislation that continues to fund HIV treatment to this day—the Ryan White CARE Act of 1990—is titled in White’s memory.

AIDS activists cited discrimination against people living with HIV, such as White’s expulsion from his school, as evidence against calls for more invasive public health measures to track and control HIV-positive people. Activists argued that although other diseases were stigmatized, HIV stigma was exceptionally potent in the way that it fostered dis- crimination and exclusion in American society. For these reasons, they lobbied for treating HIV diff erently from other infectious diseases.

Campaigns to treat HIV diff erently were often successful in the early years of the epidemic. However, a series of scientifi c advances over the next decade would take the wind out of the sails of AIDS exceptional- ism arguments. First, heating experiments published in 1984 demon- strated that HIV could be eliminated from tainted blood products used by hemophiliacs, ending the epidemic in that population nearly over- night.1 Second, scientists developed an accurate HIV test in 1985, and screening was immediately implemented for all donated blood. Third, scientists discovered that an experimental drug, azidothymidine (AZT), worked against HIV and that it was particularly good at preventing mother-to-child transmission during childbirth; the number of babies born with HIV in the United States peaked in 1992 and declined by an estimated 67 percent through 1997.2 In short, the two most sympathetic faces of HIV, children and medical patients, were no longer being infected with the disease in large numbers. Mercifully, there would never be another American AIDS activist like Ryan White.

However, if the inventions of safe blood products and AZT were fl esh wounds to AIDS exceptionalism, the introduction of eff ective HIV treatment in 1996 was the coup de grâce. As HIV was transformed from a terminal illness to a chronic disease, the logic of aff ording special protections to people living with HIV was gravely undercut. Many in public health began to argue for a return to more invasive surveillance practices. In a New England Journal of Medicine essay published in 2005, then-commissioner of New York City’s health department Tho- mas Frieden and colleagues argued that the time for treating HIV diff er- ently had passed. Frieden—whom President Obama would later tap to become director of the Centers for Disease Control in 2009—argued that it was time public health implemented “traditional disease-control principles and proven interventions that can identify infected persons, interrupt transmission, ensure treatment and case management, and

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 71

monitor infection and control eff orts throughout the population.”3 With HIV-positive people living normal lives instead of dying soon after infection, controlling the behavior of people living with HIV became a top priority for prevention eff orts.

At the center of many such debates was whether health departments should collect the names of people newly diagnosed as HIV positive in order to track the epidemic in each state. Proponents argued that name- based systems were critical to collecting and maintaining accurate sur- veillance data; without names, they argued, it would be much more diffi cult to ensure that anyone diagnosed as HIV positive was not later counted again as a new infection. AIDS activists countered that the pri- vacy pitfalls that came with amassing the names of people living with HIV in a single data set were unacceptable.4 These concerns were infl amed by egregious examples in which those pitfalls were exposed, such as a Florida health department staff member being accused in 1996 of using a health department list of over four thousand HIV-positive people to screen potential sexual partners—and inviting his friends to do the same.5

Instead of adopting name-based systems, activists proposed that states adopt anonymous, code-based systems. They argued that systems based on suffi ciently unique codes could achieve similar results to name- based systems without compromising the privacy of such a marginal- ized population. Health offi cials argued that the risks associated with name-based systems were minimal and that the public health value of good surveillance data outweighed them. Moreover, collecting names not only produced better surveillance data, they argued, but it also ena- bled health department staff to follow up with newly diagnosed patients in order to off er them additional services such as counseling and, in later years, treatment.

Without the ability to follow up with HIV-positive clients, health offi cials could not universally implement additional surveillance pro- grams targeting those diagnosed as HIV positive—programs such as universal contact tracing. Developed in the early twentieth century for managing syphilis outbreaks, contact tracing involves asking diagnosed individuals to reveal the names of their sexual partners so that they might be tested and treated, if necessary.6 The practice is best suited to diseases that are curable and highly contagious—two things that HIV is not. Despite questions over its eff ectiveness (not to mention its potential threat to privacy), the practice was widely implemented in HIV testing clinics around the country.7

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

72 | Punitive Disease Control

By 2005, debates over privacy and HIV surveillance programs had quieted. Forty-three state and local health departments had adopted name-based reporting and, for the most part, the proverbial sky had not fallen. The CDC leveraged this momentum by issuing a dear colleague letter to encourage the fourteen state and local health departments still using code- or name-to-code-based systems to transition to name-based systems.8 The next year, CDC offi cials pushed even further by issuing new guidelines recommending that all Americans between 13 and 64 should be tested for HIV and that providers should abandon the prac- tice of requiring informed consent for HIV testing. Instead, they pro- posed that clinics implement a practice of “presumed consent” in which HIV testing is performed unless the individual explicitly and proactively objects. By 2008, every health department in the United States had implemented name-based HIV case reporting.

This chapter explores how local health offi cials in one state have put these tools to work in their eff orts to control HIV-positive people. Michigan was an early adopter of many of these policies, moving to implement name-based reporting in 1988 when less than a dozen states were using such systems. The Michigan legislature provided the legal basis for its surveillance practices in a sweeping omnibus legislation package passed in December 1988. This wide-ranging set of bills deal- ing with HIV was “tie-barred” together, requiring that they all pass in order for any of them to go into eff ect. It included a little-debated legis- lative package aimed at controlling “recalcitrant” HIV-positive people deemed a “health threat to others” (HTTO).

This bundle of statutes is most well-known for its criminal provision making it a felony crime for HIV-positive individuals to engage in a wide range of sexual practices without fi rst disclosing their status (chapter 5 explores how Michigan criminal courts enforce this law). But the bulk of the “health threat” legislation outlines civil law procedures for control- ling HIV-positive clients labeled “recalcitrant”—procedures such as forcing individuals to undergo counseling, treatment, and/or quarantine.

This chapter explores how twenty-fi ve Michigan health offi cials tasked with managing HTTO cases interpret and apply both the crimi- nal and civil portions of this law. These offi cials hail from fourteen of the seventeen local health departments in Michigan with staff specifi - cally assigned to handle HIV in their community. Eleven manage their jurisdiction’s HIV program; eleven serve as “disease intervention spe- cialists,” who are responsible for tracking down newly diagnosed peo- ple’s prior sexual partners for contact tracing; and three serve both

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 73

functions. While the state maintains that the work of local health offi - cials is done solely in the interests of promoting public health, many of the strategies they employ suggest they are also engaged in policing and law enforcement.

Why Michigan? When it adopted these policies in 1988, its combina- tion of epidemiological surveillance technologies, civil law, and criminal penalties was pioneering.9 Others states had name-based reporting, health-threat laws, and criminal disclosure laws, but few had all three. Today, most states have similar public health practices in place and similar laws on the books. Consequently, Michigan provides a useful test case for understanding the social implications that these policies and practices have for public health, social justice, and inequality. All the participant names used in this chapter are pseudonyms chosen solely at the discretion of the interviewee in order to protect confi dentiality.

policing public health

When clients visit one of the many publicly funded health clinics in Michigan to be tested for HIV, they can expect more than just a fi nger prick. HIV testing counselors sit down with clients, reviewing their sex- ual history with a fi ne-tooth comb. How many times have you engaged in anal sex in the last six months? Did any of your partners ejaculate inside you? How many times in the past six months have you used nar- cotics when having sex? Clients’ responses are often catalogued and collectively analyzed. Considered by health experts as an opportunity for clients to refl ect on their sexual lives and perhaps commit to taking more care to prevent acquiring HIV in the future (if they test negative), pre- or post-test HIV counseling has long been one of the cornerstones of HIV prevention.

If a client tests positive for HIV or any other reportable sexually transmitted infection (STI), the testing counselor will not only provide counseling and referrals for treatment but is also legally required to conduct contact tracing and ask the client to report the names of sexual partners. Health offi cials later attempt to contact those individuals to recommend that they be tested for HIV and other infections—a pro- gram known as “partner services.” However, health offi cials use the information gathered through HIV testing and partner services to do more than just inform partners and facilitate their testing. In some juris- dictions, health offi cials use these surveillance data as a mechanism for identifying potential health-threat lawbreakers.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

74 | Punitive Disease Control

Mitch (HIV/AIDS coordinator, jurisdiction 2) paints a clear picture of how this works in her jurisdiction, where she coordinates the local health department’s HIV/AIDS programs. The process begins when a person is newly diagnosed with an STI like HIV or gonorrhea and is asked to dis- close partners’ names. But a very pointed question is tacked on: “Did any of the named partners disclose that they were HIV positive?”

We make sure that we say everything very confi dentially. So the one question that we have that we always ask somebody when they’re giving us names is . . . if that person gave me four names, I would say, “Did any of these four people ever tell you that they were HIV positive?”

Tacking on this question is not standard practice. Indeed, it is specifi - cally added in order to catch people who are not disclosing their HIV- positive status.

The state health department—the Michigan Department of Commu- nity Health (MDCH)—describes the following as goals of partner services:

• “Counseling HIV/STD-infected clients on disease state and need to identify their sex and/or needle-sharing partners at risk for HIV/STD;

• Locating partners, and notifying them of exposure and off ering testing and treatment, prevention, education, and referral to medical and support services.”10

The state health department positions the work of partner services solely in the terms of public health and medicine. However, despite these claims, some local health departments have clearly modifi ed part- ner services for law enforcement purposes.

Notably, partner services is not limited to HIV testing; public health staff attempt to collect the names of past sexual partners for anyone newly diagnosed with other STIs such as gonorrhea, chlamydia, and syphilis. For example, although a client may be diagnosed with, say, syphilis rather than HIV, health offi cials are still required to provide partner services. And despite the fact that the client did not test for HIV, health department staff can still use the occasion to seek out HIV-posi- tive partners. Donna (disease intervention specialist, jurisdiction 13) describes this process:

Let’s say they come in and they have a secondary infection. Let’s say they have chlamydia and gonorrhea. Okay, by law—or by our duty, basically—

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 75

gonorrhea cases are reportable to us. . . . Part of our investigation process is to ask, “Who’s your partner?” In this instance, this person mentioned, “So- and-so is my partner.” So when we pulled up the fi le looking for the other person, we realized at that time that the person was HIV-infected also . . . so that tells us, “You’re having unprotected sex.”

There are several “fi les” that Donna might refer to in order to iden- tify a reported partner as HIV positive. Mitch describes the two likely possibilities:

I may not know any of those people on that list, but the next step that I do is I’m going to go back to my fi les and see if I have a fi le on any of these people. I will then go to the state and see if any of these people have already been reported as positive. And when that report comes back or when we have a fi le that one of those four people is positive, that becomes a fl ag. (emphasis added)

When Mitch refers to “my fi les,” she is referring to the local health department’s records on HIV-positive clients. However, these fi les are only likely to include people who live in the county and have visited the health department for services. In order to refer to a much broader data set, Mitch goes to “the state” in order to cross-check the name against the state’s name-based reporting data that describe everyone in the state ever diagnosed as HIV positive. If a person named as a partner by a cli- ent who did not report having sex with any HIV-positive people turns out to be listed in that database, an investigation is launched.

Under this system, HIV-positive clients—typically the poor—who are forced to rely on the public health infrastructure to assist in (or in some cases provide) their medical care and other services are more likely to be noticed. By visiting the local health department more frequently, their names are more likely to be recognized if they are ever named as a prior sexual partner. For example, Charlie, who coordinates the HIV/ AIDS programs in a diff erent jurisdiction (9) explains:

I was actually testing another individual who [was] testing for everything. I tested; they were [HIV] positive. . . . After they gave me one of their partner names, I knew the name immediately. . . . I didn’t say anything at that time. I just said [sighing], “Oh, I know that name.” Went back, sure enough, con- fi rmed that this person was already positive.

When health offi cials such as Charlie report cross-referencing the names of past partners against the state’s confi dential name-based database, this is not an automated process. It requires picking up the phone and making a call to a state health offi cial, an extra eff ort that jurisdiction offi cials may be more likely to take when their suspicions are aroused.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

76 | Punitive Disease Control

Of course, many HIV-positive people disclose to their HIV-negative partners. Even so, some health offi cials regard HIV-positive people with a certain level of suspicion when they report a relationship with an HIV- negative partner. Cash (HIV/AIDS coordinator, jurisdiction 8) was con- cerned after an HIV-positive man came to the health department for regular STI testing and tested positive for gonorrhea. The client assured Cash that he had disclosed his status to all his partners, including his HIV-negative girlfriend. But Cash was not convinced:

So I’m thinking, okay, it’s possible maybe he didn’t do disclosure. I’m going to call [his partner] in for regular STD, and then when she reports that she’s never had anybody who’s been a sex partner who’s HIV positive . . . then there will be that whole question.

But when his partner came in to get tested, she named him as a partner and said that he had, in fact, disclosed his HIV-positive status. “It’s like all the pieces fi t together. He did tell her.”

The pieces do not always fi t together, however. When they do not, policing public health requires carefully navigating the numerous health privacy regulations that limit what health offi cials can and cannot do to intervene. For example, health offi cials often described immediately rec- ognizing a named partner as someone they already knew to be HIV positive in the community. But strict patient confi dentiality laws forbid them from revealing that information, which is protected by laws such as the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA). In addition, Michigan law makes it a misdemeanor for someone to reveal another person’s HIV-positive status without his or her express permission, a provision included in the same set of laws as the HTTO regulations.

These regulations are the reasons behind Mitch’s eff orts to word her questions to clients during partner services interviews “carefully.” For example, let’s say that a newly diagnosed client reports having had sex with two people: John and Bob. Even if Mitch were to recognize Bob’s name as that of an HIV-positive client, she cannot directly ask the client whether he knew that Bob was HIV positive. That would be tipping her hand. To prevent revealing more than she is legally allowed, Mitch says, “We just make it very generic: ‘Did any of these people ever tell you that they were HIV positive?’ ”

While health offi cials never described breaking patient privacy laws outright, they did describe navigating them in ways that might be described as bending the law. For example, Shirley (HIV/AIDS coordi-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 77

nator, jurisdiction 4) describes one case in which a public health nurse struggled to get an HIV-positive client who had recently been released from prison to disclose to his new girlfriend:

The nurse asked the new positive man, “Have you told your partner about your HIV status?” The new HIV guy said that he hadn’t told his partner yet, and [the nurse] . . . told him, “You need to tell her. If you don’t tell her I will.” So [the nurse] gave him two weeks, made both of them an appointment in two weeks’ time, and told him that “when you come to that appointment, if she hasn’t been told about your status yet by you, then I’m going to tell her.”

In this case, the nurse did not actually reveal the client’s HIV-status to the partner—the nurse merely threatened to do so. When the couple returned two weeks later, things did not go well:

It was kind of interesting how he told her, because he waited until they were in the waiting room, waiting for the appointment. They were waiting in the waiting room with families, with their children waiting for immunizations. It became physical.

That the situation described by Shirley became physical is not particu- larly surprising; disclosing one’s HIV-positive status to a partner is rife with emotional volatility. HIV-positive women are particularly vulner- able in these situations; reports of violent reactions from male partners are common. In 2012 and 2014, for example, two HIV-positive women were murdered in Texas by their male partners when the women’s HIV- positive status was discovered.11 And as the instance described by Shirley demonstrates, even heterosexual men can risk physical retalia- tion from their partners when disclosing.

Although the nurse did not, in fact, disclose the partner’s status, reports suggest that this sometimes happens—and that such reports can directly result in criminal charges being fi led under Michigan’s felony HIV disclosure law. A man in Kent County pleaded guilty in 2000 to charges that he did not disclose his status to a woman with whom he had a sexual relationship. According to a newspaper report, “Authori- ties have said the woman had no idea [the defendant] was infected with AIDS until contacted by a health worker who knew about [his] condi- tion. The victim then went to police.”12

the condom question

Partner services programs are not the only tools health offi cials have for catching potential health threats. Local health offi cials in Michigan

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

78 | Punitive Disease Control

repeatedly described using the test results of other sexually transmitted infection—such as syphilis, chlamydia, and gonorrhea—as evidence of “recalcitrant” behavior. CT (disease investigation specialist, jurisdiction 10) describes a recent case involving a local HIV-positive man:

He then had picked up actually gonorrhea and syphilis in one occasion. . . . It became obvious that the person picking up these diseases was likely not using the appropriate protection. Bacterial STD is probably the most objec- tive thing to look at as far as the person being in an unsafe sexual activity. The people who are actually picking up those STDs are probably not using protection. What we fi nd is that they are oftentimes too not disclosing their HIV status. It’s almost a given in that regard.

CT viewed a diagnosis with an STI as evidence that individuals were having sex without protection—referring presumably to the use of con- doms during anal or vaginal sex. Many health offi cials agreed, frequently citing positive STI results as a common way that health threats are iden- tifi ed. When I asked Fern (disease intervention specialist, jurisdiction 11) how most health-threat cases came to her attention, she replied:

Well, usually it’s all of a sudden their name appears with another STD . . . All the STDs have to be reported on the [Michigan Disease Surveillance System]. So . . . if the [syphilis coordinator] has any syphilis cases where they’re also showing that they’re HIV positive, then she and I work together, and . . . if I’ve got a case report, then it goes to a “health threat to others,” more or less. Because if they come up with syphilis, they’re having unprotected sex.

The logic inherent in this perspective is that sexually transmitted bacterial infections such as gonorrhea are necessarily the result of sex without con- doms. But this is not necessarily true. While latex condoms can reduce the risk of transmission of STIs such as gonorrhea, they do not eliminate it.13

In a letter written to me after these fi ndings were originally reported, Michigan’s state health department explicitly denied that an STI diag- nosis is suffi cient grounds for classifying someone as a health threat. But reports from local health offi cials suggest otherwise: in many jurisdic- tions, local health department staff described STI screening as a primary technique for identifying health-threat cases.

Although many people reported viewing STI results as evidence of a health threat, it is important to note that not everyone agreed. Mark, a disease investigation specialist in a large, urban jurisdiction (3), says he diff ers from others on this point:

A client comes here—and they are HIV positive—and to the STD clinic, and the doctors see there was syphilis; they just made it a health threat. Me,

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 79

myself, I don’t consider them a health threat, because they could have had sex with their partner and told them they are positive, so you never know.

That there is disagreement on the issue suggests that where a person lives and who manages their case fi le may play an important role in shaping whether they are labeled as a health threat.

Mark’s comments illustrate the complicated logic of interpreting STI tests as evidence of health-threat behaviors. How did Fern make sense of this connection?

Hoppe: A positive STI test result . . . you all see as evidence of nondisclo- sure. . . . Why is that interpreted as a potential health threat?

Fern: Well, they’re having unprotected sex. But, again too, sometimes what I come up against is when I do get there, they’ll say, “Well, I did tell them.” You know, “They’re positive also.” I say, “Well, that doesn’t mat- ter.” You know, “Just because they’re positive also, you still need to be using protection.”

Fern’s concern in this case was not that the client might not be disclos- ing HIV-positive status but that the client was not using condoms. Even in cases where their partners are also HIV positive, Fern insists that HIV-positive clients are required to use condoms. Contracting an STI is evidence that they failed to do so and is used as evidence to label an HIV-positive client a health threat. This raises the question of whether HIV-positive people can legally have sex without condoms in Michigan.

In a 2008 e-mail obtained through a Freedom of Information Act request by journalist Todd Heywood, the state health department’s legal director, Denise Chrysler, clearly describes how she interprets Michi- gan’s health-threat statute:

Would an HIV-infected individual who has unprotected sex be a health threat to his/her sex partner? Are there any circumstances where unprotected sex not be a health threat? . . . It sounds like the individual would always be a health threat, even if the individual’s partner is also HIV positive. An HIV- infected individual is not relieved of all responsibility to prevent transmis- sion simply because he/she has warned their sex partner of the HIV-infection. We (in public health) and the infected person still have responsibilities to prevent the spread of serious communicable disease even if the infected indi- vidual’s sexual partner consents to the risky behavior. In fact, under section 5203, the local health offi cer shall issue a warning notice against such an individual.14 (emphasis added)

The state health department maintains that Chrysler’s statement was not an offi cial legal opinion.15 However, the fact that its legal director believed

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

80 | Punitive Disease Control

that an HIV-positive person engaging in sex without condoms “would always be a health threat” suggests that the law is open to interpreta- tion—contradicting the state’s assertion that the law is unambiguous.

In many cases, local health department policies refl ect an interpreta- tion of the health-threat statute as requiring HIV-positive people always to use condoms. Five jurisdictions have developed “client acknowledge- ment forms” that newly diagnosed HIV-positive clients are asked to sign immediately after learning that they have tested HIV positive.16 While there are various versions of the form, the most controversial language was found in forms that asked clients to place their initials beside the following statement (quoted from the form used in Macomb County, shown in fi gure 11): “You are required to inform individual/s of your HIV infected status before sexual contact. You and your sexual partner/s must use a barrier protection such as latex condoms, dental dams, and/or female condoms in a correct and consistent manner.”17 While most forms were more ambiguous and simply referred to a requirement that clients engage in “safe behaviors” and/or “risk reduc- tion,” the language used in some of these forms suggests that at least some health offi cials believe their HIV-positive clients must use con- doms at all times.

These forms are not just a way to inform clients of their legal respon- sibilities. They serve as a means of holding HIV-positive clients legally responsible for not disclosing their HIV status at a later date. As Mitch reports, these forms were developed after clients suspected of not dis- closing simply denied knowing they were HIV positive in the fi rst place:

Sometimes, they’ll try and say, “Well, nobody ever told me I was positive. I tested but I didn’t get my results. They didn’t tell me I was positive.” And that’s why—we do a lot of paperwork now about, a lot of the education that we do, we actually have to have the people sign, anytime we have a positive, we go through felony law and do all of this education: what you need to do and what you don’t need to do. Get them hooked up with support services and then we make them sign a paper that basically says, “I’ve been educated. I know that I can’t do this without disclosing my status. I’ve been warned of that and I could potentially have charges brought against me if I don’t do that.” We make everybody sign that, so that when we have that piece of paper and the name, say this person were to come up again all of the sudden, we’ve got that on fi le and we would say, “You can’t tell me that you didn’t know that you were positive, because we’ve got this on fi le.”

These forms have already played a role in prosecuting HIV-positive peo- ple in Michigan. For example, a news report on the 2007 sentencing of a man to 5–15 years in prison for failing to disclose his HIV-positive

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

figure 11. Sample client acknowledgment form. Source: Macomb County Health Department.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

82 | Punitive Disease Control

status to two sexual partners noted, “Police say [the defendant] knew what he did was illegal because he had signed a disclosure form with [a neighboring county’s] Department of Public Health.”18 Other reports show these forms have been used to help prosecute HIV-positive defend- ants in three additional counties.19

As data were being collected for this project, journalist Todd Hey- wood obtained several of these forms and published a series of articles highlighting their use.20 AIDS activists around the country expressed outrage. One of the nation’s leading organizations working on HIV and the law, the Center for HIV Law and Policy, spoke out against the forms. Its executive director, Catherine Hanssens, told one media outlet:

The form . . . treats all types of sex as equally risky, and all persons with HIV as equally infectious. . . . This is a level of medical inaccuracy that is unac- ceptable from a state Department of Health. Lawyers who think that ban- ning only unprotected sex is legal might want to acquaint themselves with the U.S. Constitution and legal opinions which have long since established the decision to conceive children as a Constitutionally-protected, fundamen- tal right.21

In my interviews, some local health offi cials echoed these concerns. Mac (HIV/AIDS coordinator, jurisdiction 6) criticized client acknowl- edgment forms because “it takes that right away from them”:

Mac: There are some agencies that actually have them sign that they are aware of that law. We don’t have anything at the health department stat- ing that. And I don’t know . . . I kind of feel . . . I guess I have mixed feelings on that.

Hoppe: In what way?

Mac: In the way that it was stated in the form that was sent to us. It was basically . . . I just feel like it doesn’t . . . it takes that right away from them almost. I don’t know how to explain it. Some of the wording just didn’t sound—I don’t want to say good to me. I don’t know. It was just something about the wording of it. I don’t know how to explain it. . . . But basically saying, “You”—and I’m not saying that they don’t have to follow it, they do. But it’s more strong and stern and to the point where it’s like “Oh my gosh. You have to do this.” And I know they have to, but it just didn’t sound right to me.

Mac’s comments suggest that the controversy over the use of these client acknowledgement forms reached within health departments themselves.

In the wake of these articles, the Michigan Civil Rights Commission expressed interest in investigating the use of these forms, raising the stakes of the debate considerably.22 The state health department issued

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 83

a carefully worded statement, saying that it was changing its position by advising “local health departments that if they are going to use client acknowledgment forms . . . —and there is nothing saying they must use such forms—they need to quote the law.”23 However, state health offi - cials did not require that local health departments discontinue their use.

“living in the salem witch trials”

Health offi cials are not the only ones in the community keeping tabs on people living with HIV. Community members are also actively engaged in policing their HIV-positive neighbors. In fi ve health department juris- dictions, offi cials reported regularly receiving what they bureaucrati- cally term “third-party phone reports.” These calls typically involve a resident phoning the health department to report that someone they believe to be HIV positive is having sex without disclosing his or her HIV status. These callers do not report actually having sex with the accused; instead, they off er a variety of explanations for how they know an individual is not disclosing his or her status (usually word-of-mouth rumor).

These calls are so common that the state health department devel- oped guidelines for handling them. According to guidelines distributed to local health departments by the MDCH in 2006, offi cials should “determine if the information has merit” by

1. Securing the full name, address, and if available, the telephone number of the third party.

2. Requesting that the third party submit a written statement that describes the behavior/s of the suspected carrier, and supports the allegations.

3. Requesting that the third party provide the local health department with the suspected carrier’s name and other information such as an address or telephone number to locate the suspected individual.24

These instructions turn out to be fl exible. The standards for determin- ing the merit of third-party denunciations may be relaxed where (1) the reported individual has previously been identifi ed as an at-risk partner during contact tracing, or (2) there have been repeated allegations con- cerning the same individual by diff erent parties.

Health offi cials were often ambivalent about relying on this kind of rumor mill to identify health-threat cases. For example, Therese (dis- ease intervention specialist, jurisdiction 5) acknowledged that most phone calls she received were “bogus claims” that were sometimes maliciously motivated. To illustrate this, she recounted a case in which

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

84 | Punitive Disease Control

the health department received a series of coordinated phone calls all reporting the same individual:

[People around here are] very judgmental and just angry. And they don’t like to talk about controversial subjects. It’s an older population that was calling in. It wasn’t like I had somebody young calling in. I had somebody in their sixties calling in, and [they were all older]. And it turns out they all actually belong to the same church. As you may know, it’s very big around here too in our Black churches—in our African American churches here. They do express . . . um . . . not good things about people who are gay and homo- sexual and people who have HIV and AIDS and so on and so forth. . . . [The person they were calling in about] was a female who had male partners, however . . . that doesn’t . . . you know, it . . . they were Black and so . . . in the churches around here, somebody told their business and everybody just kind of ganged up. A lot of people around here . . . you think you’re . . . liv- ing in the Salem witch trials, basically, and it’s terrible.

After investigating these claims, she discovered that the callers were all members of the same church. Linking the local church’s negative views about homosexuality to its prejudices against HIV, Therese speculates that it was the churchgoers’ judgmental attitudes that resulted in callers “ganging up” on one person—a coordinated attempt that exemplifi es how communities can police their HIV-positive neighbors.

Notably, race and gender played a signifi cant role in the way that health-threat cases were described by health offi cials in several jurisdic- tions in which third-party phone reports were common. In the incident above, Therese notes the infl uence of Black church leaders in stigmatiz- ing HIV and nonnormative sexuality more generally. That the church leaders were orchestrating an eff ort against a Black woman (rather than a man) refl ects the higher stakes women face in navigating HIV stigma. Indeed, that Therese referred to a campaign against women—the Salem witch trials—suggests that Black women who are HIV positive in this community may face a particularly noxious stigma. Gossip and rumor thrive and fester in this context, helping to feed hostility in the commu- nity against HIV-positive Black women who step out of line.

Indeed, in jurisdictions where health offi cials discussed race explic- itly, Black women featured prominently in their comments. For instance, in another jurisdiction across the state, an HIV/AIDS coordinator in jurisdiction 3, who chose the pseudonym Sentient, reported that third- party phone reports were a common way that health-threat cases were identifi ed. However, Sentient also noted a peculiar annual trend: During the holiday season, the health department received numerous prank calls:

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 85

Hoppe: Can you walk me through—point A to point B—in terms of how those [health-threat] cases come onto your radar screen?

Sentient: Usually, they come in the form of a phone call. If they call the health department’s general number, they usually go to the administrative fl oor for HIV . . . and then they take down the person’s information and they call me and give it to me and I call the person back. And usually the person will say, “I know someone who’s HIV infected and they’re having unprotected sex.” Or “I was infected by this particular person, and I want to know how to report them or what I should do.” During the holiday season, we usually have unusual claims. Like, they’re a star and— Aretha Franklin seems to be a very common one. Diana Ross. And they have been infected and they’re infecting all these people in the area.

Though it could well be a coincidence that both celebrities Sentient named were African American women, it is also plausible that this pat- tern is the result of community members perceiving Black women’s sexuality as threatening—a pattern refl ected in the scientifi c literature.25

In the remaining jurisdictions in which third-party phone reports were common, health offi cials gave few clues about the race or gender of the individuals involved. Because of the delicate confi dentiality issues involved in these interviews, offi cials sometimes chose to talk neutrally about individuals—avoiding male or female pronouns or other demo- graphic markers. While there were scant indications about the person doing the calling or about whom the caller was reporting, it was clear in one instance that a concerted eff ort had been made against a specifi c individual. Following up about a recent case that Lucy (one of the two disease intervention specialists in jurisdiction 10) had described, I asked how that case came to her attention:

It was just a community person—somebody from the community concerned about somebody in their neighborhood who they were thinking had HIV. And I guess they just felt that they needed to report it to the health depart- ment as a concern. Preliminary record search, nothing was found on this individual. The caller was unwilling to give their information—and it was a situation where there were other people in the background, kind of egging the person on the phone on. So in that case, after I briefed my supervisor about it, no further follow-up was done.

The presence of “other people in the background” whom Lucy sus- pected of egging on the caller suggests a collective community policing eff ort. In this case, Lucy attempted to verify whether the accused person was known to the state to be HIV positive. The person was not, and thus the case was closed. However, the fact that Lucy took the call, recorded the information about the person being accused, and con-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

86 | Punitive Disease Control

ducted a record search suggests that she nonetheless determined the anonymous group report deserved further inquiry. She did not specu- late about what she might have done had the accused person been found to be HIV positive.

This kind of community policing takes several forms. In one county, HIV stigma took on a life of its own in the form of a legendary “book down by the river,” a near-mythical object that allegedly contains the names of everyone in the area who is HIV positive. Therese describes this book:

You know, the big thing we have here is people talk. And that’s how most things are done around here, how most complaints are fi led. In fact, it all usually starts with the same phone call. They’re like, [impersonating stereo- typical Black female voice] “Well . . . I’m calling because I know . . .” And they’ll go on this whole rampage, like “my cousin’s baby’s daddy’s uncle who watches TV and they produce for the show”—all these weird things! They fi nd every string to connect this person to them. “And I just want to verify if that’s true.” [And I ask,] “Well, why do you want to do that?” “Well, because I know . . . I can’t fi nd it today, but I know that there’s a book.” Oh my God, this whole county swears to God that there’s a book that’s down by some railroad tracks in [name of town] by the river. There’s a book that has all the HIV-positive people’s names in it.

During our interview, Therese gestured to a map on the wall to identify the general area in town where people say the book can be found. Emphasizing that it was “not a good area,” she noted that she usually brings along a male coworker whose physicality resembles his nick- name, “Muscles,” when her job requires her to visit this particular area. The neighborhood in question is almost entirely African American, plagued by widespread poverty and high rates of unemployment. Like countless towns across the state, the manufacturing jobs that once pro- vided the lifeline for this neighborhood are long gone.

In all likelihood, the book probably does not exist as a real object to be found and consulted. Assuming that the book is more legend than reality, what social purposes might this mythical volume serve? Through years of gossip and rumor, “the book” has become a way for people to trade, seek, and reveal information about others in the community without anyone being held responsible for doing the telling. Therese explains that people who move into the county visit the health depart- ment and demand to see the book: “They will say the same exact thing: ‘Yeah, I just moved here and I heard that there’s a book here. And I wanna see the book of all the positive people.’ ” As described in the

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 87

beginning of this chapter, it is illegal in Michigan for anyone to disclose another person’s HIV-positive status without their express written per- mission. The book, then, may well provide the perfect alibi for commu- nity members looking to trade information without being held legally liable.

The rumor of a list of everyone in the county who is HIV positive was not idiosyncratic to this jurisdiction. Health offi cials in another jurisdiction told a similar tale of people asking to see “the list.” Doctor Q (disease intervention specialist, jurisdiction 14) laments:

Well, and you’d be surprised too . . . the people that come in and want to see the list of HIV-positive people [laughs]. . . . They think it’s just like the post offi ce, where you’ve got your “Ten Most Wanted”—well, we got the HIV- positive list here! I had some woman here, God, it was probably six months ago; she came in with her two teenage daughters. She wanted to see the list. And I said, “We don’t keep a list of HIV-positive people.” “Oh, come on now, I know you got a list of HIV”—and I said, “And if we did, why would you want to see that list?” “ ’Cause I want my daughters to look at it, so they know who not to have sex with.” I wanted to reach across there and slap her. “You stupid bitch, is that how you teach [your daughters]: ‘Here’s the list. Don’t fuck any of these guys’ ”?

After years of working in the same job at the health department, Doctor Q was secretly planning to call it quits. His frustration with his job and his clients was, to say the least, palpable.

However, Doctor Q’s frustrations may have unintentionally revealed much about the contradictions of disclosure as public health impera- tive. As he points out, his client was seeking the identities of everyone in the area known to be HIV positive so that her daughters could avoid having sex with them. The state actually does possess that information, even if the county does not keep a list available for the public to consult. So the client was not as “stupid” as Doctor Q inferred. Obviously, the client’s desire to gain access to such information was in direct confl ict with medical confi dentiality. However, her desire to know the identities of HIV-positive people in the community makes sense given that health offi cials promote HIV status disclosure as a public health strategy. Promoting disclosure implies that knowledge is prevention: if an HIV- negative person knows who is HIV positive and who is HIV negative, then he or she can make informed decisions that will reduce the risk of contracting HIV. If this is your primary HIV prevention strategy, then having a list of HIV-positive people is the equivalent of a crib sheet for a college exam.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

88 | Punitive Disease Control

“scare tactics”

So what happens after someone is fl agged for investigation? Health departments have a range of options for handling potential health- threat cases. Most departments described a tiered approach to manag- ing these cases. First, the person is issued a tersely worded warning let- ter telling them that they have been identifi ed as putting others at risk; reminding them of their legal obligations; and warning them that if they are identifi ed again, they will be formally labeled a health threat and legal action against them will be taken. Figure 12 is an example of the model warning letter distributed by the Michigan Department of Com- munity Health to local health departments as guidance in 2006.

Along with the warning letter, health offi cials meet with the client to off er counseling and other services. If the client does not comply with health department demands, offi cials then move to petition the probate court to intervene. The entire process is painstakingly depicted in policy documents obtained from local health departments. Figure 13 illus- trates a condensed version of the typical process as it was reported to me by local health offi cials. The process begins with a report of “recal- citrant” behavior either as a result of a positive STI test or from fi rst- party witnesses (prior sexual partners) or third-party complainants (neighbors, friends, etc.). Offi cials consider a number of factors in their assessment of each case, including whether a client has a mental illness; whether health offi cials believe the allegations have merit; and whether the complaining witness is willing to testify in court.

If the complaint came from a third party, health offi cials reported treating it with a great deal of skepticism. Mitch, the HIV/AIDS coordi- nator from jurisdiction 2, reported having serious doubts about the validity of information obtained from informants over the phone. Despite these doubts, Mitch indicated that if the accused person was in fact determined to be HIV positive, someone from the health depart- ment would “make an appearance”:

We get a lot of phone calls: “I know that so-and-so’s positive and I know that they’re sleeping around with a whole bunch of people and not telling their status.” If that person is not willing to come in and write out a statement, then we may look for that name and see if there is actually a report on that name. And then we may try and make contact and go, “Hey, how’s things going? You remember that felony law thing that we talked about? You doing okay with that?” [laughs] Kind of just make an appearance with them. But we don’t put a whole lot of . . . a whole lot of . . . what do I wanna say? We have a lot of people that call us and complain about other people, and a lot

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

figure 12. Model warning letter. Source: Michigan Department of Community Health.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Determining a Health Threat to Others

A third party phones the health department to

report their suspicions that an HIV-positive person

in the community is not disclosing their status.

A client newly diagnosed with HIV or another sexually transmitted infection reports

having sex with a person confirmed to be HIV-positive using state and local records.

An HIV-positive client is diagnosed with a secondary infection, such as syphilis or

gonorrhea.

An investigation is launched against the HIV-positive client in question to determine if they

should be labeled a health threat to others.

If they are determined to be a health threat, the local health department sends a “cease and desist”

letter through certified mail.

figure 13. HTTO identifi cation. Design: Jonathan Lefrançois. Illustration: Justin Karas for Pulp & Pixel.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

Once labeled a “health threat,” the HIV-positive client may be required to undergo testing or counseling

through the health department.

Another certified letter may be issued or civil proceedings may be brought against the client to

force them to be quarantined or (more likely) undergo counseling and testing.

If the same HIV-positive client

is again identified as engaging in behavior deemed a threat to

public health

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

92 | Punitive Disease Control

of the time it ends up being a he-said-she-said type of thing, because so-and- so is mad at so-and-so because they slept with so-and-so.

Mitch stressed that this “appearance” would be more akin to a check-in than a serious investigation. However, while these meetings may be noth- ing more than a check-in on paper, having a health offi cial show up on your doorstep asking questions about your knowledge of the HIV disclo- sure law is likely to have a chilling eff ect: We’ve got eyes in the commu- nity, don’t do anything stupid. And that eff ect is presumably intended.

Whether they are delivered by informal “appearance” or certifi ed cease-and-desist letter, health department demands are not always heeded. Doctor Q, a disease intervention specialist, explained his par- ticular frustration with a client deemed a health threat to others in 2008. The client was identifi ed as a health threat after “showing up here every 3 to 5 months with a new STD. . . . His excuse was ‘I would go down to [the city], just these parties, probably get drunk and high, pass out, and I’d wake up and somebody would be having sex with me.’ ” But Doctor Q believed he was lying. “I might buy that once or twice . . . But hey, after the twelfth time you’ve had a disease, I’m not buying it.” After “probably the eighth time over a couple of years” of testing posi- tive for a secondary STI, Doctor Q called the state’s partner services director to discuss his case. After a certifi ed warning letter was delivered to his home, the client agreed to meet with health department staff . “He came the fi rst time, then basically blew us off . He was supposed to get into a group for positives . . . which he said he didn’t want to get into, because he didn’t want people to know that he was positive.”

Frustrated with the client’s disregard for health department demands, Doctor Q called the county prosecutor’s offi ce. An assistant county prosecutor met with health department staff but informed Doctor Q that the county could not pursue criminal charges without testimony from a partner. “That’s basically where I became disillusioned with the system,” Doctor Q lamented. Echoing the punitive attitudes of Ameri- can social conservatives in the early years of the HIV epidemic, Doctor Q reported that he told the client he wished he could have his status tattooed on his body: “I told this guy . . . if it was up to me, if I was king [of the county], I would have a tattoo across his pubic hair: ‘I’m HIV positive.’ Where if somebody rips your pants down while you are passed out, then at least they can read, they can see that you are HIV positive.”

Policy documents obtained from several health departments refer to the need for testimony from previous sexual partners in order to proceed

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 93

with criminal legal intervention. Even before the warning letter is issued, health department staff are instructed to advise the complaining witnesses that they could meet with law enforcement personnel to discuss their complaints if they so choose. Health privacy laws sometimes make this diffi cult, however, in cases where health department staff discover a reported partner is HIV positive but the original client did not report knowing that any of their partners were HIV positive. How do you tell someone to call the cops if they do not know what to report? In Mitch’s words, handling such cases requires a bit of “tiptoeing”:

There’s a lot of “Well, we’d like you to come back into the offi ce and talk to you a little bit more about your situation.” That’s when we’ll try and say, “Have you had any other partners? Have any of your other partners ever said anything about being HIV positive?” At that point, sometimes we might say, “We’d like you to report this to the police. We’d like you to contact the police.” Recently we had somebody we had called back to come in and do that, and then the person never showed. We were going tell them to contact the police because we have a person who is being a “health threat to others.” But the person never showed up.

Policies for interacting with the police may vary by county. But in at least some jurisdictions in Michigan, health department staff encourage clients to report their complaints to law enforcement.

Rather than personally appealing to the police or to the prosecutor, most health offi cials use the threat of legal intervention in order to frighten clients into compliance. When asked what it means for clients that are labeled a health threat, Debra, an HIV/AIDS coordinator in jurisdiction 13, responded that it’s mostly a “scare tactic”:

I let the [disease intervention specialist] build the relationship, get the infor- mation, try to see if our tactics on changing behavior work, and if they don’t work, then I will go through the process of getting the HTTO, or try to bring in the law. But I think we just use it as a scare tactic. The fact is we can send people to jail. That is a fact. But at the same time, we don’t want the com- munity to stigmatize testing, or the health department, or that sort of thing. But my thing is that I can recognize when someone is being malicious versus somebody just having diffi culty disclosing.

Debra’s scare-tactic approach refl ects how most Michigan health offi - cials viewed the value of the HTTO law in their own work. Ninety-six percent of health offi cials I interviewed believed that health departments should strive to use public health interventions before calling the pros- ecutor’s offi ce (see table 1). However, even if most health department staff try to avoid immediately involving law enforcement, the strategies

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

94 | Punitive Disease Control

table 1 what do health officials think about michigan’s “health threat” laws?

Survey Item Agree Disagree Neutral

In any given “health threat to others” case, the HIV-positive person should not be charged with a crime unless one of their partners tests HIV-positive as a result of having sex with them.

12% 80% 8%

Laws that mandate HIV-status disclosure for HIV- positive people should be repealed.

0% 76% 24%

If an HIV-positive person was known to have used condoms consistently with their partners, they should not be criminally charged for failing to disclose their HIV status to their partners before having sex.

8% 64% 28%

An HIV-positive person should only be criminally charged for failing to disclose their HIV status if there is evidence that they were engaging in high-risk sexual behaviors with their partners.

28% 56% 16%

Laws requiring that HIV-positive people disclose their HIV status before having sex help to reduce the number of new HIV infections each year.

44% 20% 36%

Public health offi cials should fi rst attempt to intervene in “health threat to others” cases by attempting behavioral counseling and/or other health interventions before referring a person for prosecution.

96% 0% 4%

note: In 2012, I asked every health department offi cial I interviewed to complete a survey regarding their attitudes towards “health threat” laws and HIV/AIDS more generally. These are their responses to questions about the law and cases brought under it. They are ordered from the statements most disagreed with to the statements agreed with by the most offi cials.

and techniques health offi cials employ to identify health-threat cases can have grave legal consequences for HIV-positive clients.

Three cases help to illustrate these consequences. First, in 1992, a woman in Muskegon County, Michigan, became one of a handful of peo- ple living with HIV known to be legally quarantined in the United States. The media widely reported the case of Brenda J. (discussed more exten- sively in chapter 5), which was made particularly controversial by her IQ of 72—just two points above the medical threshold for an intellectual dis- ability diagnosis.26 After reports surfaced again that she was having sex without disclosing her HIV-positive status, the Muskegon county prosecu- tor charged her under Michigan’s felony HIV disclosure law. She was con- victed in 1995 and sentenced to thirty-two months in prison.27

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 95

In another case in Muskegon County, in 2003, news reports revealed that a police investigation explicitly began when the health department contacted police. According to a May 22, 2003, news report, “An investigation by police was started last week after the Muskegon County Health Department contacted the prosecutor’s offi ce.”28 That investiga- tion was triggered by an HTTO notice issued by the health department. “Prosecutor Tony Tague said that a ‘warning notice’ had been sent to the woman by the health department on May 7. . . . The investigation revealed that [the defendant] had sex on May 9 and 12 with the victim without telling him she was HIV positive.”29

This appears to not have been the only time Michigan health offi cials have forwarded cases to law enforcement for investigation. Documents obtained by a Michigan-based journalist reveal that the Grand Traverse County Health Department wrote to the county prosecutor about com- plaints against a local HIV-positive man in February 2009. The recently unearthed memo was prompted by allegations to health department staff that the man—referred to as Mr. X in the redacted memo—was engaging in “unprotected” sex with partners he met online and in pub- lic restrooms. In the memo, the health department director writes:

I suggest three options: 1. This Mr. X be warned by you and/or prosecuted for failure to inform his sex partners of his HIV status. 2. There be a “sting” operation by the police at the public bathroom where this person is reported to have had his encounters. 3. That I go public and inform the public via the media that this activity is happening and that anyone who has engaged in this behavior should get tested for HIV and other STI. I would not divulge the name of the person or the public bathrooms. 4. All or two of these options.30

Despite these eff orts, follow-up requests to the prosecutor’s offi ce sug- gest that Mr. X was not criminally charged.

Of course, these cases are atypical examples. The fi rst case involves the only person known to have been placed under quarantine for HIV in Michigan. And although the following cases suggest some coordina- tion between health departments and prosecutors, health departments did not routinely send memos to county prosecutors recommending sting operations. Nonetheless, these cases illustrate the high stakes involved when health departments become arms of the police.

why disclosure?

Reports from around the country reveal that the tactics employed in Michigan to control HIV-positive people are not unique. A North Caro-

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

96 | Punitive Disease Control

lina court found an HIV-positive man guilty of violating his probation in 2008 when he tested positive for an undisclosed sexually transmitted infection at a local health clinic. He had been arrested “after Wake County Public Health offi cials contacted his probation offi cer with information that he had possibly violated court orders by having sex without a condom. . . . Health offi cials became aware of the DJ’s viola- tion after he contracted another sexually transmitted disease that could have been prevented by the use of a condom.”31

In Indiana, a county health department administrator went on local television news in April 2015 to report that the health department was pursuing criminal charges against an HIV-positive client that it deter- mined “has infected eight people with HIV, one with AIDS.” (As it is not possible to infect someone with AIDS, presumably the health department staff person meant that one of the partners’ HIV infections had progressed to AIDS.) The health department reportedly knew the person was aware of the legal obligations because “the person in ques- tion signed a document saying that person ‘would’ warn others.” In Tennessee, a judge cited a similar information form designed by a local health department as a basis for enhancing the sentence of a criminal defendant.32 Reports suggest that health departments in additional states, including Mississippi, North Carolina, and Florida, currently or have recently employed such forms.33

In other cases, local health departments appear to have violated con- fi dentiality laws in ways that facilitated the prosecution of people living with HIV. In a criminal case reviewed for the analysis in chapter 5 of this book, for example, a Tennessee prosecutor revealed that a woman pressed felony HIV exposure charges in 2002 after the local health department informed her that a man she reported as a partner during a partner services interview was HIV positive—echoing several of the statements made by local Michigan health department staff earlier in this chapter.34 This report resembles a previously mentioned case from Kent County, Michigan, in 2000 in which court reports revealed that the complainant learned of the defendant’s HIV-positive status directly from a “health worker.”

What are the consequences of a local health department that begins to act like the police? At the most basic level, one likely outcome is that people will think twice before speaking candidly to health offi cials. Studies since 1996 have shown that marginalized communities often fear disclosing sensitive information to medical providers because they do not know how that information will be used.35 In this chapter, we

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

The Public Health Police | 97

have seen that Michigan health offi cials engaged in surveillance prac- tices that they did not disclose to their clients. For example, when they asked newly diagnosed clients if any of their partners disclosed to them that they were HIV positive, they did not preface that question with an explanation that they were trying to catch lawbreakers. This lack of transparency directly confl icts with the public health ethical principle that “where government authorizes or mandates the collection of iden- tifi able health data, both the data to be collected and the reason for collection should be a matter of public record.”36

But policing public health and punitive disease control more broadly may have other, even more harmful eff ects that are diffi cult to predict. Clearly, some people viewed the health department in much the same way that they viewed the police. If there is a person in your neighbor- hood causing trouble, who are you going to call? At least in some cases, the answer appears to be your local health department. By accepting their phone calls and collecting their information, health offi cials are inviting community members to participate in the naming, shaming, and blaming of their HIV-positive neighbors. This may encourage com- munity members (like the “stupid” client described by Doctor Q) to seek out and trade in the HIV statuses of people in their communities, intensifying stigma and prejudice while ramping up the everyday sur- veillance of HIV-positive people.

Health offi cials participate in this network of gossip in the name of promoting disclosure. But community members may interpret this emphasis on disclosure as a license to know who is and who is not HIV positive. Public health promotes a model of disclosure that resembles informed consent in medicine, where an HIV-positive person discloses his or her status to potential partners so that they can weigh the risks and benefi ts of having sex with him or her. Community members, how- ever, trade in the disclosure of other people’s HIV statuses without their permission—using a mythical book as an alibi for their illegal behavior. While the two forms of disclosure seem unrelated, they both rely on the assumption that knowing another person’s HIV-positive status is an eff ective tool for reducing HIV risk.

But does disclosure actually work as an HIV prevention strategy? Health offi cials did not think so. While none of the offi cials believed the felony HIV disclosure law should be repealed, fewer than half (44 per- cent) believed that the law actually helps to reduce the number of new HIV infections (see table 1). Rather than a tool for HIV prevention, the law’s utility seems to be that it reinforces the belief that HIV-positive

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed

98 | Punitive Disease Control

people have an ethical duty to inform their partners of their HIV status. But the new science of HIV begs the question of why HIV-positive peo- ple should be compelled to tell others about their infection if it is impos- sible for HIV-positive people on treatment to transmit the virus sexu- ally. Why do HIV-negative people have a right to know?

This book cannot directly answer these ethical questions. However, what it can do is to explain the consequences that fl ow from punishing disease. The next three chapters explore this more closely by analyzing the criminal justice system. Who is being punished? Why? By better understanding how HIV-specifi c criminal laws are being applied across the United States, the stakes involved in these ethical debates become clearer.

C op

yr ig

ht ©

2 01

7. U

ni ve

rs ity

o f C

al ifo

rn ia

P re

ss . A

ll rig

ht s

re se

rv ed