Prior to completing your discussion, read Chapter 4 in your textbook, watch the Annie Lennox: Why I Am an HIV/AIDS Activist video, and review any relevant Instructor Guidance. For this discussion, reference the information in the “Introduction to the Mi

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Learning Objectives

1. Compare the basic biological distinctions of HIV and AIDS

2. Describe how an HIV/AIDS diagnosis affects different individual, familial, and social domains

3. Understand the clinical and social implications of an HIV/AIDS diagnosis during different stages of the life cycle

4. Demonstrate an understanding of ART regimens and other treatment methods

5. Understand the role of stigma and discrimination in screening, treatment, and prevention interventions

6. Identify the unique issues of HIV/AIDS management in ambulatory care settings

7. Describe how an understanding of the ecology of HIV/AIDS can improve individual, social, and policy issues

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CHAPTER 4Section 4.1 Introduction to HIV/AIDS

4.1 Introduction to HIV/AIDS

In June 1981, the U.S. Centers for Disease Control and Prevention (CDC) published a report on the clinical condition of five young male homosexuals who all presented the same unusual group of symptoms (CDC, 1981b). Although these individuals had previously been healthy, they were all diagnosed with Pneumocystis carinii pneumonia (PCP), a rare condition associated with a severely compromised immune system. Three weeks later, another report from the CDC documented 26 gay men in New York and California with compromised immune systems from both PCP and the cancer Kaposi sarcoma (CDC, 1981a). Although initially given the acronym GRID (gay-related immune deficiency, because of the sexuality of the men in these initial cases), this disease eventually came to be known by the acronym HIV/AIDS.

Clinical Overview HIV stands for human immunodeficiency virus. This term means several things: (a) It is a condition that can only infect humans beings (H); (b) it compromises immune systems (I); and (c) it is a virus (V), an infectious organism that invades living cells. Because HIV is a viral infection (as is the common cold), it results from exposure to a pathogen. However, HIV is more threatening than a cold virus because the human body is unable to fight it off. Once infected, people never recover, even though they may be asymptomatic. And, as with other chronic diseases, they must live with the condition throughout their lives.

Although our bodies have built-in mechanisms designed to fight disease, HIV attacks CD4-positive T cells, which in human immunology is a type of white blood cell vital to fighting off infections and foreign microbes. HIV launches its attack by first invading these cells so it can replicate; afterward, it destroys the cells. Eventually, when a person’s CD4 cells fall below a specified level, the immune system has been compromised. This criterion leads to a diagnosis of AIDS, which is an acronym for acquired immunodeficiency syndrome.

The designation acquired means that the onset of AIDS results from viral exposure rather than genetics. Exposure to the virus can consist of contact with the blood or bodily fluid (e.g., semen) of an infected individual. In practice, HIV/AIDS can be acquired in the following ways:

• Through a blood transfusion from an infected blood source, • By being stuck with a needle contaminated with HIV-infected blood (which has

occurred in the health care setting), • Through various forms of sexual activity (e.g., anal, vaginal, and oral sex), • Via contact between an open wound on the skin of an infected individual with

another individual’s open wound, • In fetal transmission from mother to unborn child, and • Through transmission from mother to child via breast milk (Falvo, 2009).

Given these methods of exposure, the principal risk factors are sexual encounters with multiple partners (especially male to male; CDC, 2012c), injection drug use, and mother-to-child exposure. The high-risk groups, and the potential ways the disease can be spread, were determined within 2 years of the first reported cases (De Cock, Jaffe, & Curran, 2011). Although initially diagnosed among gay men (i.e., men who have sex with men) and injection drug users, HIV/AIDS has also spread into the heterosexual population, and women now make up the majority of heterosexually transmitted cases (CDC, 2012c). Finally, syndrome refers to a collection of signs and symptoms that is broader in scope than a single disease. In other words, it refers to a cluster of related conditions.

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CHAPTER 4Section 4.1 Introduction to HIV/AIDS

HIV/AIDS progresses in three stages: from acute infection with the HIV virus, to clinical latency, to the syndrome of AIDS (U.S. Department of Health and Human Services [HHS], 2012d). The initial acute infection stage corresponds to the period shortly after initial infection. Within 2 to 4 weeks, patients experience symptoms that many have described as the “worst flu ever.” Clinically, this is known as the acute retroviral syndrome (ARS), or primary HIV infection. During this phase, the virus reproduces rapidly by destroying CD4 cells until the body’s immune system begins to fight back. The level of the virus at any given point is referred to as the viral load, measured in serum copies/mL. Eventually, the struggle between the virus and the body’s immune system stabilizes. After this stage, CD4 levels may start to rise again (but not necessarily to preinfection levels) while the rate of HIV production slows. This signals the transition to the second phase, clinical latency, when a person still harbors the virus but may be asymptomatic. Clinically, during this relatively stable latency period, the viral load fluctuates around a relatively stable value known as the viral set point: the average viral load between two specified end points (Kelley, Barbour, & Hecht, 2007). In general, patients with a higher viral set point will progress to the AIDS stage of their dis- ease sooner. Without medical intervention, this latency phase can last for 8 years or longer (HHS, 2009a), with a median incubation period of just under 10 years (Bacchetti & Moss, 1989).

In the third and final stage of the disease, viral levels start to rise again, while CD4 cells decline. When the number of CD4 cells falls below 200 cells per cubic millimeter (mm3) of blood, this is known as virologic failure and can occur for a number of reasons, including drug resistance, drug toxicity, or a patient’s failure to adhere to the treatment regime (HHS, 2013e). This threshold level of 200 cells/mm3 is the clinical definition for the onset of AIDS. Because of the compromised immune system, the patient will then be at higher risk for opportunistic infections (an infection that could be life-threatening) as well as other diseases. In the absence of medical interventions, people with AIDS live about 3 years; after an opportunistic infection, the patient’s life expectancy drops to about 1 year.

From this description, we can see that it is not AIDS per se that leads to death. Rather, mortality derives from secondary infections or diseases that the patient’s weakened immune system cannot combat.

Historical Overview: From Terminal Acute Infection to Manageable Chronic Condition When AIDS was first identified, the view had been forming for decades that serious infectious disease was on its way to permanent eradication, at least within industrialized western society. During the 1950s, the polio vaccine was developed, which eventually eradicated this disabling condition. In 1977, the last known case of naturally occurring smallpox worldwide was reported in Somalia. Infectious disease seemed to be relegated to the pages of history.

This triumphal narrative was shattered by the appearance of HIV/AIDS. As a result, the disease was initially compared with the devastating infectious diseases of the past; a 1987 newspaper article prophesied that the death toll from AIDS “will dwarf such earlier medical disasters as the Black Plague, smallpox and typhoid” (“AIDS May Dwarf the Plague,” 1987). By the late 1980s, the appro- priateness of comparing AIDS metaphorically to the plague was debated by journalists (Kinsella, 1989), historians (Rosenberg, 1989), and literary commentators (Sontag, 1989). In this view, AIDS represented a fundamental break with the past: It reflected the resurgence of virulent infectious disease with lethal consequences, both for those infected and for society at large. Given the initial high mortality rates, these early perceptions seemed well founded.

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CHAPTER 4Section 4.1 Introduction to HIV/AIDS

But unlike plague or cholera, HIV/AIDS did not appear to be an isolated outbreak (or epidemic) that struck and then receded in the United States. Instead, the number of infected cases grew yearly. By 1995, the number of reported cases in the United States had reached one-half million (Osmond, 2003). Thereafter, the number of both new cases and deaths began to decline. Table 4.1 demonstrates the growth of the HIV/AIDS, from 1981 to 2001. Primarily, this decline resulted from the introduction of antiretroviral therapy (ART, also known as highly active antiretroviral therapy, or HAART) drugs that were to greatly prolong the latency period of the disease. In 1987, the first drug for AIDS treatment, azidothymidine (AZT, also known as zidovudine, now abbrevi- ated as ZVD) was approved. In 1995, a new, less toxic class of AIDS drugs, protease inhibitors, had reached the market. By the first decade of the 21st century, more accurate screening tests had been developed, and the first generic version of an ART drug (AZT) was introduced (see Figure 4.1). AIDS researchers have long dreamed of producing an AIDS vaccine. However, the most recent vaccine trials have been halted because of inconclusive results (McNeil, 2013). Figure 4.1 shows the timeline of key events in the history of treating HIV/AIDS.

Table 4.1: AIDS cases and deaths, by year and age group, 1981–2001, United States

Adults/adolescents Children (,13 years old)

Year Cases diagnosed during interval

Deaths occurring during interval

Cases diagnosed during interval

Deaths occurring during interval

Before 1981 92 29 8 1

1981 323 122 16 8

1982 1,170 453 31 13

1983 3,076 1,481 77 30

1984 6,247 3,474 121 52

1985 11,794 6,877 250 119

1986 19,064 12,016 340 167

1987 28,599 16,194 506 294

1988 35,508 20,922 618 322

1989 42,768 27,680 731 374

1990 48,732 31,436 814 400

1991 59,760 36,708 813 398

1992 78,705 41,424 952 425

1993 78,954 45,187 925 546

1994 72,266 50,071 820 586

1995 69,307 50,876 677 538

1996 60,613 37,646 511 428

1997 49,062 21,630 317 216

1998 41,605 18,028 224 120

1999 38,640 16,648 171 114

2000 35,986 14,433 101 66

2001 24,804 8,963 51 35

Total 807,075 462,653 9,074 5,257

Source: HIV InSite Knowledge Base Chapter. Published March 2003. Dennis H. Osmond, PhD, University of California San Francisco. Retrieved from http://hivinsite.ucsf.edu/InSite?page=kb-01-03. Copyright © 2013, Regents of the University of California. Used by permission.

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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

Figure 4.1: Timeline of key events in the history of treating HIV/AIDS

Since the 1980s, there have been several landmarks in the development of identification, treatment, and prevention techniques for HIV/AIDS.

Source: U.S. Food and Drug Administration (2012b). Timeline/History. Retrieved from http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates /HIVandAIDSActivities/ucm117935.htm

4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

In the 30-plus years of the epidemic, the framework for dealing with HIV/AIDS has moved from crisis management to chronic disease management (Fee & Fox, 1992). Using Bronfenbren-ner’s ecological model of human development (see Chapter 1), we can make a few related generalizations:

• At an individual (micro) level, HIV/AIDS has become less an issue of dying in the prime of life. Rather, the focus has turned to managing the attendant health issues associ- ated with being HIV-positive into middle and old age.

• At the meso level of work and school, prominent concerns are less often personal social stigma (although this has not been completely banished) and more often how to accommodate HIV-positive individuals in light of the nondiscrimination require- ments of the Americans with Disabilities Act of 1990 (ADA).

• First report of AIDS • Identification as a retrovirus • Approval of the first immune assay test • Approval of AZT, the first drug to treat AIDS • First drugs for treatment and prevention of certain opportunistic infections • Mechanism for expanded access to promising therapies prior to approval

1981– 1990

• National Task Force on AIDS Drug Development • Expanded access to preapproved HIV therapies • Approval of several new drugs • Accelerated approval of therapies based on surrogate market activity • First non-blood based collection system to test for HIV • Female condom approved, providing women with a barrier product

1991– 1994

• Approval of the first protease inhibitor • First home-used AIDS test kit • First antigen test kit to screen blood donors for HIV-1 • First viral load test

1995– 1999

• New formulations and combinations of medications approved to reduce pill burden • HIV genotyping approved to improve treatment outcomes • First nucleic acid test for plasma screening • First rapid HIV test for use in outreach settings • First fusion inhibitor for treatment of HIV/AIDS • First generic version of an HIV therapeutic agent approved

2000– 2009

• New diagnostic assays • Drug approvals that added more options to treatment regimens • Generic drug approvals that help lower the cost of treatment • Labeling changes to improve management of safety in treating HIV

2010– 2011

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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

• At the macro level of national and international policy, goals are less about imposing quarantines and other emergency public health measures to combat an imminent dis- ease threat. Instead, public policy focuses on the best way to spend private and public funds to manage long-term AIDS treatments and research in light of other budget priorities.

In the United States, HIV/AIDS has been grafted onto the institutional infrastructure of the health care system. Although the system was created to deal primarily with acute episodes of disease (see Chapter 10, “The U.S. Health Care System and Chronic Illness and Disability”), health care has had to deal with the epidemiological transition (see Chapter 2) to chronic disease as the leading cause of morbidity and mortality. This mismatch between how the system was designed and the epidemiological realities is vividly on display in the rising costs of dealing with HIV-positive individ- uals who will have to manage their chronic conditions for decades. Despite the initial perception, HIV/AIDS has proven to be more like cancer than plague.

Web Field Trip For a timeline of key events in the AIDS epidemic, visit CNN’s website (http://www.cnn.com/) and search for “30 Years of AIDS Moments to Remember” by Jacque Wilson and Matt Barringer. Also search for and review the story of Edmund White, a gay man (“HIV in the ‘80s: People didn’t want to kiss you on the cheek” by Elizabeth Landau), and Linda Scruggs, a Black heterosexual woman (“AIDS in the ‘90s: I wasn’t going to die miserably” by Elizabeth Landau).

Critical Thinking Questions

1. How do these individuals’ life stories illustrate the sense of fear and panic associated with an AIDS diagnosis? How do both these individuals draw on spiritual resources in dealing with the experience of disease at the micro level?

2. In what way do these stories illustrate the relevance of the biopsychosocial model of disease?

Micro Perspectives As the stories of White and Scruggs illustrate, the diagnosis of HIV/AIDS produces anxiety and stress at the individual level. Beyond the individual with HIV, family members are also affected, but the “AIDS in the family” story has changed dramatically in 30 years.

Personal Psychological and Physical Effects The initial sufferers who were diagnosed with HIV/AIDS in the 1980s faced imminent, premature death. As a character in a 1985 play about AIDS put it, “Do you think they’ll find a cure before I. . . . How strange that sounds when you say it out loud for the first time” (Kramer & Papp, as cited in Harden, 2012, p. 125). Even though being HIV-positive has since become an ongoing reality, individuals still have to deal with having an incurable condition. They must live with the knowl- edge that it almost inevitably becomes debilitating, and eventually, is likely to precipitate death. Psychologically, the most common symptoms that result from this realization include depression, anxiety, or panic disorder (Falvo, 2009). Furthermore, empirical studies have shown that experi- encing the stigma associated with being HIV-positive adds to the negative psychological effects (Stutterheim et al., 2009). Because of these stressors, many people with HIV/AIDS develop prob- lems with substance abuse or dependence.

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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

As a chronic disease, HIV/AIDS requires ongoing management by the patient, principally a compli- cated, daily drug regimen of ART drugs. This treatment holds the disease in check by preventing viral replication (copying). The choice of drugs is carefully tailored to the patient’s virus type (cer- tain mutations can be resistant to certain drugs) and to his or her lifestyle (e.g., how many pills can fit into the daily routine). More so than with simpler forms of medication, ART drugs come with numerous potential side effects (see Table 4.2) and toxicity issues.

Table 4.2: Select long- and short-term side effects of antiretroviral therapy

Short-term side effects Long-term side effects

Anemia Lipodystrophy (fat redistribution, e.g., losing fat in the face and extremities and gaining it in the abdomen)

Diarrhea Insulin resistance (an early stage of diabetes)

Dry mouth Lipid abnormalities (dyslipidemia, e.g., increases in cholesterol and triglycerides)

Fatigue Decrease in bone density

Headaches Lactic acidosis (buildup of the waste product lactate, which can lead to more serious problems such as liver failure)

Nausea and vomiting

Pain and nerve problems (neuropathy)

Rash

Weight loss

Sources: HHS. (2009b). Overview of HIV Treatments. HIV/AIDS Basics: Just diagnosed with HIV/AIDS: Treatment Options. Retrieved from http://aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/treatment-options/overview-of-hiv-treatments/; U.S. Department of Veterans Affairs. (2012). Side effects guide. Retrieved from http://www.hiv.va.gov/patient/side-effects-guide/index.asp.

Familial and Social Relationships When AIDS first appeared, it was principally a disease of gay men and injection drug users. Because of negative attitudes toward homosexuality and drug use, these individuals might already have been estranged from their family of origin, even prior to their diagnosis. Then, before the ability to test the blood supply became possible in 1985, some people with hemophilia contracted AIDS through blood transfusions. As a result, hemophiliacs were seen as the innocent victims of AIDS, whereas homosexuals and injection drug users were seen as personally responsible for contract- ing the disease by choosing to engage in high-risk behaviors. For example, many of the original men who contracted HIV/AIDS in New York City in the 1980s had multiple sexual partners during a 6-month period, which partly explains the initial rapid spread of the epidemic (CDC, 1981b). For many, those in the former (“victim”) category were seen as objects of sympathy; in contrast, those in the latter (“responsible”) category became the objects of stigma and discrimination by their family members and society at large. This view was reinforced by the media at the time: Gay men with HIV were often shown alone, but hemophiliacs with HIV were often portrayed in a home setting surrounded by other family members (Cook & Colby, 1992; see the discussion of stigma in the Sociocultural and Policy Issues section in this chapter).

Now that HIV/AIDS has moved into the heterosexual population, it can disrupt marriages between men and women—especially when one partner knowingly infects the other without telling him or

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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

her. In some instances, criminal penalties can be involved. View the video of Renee in the “Faces of HIV” website (http://www.wemakethechange.com/faces/), in which a woman describes how she managed to get her former husband to confess that he knowingly infected her. As a result, he was convicted of a felony in the state of Florida.

Meso Perspectives At the meso level of institutional life, documented evidence shows discrimination against AIDS patients during the early years of the epidemic. Discrimination involved practices such as denying HIV-positive children access to school, refusing to rent or sell property to an infected individual, and refusing to provide personal services (Gostin, 1992). Although children who contracted AIDS through a blood transfusion may not have been personally responsible, fear of interacting with these individuals was widespread during the early years of the AIDS epidemic. One particularly famous example, from 1985, involved the Indiana teenager Ryan White, who was denied the right to attend public school. In 1986, three hemophiliac brothers were similarly banned from attend- ing a public school in Florida; when courts ruled that they should be permitted to attend classes, their home was burned down (Harden, 2012). In the same year, the U.S. Department of Justice issued a decision declaring that it was permissible (on public health grounds) for employers to bar HIV-positive individuals from work (Brandt, 1988). It has long been recognized that the state has the power to restrict individual liberty to prevent the spread of infectious disease (e.g., through quarantine). However, these harsh actions also illustrate the widespread social stigma associated with AIDS in the years before life-sustaining therapies were developed (Brandt, 1988).

Antidiscrimination Measures By the late 1980s, however, discriminatory practices had been formally condemned by myriad official government reports (Gostin, 1992). Also, after the passage of the ADA in 1990, a consen- sus soon emerged among legal experts that HIV/AIDS should qualify as a covered disability. Then, in 1996, Congress passed the Health Insurance Portability and Accountability Act (HIPAA), which ensured greater privacy for an individual’s medical records. Consequently, individuals were no longer required to reveal to their employers their HIV status. In 1998, the U.S. Supreme Court ruled that, under the ADA, the plaintiff (Sidney Abbott) could not be denied dental care simply because she was an asymptom- atic HIV-positive individual (Brag- don v. Abbott, 1998) And in 2008, the ADA was amended to make it easier for HIV/AIDS patients to claim coverage under the act. In

J. Scott Applewhite /Associated Press

President Clinton signed the Health Insurance Portability and Accountability Act into law in 1996.

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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to Better Understand HIV/AIDS

short, although individual instances of personal prejudice still affect HIV-positive individuals, a body of legal precedents has held that individuals cannot be discriminated against in work environments or in the provision of services based on their HIV status. To examine the court’s reasoning, see the full text of Bragdon v. Abbott, found at Cornell’s Legal Information Institute website: http://www .law.cornell.edu/supct/html/97-156.ZO.html.

Privacy The decision of whether to reveal one’s HIV-positive status at work remains a consideration that each person must deal with individually. As another part of the psychosocial management of hav- ing a chronic condition, a person must weigh the potential psychological benefits (coworker sup- port) versus the costs (potential prejudice). Generally, it is advised to think carefully about this decision before proceeding with disclosure and to carefully consider to whom this information will be revealed. Many employers provide Employee Assistance Programs (EAPs) to help workers discuss sensitive issues in a confidential environment (HHS, 2009a).

Health Care Coverage As noted earlier, HIV/AIDS was transformed into a chronic condition mainly by the development of antiretroviral drugs, which must be taken daily. So, in addition to biological side effects and potential psychological stigma, patients with HIV must face the cost of their treatment, which can become very expensive. At present, the suggested wholesale price of only a few of the antiretrovi- ral drugs is less than $500 per month, and some cost well over thousands of dollars (HHS, 2013c). However, through the efforts of various nonprofit organizations (e.g., the Clinton Health Access Initiative and the Bill and Melinda Gates Foundation), these drugs are being made available in the world’s poorest countries, where HIV/AIDS is highly prevalent, at a fraction of the wholesale price (McNeil, 2011).

In general, most HIV-positive individuals rely on some external source (either government or private) to cover their drug and other medical bills:

• Medicaid (the joint federal and state program designed to cover the medical bills of low-income people);

• Medicare (the federal program to cover the medical bills of seniors and those with disabilities);

• The Ryan White HIV/AIDS Program (a federal program that provides funds specifically targeted to HIV-positive patients with insufficient resources to cover their medical expenses);

• Private insurance (patients might be denied coverage because being HIV-positive is considered a preexisting condition); and

• Private charities and grant-making organizations (e.g., the Clinton Foundation).

In other words, as for all U.S. residents, HIV patients have to cobble together health insurance coverage because the U.S. health care delivery system is fragmented.

In the next several years (starting in 2014), the Patient Protection and Affordable Care Act of 2010 (ACA), also known as “Obamacare,” is planned to be fully implemented (for more detailed discussion, see Chapter 10). Already, in certain states, people in high-risk pools are being insured despite their costly-to-treat medical conditions. The ACA’s goal is to give many Americans (includ- ing HIV-positive ones) access to affordable health insurance by expanding Medicaid and requiring

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private insurers to offer coverage regardless of preexisting conditions. Although such policies will lead to an increase in the number of covered individuals, the exact percentage of Americans who will eventually be covered is uncertain, because the U.S. Supreme Court has held that states are not required to expand their Medicaid programs. Also, large corporate employers will not be required to cover their employees until at least 2015; in other words, much about the law is still in flux. These uncertainties aside, the fact that HIV patients stand to benefit from this health reform initiative underscores how HIV/AIDS has become part of the broader structure of the U.S. health care system. This brings us to the macro perspectives on this topic.

Macro Perspectives As we saw from the discussion of the ADA and other legal developments, in the second decade of the 21st century, HIV/AIDS became an integral part of national health care policy. In July 2010, the White House issued “The National HIV/AIDS Strategy for the United States,” which was designed to be a “coordinated national response to the HIV epidemic”:

The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sex- ual orientation, gender identity or socio-economic circumstance, will have unfet- tered access to high quality, life-extending care, free from stigma and discrimina- tion. (Office of National AIDS Policy, 2010)

The strategy has three broad policy goals, as well as one implementation goal:

• Reducing new HIV infections, • Increasing access to care and improving health outcomes for people living with HIV, • Reducing HIV-related health disparities, and • Achieving a more coordinated national response to the HIV epidemic in the United

States (Office of National AIDS Policy, 2010).

By setting such broad, integrative goals, this strategy draws on all features of the U.S. health care system to manage HIV/AIDS. It defines HIV/AIDS as a problem to be dealt with by the whole com- munity using multiple approaches, ranging from educating individuals on how to minimize risky behaviors to funding biomedical research on vaccines and microbicides. Also, it emphasizes that “to successfully address HIV, we need more and better community-level approaches that integrate HIV prevention and care with more comprehensive responses to social service needs” (Office of National AIDS Policy, 2010, p. ix). In other words, although characterized as a national strategy, the report emphasizes that successful HIV/AIDS prevention and treatment will rely on a combination of micro-, meso-, and macro-level approaches.

Another aspect of U.S. government policy has been to fund HIV/AIDS prevention and treatment in other countries, especially Africa, where the majority of cases now occur. Created by Presi- dent George W. Bush in 2003, the President’s Emergency Plan for AIDS Relief (PEPFAR) had strong bipartisan congressional support. During its early years, PEPFAR focused on emergency health needs, such as setting up supply chains and preventing mother-to-child transmission, by partner- ing with both governmental and nongovernmental entities. Now, as PEPFAR is starting its second

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decade, it is moving toward creating an “AIDS-free generation” (U.S. Department of State, 2012, p.4). In 2012, a U.S. Department of State report about PEPFAR noted that its goal is “a shared responsibility, requiring the commitment and leadership of partner countries and reinforced with support from donor nations, civil society, people living with HIV, faith-based organizations, the private sector, foundations and multilateral institutions” (U.S. Department of State, 2012, p. 4). Although international in focus, PEPFAR’s ultimate goal is “country ownership,” that is, “the end state in which partner countries lead, manage, coordinate and over time increasingly finance the efforts needed to achieve an AIDS-free generation” (U.S. Department of State, 2012, p. 4-5).

Although the virus that causes AIDS is the same throughout the world, poorer countries do not have nearly as many resources as the United States to deal with this disease. To counteract this imbalance, the United States has contributed (through PEPFAR) more than any other nation to combat AIDS internationally (U.S. Department of State, 2012). Because these countries do not have adequate health care infrastructures (e.g., enough health care providers for the size of the population, effective drug delivery system), HIV/AIDS has remained an acute, life-threatening dis- ease in much of the developing world. But, thankfully, progress is being made: In 2011, more than 8 million men, women, and children (primarily in Africa) were receiving treatment for HIV/AIDS, whereas in 2010, only 6.6 million were receiving treatment (U.S. Department of State, 2012). This comparison between the United States and the developing world vividly illustrates the sociologi- cal dimensions of illness: The same disease (from a biological standpoint) can have radically differ- ent outcomes depending on the social setting in which it is introduced.

The change from acute infectious to chronic disease paradigm can be seen even in the research aspects of HIV/AIDS at the national level (e.g., the design of clinical trials). A clinical trial is an experiment performed on a group of individuals all suffering from the same medical condition. At the outset, they are randomly assigned either to a group that receives an experimental therapy or to a control group; after the clinical trial, the results are compared to determine whether the difference in outcomes is statistically significant (i.e., highly unlikely to have occurred by random chance). Historically, in clinical trials designed to test drugs for treating infectious diseases, the individuals assigned to the control group usually receive a placebo (i.e., a therapy or drug with no active ingredients). This model of a placebo-based control was used to test the efficacy of AZT, the first successful AIDS drug in the mid-1980s.

However, in clinical trials to test the efficacy of cancer treatments, many researchers believe that withholding a potentially useful therapy is unethical, because cancer is a potentially fatal con- dition. Consequently, comparative studies of therapy efficacy are often designed using histori- cal controls (i.e., data from earlier studies rather than current patients from whom treatment is actively withheld). The question of methodology for the AZT clinical trial formed the basis for congressional hearings on AIDS drug development held in July 1986 (Edgar & Rothman, 1991). As a congressional hearing, the occasion served more as an opportunity for each side to articulate its views. However, it did publicly raise the macro-level issue of the appropriate level of risk and uncertainty when formulating biomedical research policy. That is, are we willing to accept a higher degree of uncertainty to facilitate more timely action? In May 1987, the Food and Drug Adminis- tration (FDA) answered this question administratively by issuing a new set of rules that permitted the sale of new drugs for serious or life-threatening diseases while the drugs are still undergoing clinical trials (Edgar & Rothman, 1991).

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CHAPTER 4Section 4.3 HIV/AIDS Through the Life Span

4.3 HIV/AIDS Through the Life Span

When HIV/AIDS first appeared, its initial victims were individuals in the prime of life—one aspect that made this disease so shocking at a social and cultural level. Over time, however, new cases emerged among individuals at different stages of the life cycle. Before the precise method of transmission was known, instances of mother-to-child transmission occurred. As knowledge of the disease grew, treatment became available to prolong life, leading to the emergence of older patients (e.g., 50 years old and older) who were HIV positive. Now, cases can be found at all stages in the life cycle. When we analyze the factors that put individuals at risk for HIV/AIDS at various ages, it becomes clear once again that sociological and economic factors are as important as biological considerations.

HIV-Positive Infants and Children As noted, one of the major HIV/AIDS success stories has been the comparatively small number of new cases of annual perinatal infection. In 2006, the number of perinatal HIV infections was estimated at between 144 and 236 new cases (Branson et al., 2006). By contrast, the number of new adult cases annually in the United States is 50,000. For more statistics, consult the National Institute of Allergy and Infectious Diseases (NIAID, part of the National Institutes of Health [NIH]) webpage on HIV/AIDS: http://www.niaid.nih.gov/topics/hivaids/Pages/Default.aspx. Most new cases of childhood HIV infection occur in the inner cities, where issues of poverty, illicit drug use, and lack of adequate health care are serious problems. So it is not surprising that these new cases result primarily from inadequate health care: substandard prenatal care, failure to test for HIV sta- tus, and lack of appropriate public health measures to treat underlying health issues and promote drug prevention programs.

HIV infection can be detected in the newborn by 3 months of age using various blood tests. Infants who test positive follow two general patterns. Approximately 20% develop a serious disease within the first year of life and die by age 4; the remaining 80% show wide variation in the rate of disease progression. Overall, these children tend to develop motor and cognitive skills (e.g., crawling, walking, talking) more slowly than their non-HIV-positive counterparts. HIV-positive children are also susceptible to opportunistic infections, such as PCP and lymphocytic interstitial pneumonitis (LIP), which do not occur in the same way or are rare in adults (NIAID, 2008). Tragically, some adolescents who became HIV-positive through perinatal transmission have reached an age where they can engage in sexual intercourse, which puts their partners at risk for HIV infection (Tassi- opoulos et al., 2013).

Prime of Life: The Latency Stage After the initial flulike symptoms have subsided, HIV-positive individuals may have no outward signs of illness. This asymptomatic phase can last as long as 12 years or more (see the NIAID webpage on HIV/AIDS symptoms: http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Pages/symptoms .aspx). However, although asymptomatic, they can transmit the virus through sexual intercourse or sharing needles among drug users. It is this intermediate stage that has been prolonged through the introduction of ART. Even so, eventually the virus will start to replicate and CD4 cells will begin to decline, which will weaken the immune system, producing AIDS.

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Childbearing While HIV-Positive Among HIV-positive women of childbearing age, the possibility of perinatal or mother-to-child transmission (MTCT) of the virus exists. Now that safeguards have been established to protect the blood supply (see AIDS and the Blood Supply later in this chapter), MTCT is the principal means by which children become infected. As the CDC has reported, 162 of 217 children diagnosed in 2010 (75%) acquired HIV through perinatal infection (CDC, 2013e). In terms of ethnicity, the same prevalence patterns hold as for other forms of infection: The majority are Blacks (63% in 2009), followed by Hispanics/Latinos (22% in 2009), and lastly by Whites (13% in 2009). The good news, however, is that the incidence of perinatally acquired infection has been declining across all three ethnic groups. Among Blacks, it has fallen from 15.2 to 9.9 per 100,000 live births in the period 2007–2009; among Hispanics/Latinos in the same time period it has fallen from 2.1 to 1.7 per 100,000 live births; and among Whites, it has fallen from 0.8 to 0.1 per 100,000 live births. Overall, there has been more than a 90% decline in the number of children perinatally infected since the introduction of screening tests and ART in the mid-1990s. If appropriate treatment and preventive steps are taking prenatally, the chance of perinatal infection drops to less than 1% (CDC, 2013a).

These impressive reductions have underscored the benefits of universal HIV screening as a preven- tion strategy. The CDC recommends that all pregnant women, as a routine part of prenatal care, be tested for HIV (Branson et al., 2006). In 1999, the Institute of Medicine (IOM) recommended the following measures for streamlining the HIV-testing process to make it more common:

• Informing all pregnant women that an HIV test would be performed and that they had the option to decline it on an individual basis (opt-out screening),

• Eliminating requirements for extensive pretest counseling, and • Not requiring explicit written consent. (IOM, 1999)

Evidence shows that by making the test for HIV routine, less stigma will be associated with the procedure. As a result, more pregnant women will undergo testing (Branson et al., 2006). A recent survey of the literature reached similar conclusions: Universal screening is both accurate and more effective than targeted screening at identifying new cases of HIV among pregnant women (Chou et al., 2012).

A recent systematic review of the literature from clinical trials and observational studies recon- firmed the benefits of ART for both mother and child. Specifically, ART was found to suppress viral replication in the mother (inhibiting the transition from HIV to AIDS), decrease infant mortality, and reduce MTCT (Sturt, Dokubo, & Sint, 2010).

During pregnancy and postpartum, HIV can be transmitted from mother to child in three ways: in utero, during delivery, and from breast-feeding. In utero, the chance of transmission can be signifi- cantly reduced if the mother is taking an ART regime; during birth, the baby should be delivered by cesarean section if the mother has a viral load greater than 1,000 copies/mL (CDC, 2013a). After birth, the mother should receive counseling not to breast-feed her child or prechew the child’s food. When these interventions are combined, the risk of MTCT falls to 1% –2% (Sturt et al., 2010). These results indicate that if a woman receives appropriate prenatal care, being HIV-positive does not keep her from going on with her life. Even so, the increasing complexity that HIV-positive sta- tus brings to pregnancy starkly illustrates the difficulties of dealing with major personal life events while managing a life-threatening, chronic illness.

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But what if the woman’s partner is HIV-positive? It is still possible for the couple to conceive a child without passing the virus on to the infant. Sperm washing or bleaching is a procedure that effectively removes the infected semen from the sperm. The sperm are then bathed in a synthetic seminal fluid, allowing an HIV-positive man to have biological children without fear of infecting his partner or child with the virus. This process is yet another example of how medical procedures have helped transform HIV/AIDS into a chronic disease rather than an acute health crisis.

HIV Leads to AIDS Given the number of organs that can be affected as a result of AIDS, this disease is clearly a major contributor to both illness and disability. With the onset of AIDS, according to NIAID (2009), the following symptoms are common:

• Rapid weight loss • Recurring fever or profuse night sweats • Extreme and unexpected tiredness • Prolonged swelling of the lymph glands in the armpits, groin, or neck • Diarrhea that lasts for more than a week • Sores of the mouth, anus, or genitals • Pneumonia • Red, brown, pink, or purplish blotches on or under the skin or inside the mouth, nose,

or eyelids • Memory loss, depression, and other neurologic disorders

With the immune system significantly weakened, resulting complications—neurological, pulmo- nary, cardiac, gastrointestinal, and kidney—become the proximate cause of death. Opportunistic infections include cytomegalovirus and various types of pneumonia.

Neurological Complications One of the leading neurological complications (developed by 20% to 30% of patients) is AIDS dementia complex. In this syndrome are found such symptoms as decline in cognitive abilities, lack of concentration, and memory loss. Also, because HIV enters the central nervous system early in the course of infection, patients are at risk for developing neurological conditions such as encephalitis (inflammation of the brain) or meningitis (inflammation of the membrane surround- ing the brain or spinal cord). Additional neurological problems include headache, seizures, and ataxia (impairment in muscle coordination; Falvo, 2009).

Pulmonary Complications Pulmonary complications comprise the major opportunistic infections associated with AIDS. As a matter of fact, tuberculosis (TB) is the leading cause of death among people with HIV infection (CDC, 2013f). Although caused by a bacterium rather than a virus, TB can exist in the body while an individual is asymptomatic (latent TB infection). However, individuals who are HIV-positive and have latent TB infection are much more likely to progress to active TB disease than those without HIV. Consequently, the CDC recommends opt-out testing for HIV in TB clinics. Likewise, to mini- mize complications and infection of others, all people diagnosed with HIV should be tested for

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TB immediately, and those at risk of TB exposure should be tested annually. The CDC has issued extensive guidelines on the treatment of opportunistic infections associated with HIV (Kaplan et al., 2009). See http://www.cdc.gov/hiv/resources/factsheets/hivtb.htm for an overview of TB and HIV coinfection. Go to http://www.cdc.gov/tb/topic/TBHIVcoinfection/tbhiv_video.htm for a short video explanation.

Cardiac Complications According to the American Heart Association (AHA), being HIV-positive puts an individual at higher risk for cardiovascular disease than other individuals. Although it is hard to determine precisely which factors contribute to this higher risk (e.g., long-term exposure to the HIV virus or to ART), people with HIV more frequently exhibit some of the following risk factors for heart disease: high triglycerides, not enough “good” cholesterol, chronic inflammation of the arteries and veins, ath- erosclerosis, a greater tendency to smoke cigarettes, and diabetes (although the data are conflict- ing on diabetes risk; AHA, 2012b). Although everyone should be monitored for these risk factors as part of normal patient care, HIV-positive individuals should be monitored more closely because of their heightened risk.

Cardiac complications associated with AIDS include pericarditis (inflammation of the outer lining of the heart), myocarditis (inflammation of the heart muscle), and endocarditis (inflammation of the inner lining of the heart). In addition to the disease itself, the use of antiretroviral drugs mod- estly increases an individual’s risk of having a heart attack (Falvo, 2009).

Gastrointestinal Complications AIDS patients can suffer from numerous gastrointestinal complications. Specifically, they can suf- fer from a painful yeast infection of the oral cavity (candidiasis), which may be one of the first visible indications (if a test for HIV has not been given) that a person has AIDS. With advanced HIV, an individual can develop inflammation of the esophagus, which makes swallowing difficult. Individuals can also develop hepatitis infection (which may lead to cancer of the liver and death) primarily through coinfection; about 80% of HIV individuals who inject drugs also have the hep- atitis C virus (CDC, 2013g). At the end of life, various gastrointestinal infections can make eating difficult, contributing to weight loss (Falvo, 2009) and overall wasting (cachexia).

Kidney Complications AIDS patients can suffer from kidney problems with varying degrees of severity, from kidney stones to acute renal failure. These conditions can derive from the HIV directly affecting the kidney, an opportunistic infection affecting the kidney, or the HIV medications harming the kidney as a side effect (Falvo, 2009). Specifically, the virus can damage the tubules, parts of the kidneys that filter body fluids and enable the discharge of waste. About 30% of people with HIV have protein in the urine, which indicates reabsorption problems with the kidneys (AHA, 2012).

HIV Among the Elderly: Dying of AIDS or Old Age? HIV infection has been growing among the older population. In 2000, patients older than age 50 accounted for approximately 15% of all AIDS cases in the United States (Grabar, Weiss, & Costa- gliola, 2006). In 2015, patients aged 50 years and older are expected to account for more than

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CHAPTER 4Section 4.4 Treatment Approaches

50% of all cases in the United States (Kirk & Goetz, 2009). This change in epidemiology derives from two main factors: the increasing longevity of HIV-positive individuals, and the increasing per- centage of new cases of HIV disease among those who are already more than 50 years old (about 10%). For those more than 50 years old who contract the disease, the main risk factor is hetero- sexual intercourse (Grabar et al., 2006). Demographically, the same patterns apply as for younger populations: The highest percentage of cases is found among Blacks, followed by Latinos. Because these groups often have less access to adequate health care, they have shorter life expectancies than Whites of similar age and HIV status (Colfax, 2012).

For myriad reasons, the prognosis for HIV patients aged 50 years and older is not as good as those in younger age cohorts. Clinically, studies indicate that older patients respond more poorly to ART than do younger patients. Also, their CD4 cells do not recover as much after initiating therapy as they do for younger patients (Althoff et al., 2010). Also, because these patients may suffer from other chronic conditions associated with advancing age, these may complicate the treatment for HIV disease (e.g., dealing with drug interactions for multiple diseases). For both social and clinical reasons, AIDS can be initially misdiagnosed among older patients. Many clinicians do not perceive HIV/AIDS as a disease of the aged and thus do not recommend that their older patients be tested for it. In the clinic, many signs and symptoms of AIDS mimic other medical conditions associated with aging. Consequently, many older patients do not begin to receive AIDS-specific treatment until their disease has progressed (Blanco et al., 2010).

Evidence shows that HIV-positive individuals are at greater risk of age-related illness, specifically dementia, depression, insulin resistance, high lipids (e.g., cholesterol, triglycerides), and infec- tions (HHS, 2010a). Also, being HIV-positive can induce premature aging by putting individuals at risk for contracting typical age-related illnesses at earlier ages, such as cardiovascular, bone, kidney, liver, and lung diseases, as well as many cancers (Fauci, Hodes, & Whitescarver, 2010). In contemporary biomedical research, these comorbidities associated with aging are now the subject of ongoing clinical studies. Many studies are looking for treatments to reduce chronic inflammation and chronic immune activation, which appear to be associated with the process of accelerated aging (Aberg, 2012). To view a panel discussion on the field of HIV and aging, go to http://www.thebodypro.com/content/71358/croi-2013-research-on-aging-and-hiv-video.html

4.4 Treatment Approaches

Although they can prolong life, ART regimens are complex. They require that patients take a daily “cocktail” of three different antiretroviral drugs from two of the five different classes of HIV drugs. Each class of drug interferes with viral replication in a unique way. This multidrug regimen not only maximizes the effort at controlling the virus but also guards against drug resistance. Because HIV can mutate, there is less likelihood of drug resistance if a multipronged approach is used. As in any major treatment decision, the physician and the patient should first discuss the risks and benefits of the procedure. In the case of ART, such a discussion is necessary not only to initiate treatment but also to ensure that patients understand they will have to take some combination of these drugs for the rest of their lives. This scenario illustrates how social management is necessary (on the part of the patient as well as the physician) in deal- ing with HIV/AIDS.

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CHAPTER 4Section 4.4 Treatment Approaches

ART Drug Classes The five classes of drugs are as follows:

• Nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs), • Nonnucleoside reverse transcriptase inhibitors (NNRTIs), • Protease inhibitors (PIs), • Entry/fusion inhibitors, and • Integrase inhibitors.

Each drug class has its own mechanism of action. NRTIs block the ability of HIV to replicate by altering the virus’s genetic material so that a crucial enzyme (reverse transcriptase) cannot func- tion properly. NNRTIs also block the functioning of the enzyme; however, they target the enzyme itself rather than the genetic material. PIs block the ability of HIV to cut the long strands of genetic material that it makes (protease) into smaller strands, a necessary step in order for the virus to replicate (make copies). Entry/fusion inhibitors prevent the virus from invading the CD4 cells by acting on the receptor sites on cells where the virus “docks.” Finally, integrase inhibitors acts on the enzyme integrase, which the virus needs to add its DNA to that of CD4 cells (HHS, 2009b).

Initial therapy usually consists of two NRTIs and a third agent selected from among NNRTIs, pro- tease inhibitors, integrase inhibitors, or (rarely) an entry/fusion inhibitor that blocks the chemo- kine receptor 5 (Thompson et al., 2012). Within the AIDS research community, recent consensus holds that HIV drug resistance testing should be done at the outset of care. The recommended procedure is genotypic testing to ensure that the combination of drugs is tailored to the specific patients (HHS, 2013a). Over time, the ART regimen may have to be modified because of drug resis- tance brought on by evolutionary mutations in the virus (Goldberg, Siliciano, & Jacobs, 2012). This aspect of treatment illustrates, once again, how HIV/AIDS has become a chronic condition that much be managed through continual updates over the patient’s life span.

Fortunately, single-pill dosing of some ART regimens has been developed, which promises to help with patient compliance. Two three-drug combinations have been approved so far: Atripla, in 2006, and Complera, in 2011. A four-drug pill (Gilead Sciences, Inc.’s Stribil, formerly known as “Quad”) received approval in May 2013 for newly diagnosed patients. One drawback of the new medicines is their premium price (the cost of Stribil is estimated to be roughly $29,000 per year), and of course, HIV patients must stay on ART for life (U.S. Department of Health and Human Ser- vices, 2012a).

Timing Treatment When to begin treatment has been a matter of debate among scientists. The issue turns on the tradeoff between the potential toxicities from long-term exposure vis-à-vis the potential thera- peutic benefits from earlier treatment. One comparative analysis from multiple cohort studies indicated that when a patient’s CD4 cell count falls to 350 cells/mm3, this “should be the minimum threshold for initiation of antiretroviral therapy” (When to Start Consortium et al., 2009, p. 1361). However, recent findings suggest that all patients who receive earlier treatment might benefit in

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the long run. As the most recent recommendations from the International Antiviral Society–USA panel has observed, “Evidence from clinical trials, observational cohorts, and pathogenic studies all point toward the health benefits of earlier ART. Potent and tolerable treatment regimens now make durable viral suppression possible for most persons throughout the course of HIV infection” (Thompson et al., 2012, p. 398). Here are the panel’s specific recommendations:

1. Regardless of CD4 cell count, ART should be offered to all patients; 2. Regardless of symptoms, ART should be offered during the acute phase of primary HIV

infection; 3. For patients with opportunistic infections, ART should be initiated (preferably) within 2

weeks of diagnosis; 4. Patients should be monitored every 3 months after the initiation of therapy to deter-

mine whether a change in the combination of drug therapies is warranted; 5. Once viral load has been suppressed for 1 year (with a stable CD4 cell count), monitoring

can be extended to intervals of 6 months for patients who adhere to the therapeutic regime; and

6. Genotype testing for resistance should be performed on all newly diagnosed cases and in cases of confirmed virologic failure. (Thompson et al., 2012, p. 389, Box 1, p. 395, Box 3)

In addition to AIDS-specific drug therapy, successful treatment ideally requires that patients eat a well-balanced diet, take multivitamins, exercise, and avoid smoking and excessive alcohol use. Also, because HIV/AIDS is transmitted primarily through sexual contact, it is imperative for HIV-positive patients to talk openly about sexual issues with both their health care provider and their intimate partners. If someone knows of his or her partner’s HIV-positive status and consents to continued intimate relations, then it is possible to maintain an active sex life in the context of a monogamous relationship. However, even in these circumstances, certain safety practices should be strictly followed, especially the consistent and correct use of a condom. But if an HIV patient has multiple sexual partners, then that person should be tested for sexually transmitted diseases every 3 to 6 months. The point is not to engage in activities that heighten the risk of contracting other diseases (sexually transmitted or otherwise), because these comorbidities will complicate treatment, given the HIV-positive status.

Treatment as Prevention Another key area of research is ART as prevention, or in scientific parlance, preexposure prophy- laxis. The FDA has approved a daily dose of the drug tenofovir disoproxil fumarate plus emtricit- abine (commonly known as TDF/FTC) for sexually active individuals at risk for HIV infection (e.g., having multiple sexual partners). Clinical trials supported by the CDC, NIH, and the University of Washington have found that a daily regimen of these drugs provides additional protection against HIV infection (CDC, 2013k). However, these more pharmacological approaches to prevention must not be construed as being in lieu of more behaviorally oriented strategies (e.g., having only one sexual partner). This example illustrates, once again, how the prevention of HIV must rely on the biopsychosocial approach of combining biological and sociological knowledge.

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CHAPTER 4Section 4.5 Sociocultural and Policy Issues

4.5 Sociocultural and Policy Issues

Because of advances in available drug therapies, HIV/AIDS has become a thoroughly man-ageable chronic disease, at least from a therapeutic standpoint; however, the whole pic-ture reveals that numerous obstacles persist, including psychosocial concerns previously addressed (e.g., stigma and discrimination) as well as the universal availability of ART, which can be highly expensive. Also, HIV/AIDS illustrates the nexus between socioeconomic status (SES) and disease. SES is a measure of a person’s social standing based on a combination of education, income, and occupation; those with more education, higher income, and white-collar jobs are higher in SES than those with less education, less income, and blue-collar or manual labor jobs. Those with lower SES tend to engage in riskier behaviors, which increase their chances of becom- ing HIV-positive; conversely, those who are HIV-positive often face unemployment, which may move them to a lower level of SES (American Psychological Association, 2013). In other words, the arrows of influence between SES and disease point both ways.

Stigma and Discrimination Social stigma and discrimination—the constant shadows of the HIV/AIDS epidemic—have been repeatedly cited as reasons that screening, prevention, and treatment efforts have been underuti- lized by high-risk groups (e.g., men who have sex with men, commercial sex workers) and those who are already HIV-positive. As described by Goffman, stigma can be defined as “an attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one” (1963, as cited in Mahajan et al., 2008, p. S70). Stigmatization is thus intimately linked to notions of social deviance, which is defined by each society differently. That is, society tends to stigmatize those who are viewed as differing from the “norm.” Based on this interpretation, stigmatization may lead to harmful discrimination (the word also means the act of differentiating or distinguishing). Whereas stigmatization refers to a perception of an individual in negative terms because of difference, discrimination involves a prejudicial outlook that often leads to overt acts of unfair or unjust treatment (e.g., denial of education, housing, or employ- ment) based on a skewed view of a person. Consequently, to be the object of harmful discrimina- tion, a person must also be in a subordinate position within society at large, relatively lacking in power. This process has been characterized by Link and Phelan as fourfold:

1. Individuals distinguish and label human differences; 2. Dominant cultural beliefs link labeled persons to undesirable characteristics; 3. Labeled persons are placed in distinct categories to accomplish some degree of separa-

tion of “us” from “them”; and 4. Labeled persons experience status loss and discrimination that lead to unequal outcomes.

(as cited in Mahajan et al., 2008, p. S71)

According to Mahajan et al. (2008), this framework helps us to define stigma and to assess future policy interventions regarding HIV/AIDS. They observed that such a framework is needed because “there is . . . little consensus among policy-makers and programme implementers about how best to define, measure and diminish the phenomenon [of stigma]” (Mahajan, 2008, p. S75). Also, they noted that by focusing on sociological and structural factors that contribute to prejudicial label- ing, informed policymakers might reduce stigma in the future. They recommended using reliable

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CHAPTER 4Section 4.5 Sociocultural and Policy Issues

stigma measures (standard, uniform measurement criteria) when evaluating programs to deal with HIV/AIDS. At a procedural level, Mahajan et al. recommended creating a social and legal framework to promote HIV testing, implement “stigma reduction interventions among healthcare providers” (p. S76), and link provision of ART with community stigma-reduction interventions. In other words, they would treat the biological and psychosocial (psychological and social) aspects of the disease simultaneously.

Stigma and discrimination are especially cast into bold relief when news and fictionalized accounts of AIDS from the 1980s are examined. As Cook and Colby (1992) have observed, early television news stories visually contrasted gay men with hemophiliacs:

The gay men interviewed . . . were shown alone, either in public places such as parks and cafes or in doctors’ offices. In contrast, the hemophiliacs appeared at home surrounded by family members. The reports stressed the fact that hemo- philiacs could not adjust their behavior to avoid exposure. (p. 98)

In addition to saying that one group was responsible for contracting AIDS but the other one was not, the juxtaposition implicitly highlighted the heterosexual lifestyle of the hemophiliacs by portraying them within typical family settings. Similar themes were presented in the 1985 made-for-television movie An Early Frost. In the movie, a gay man (a White middle-class lawyer) returns home to his family of origin to die of AIDS, where he is eventually reconciled with all his family members—including his father, who had been repulsed by his son’s homosexuality. As one critic has observed, the movie implicitly argues that “the faux household of a gay couple is revealed to be a fragile shelter that must give way to the enduring arms of mother, father, sister, and grandma” (Goldstein, 1992, p. 29) Although this film was a pioneering, sympathetic portrayal of an AIDS patient, it also subtly evoked the social stigma surrounding people with AIDS when it emerged in the 1980s.

From then until the second decade of the 21st century, both the epidemiology of AIDS and Ameri- can attitudes toward homosexuality have changed. (For a view on AIDS and the changing attitudes toward the family, see Levine, 1992.) Epidemiologically, although men who have sex with men still account for most new cases of AIDS (63% in 2010), heterosexuals account for 25% of new cases, and most cases of infection among women derive from heterosexual contact or injection drug use (CDC, 2013h). Also, the disease is more prevalent among Blacks than any other ethnicity, and Hispanics/Latinos are disproportionately affected. Potentially, the fact that the disease is no longer limited exclusively to one group (or sexual orientation) has diluted some of the negative perceptions associated with HIV in the past.

Web Field Trip View a video of Tracey (an HIV-positive married heterosexual woman) and other “Faces of HIV,” along with their personal journal entries, at http://www.wemakethechange.com/faces/

Critical Thinking Questions

1. How do these personal accounts support or contradict the early views of HIV/AIDS? 2. How do they show ways in which the epidemic has changed over the decades?

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CHAPTER 4Section 4.5 Sociocultural and Policy Issues

Celebrity Cases Political activism among AIDS patients started early in the epidemic (the AIDS Coalition to Unleash Power, known as ACT UP, is a well-known example). However, it was the emergence of celebrities with AIDS that moved discussion of the disease into the public spotlight. The revela- tion in 1985 that actor Rock Hudson had AIDS served as a catalyst. As an actor who embodied heterosexual masculinity on-screen, the implication that he was actually gay demonstrated that both homosexuality and the risk of AIDS might be more widespread than had been believed.

This bit of news galvanized public interest, and pol- iticians took notice. As Harden has noted, it was only a few weeks before Hudson died from the disease, in the fall of 1985, that President Ronald Reagan mentioned AIDS publicly for the first time. Hudson’s death was one factor that led Congress to appropriate more money for AIDS research under the umbrella of NIAID, which was created in 1987 (Harden, 2012).

Prominent sports celebrities later publicly acknowl- edged their HIV-positive status, including Olympic athlete Greg Louganis, tennis star Arthur Ashe, and basketball great Earvin “Magic” Johnson. Johnson’s 1991 revelation of his HIV-positive status was another noteworthy cultural bellwether, because he had contracted the virus through numerous het- erosexual encounters. His story illustrated that the disease was no longer confined to homosexuals and injection drug users (Harden, 2012). Also, because his diagnosis came after advances in ART, he was able to illustrate the benefits of drug therapy and be an example of living in long-term remission from the disease.

AIDS and the Blood Supply It is now known that HIV is transmitted through blood products. However, this fact was still a matter of speculation during the first years of the epidemic. In 1982, the uncertainty ended when the CDC published a report that described an infant who contracted AIDS after receiving a blood transfusion (Harden, 2012). At the time, most blood donations were voluntary, and plasma (an ingredient in blood needed by hemophiliacs) was often pooled from multiple donors. But as we now know, only one donor need be infected to contaminate the entire pooled source (Donegan, 2003). The emergence of AIDS required changing the process of collecting blood.

Damian Dovarganes/Associated Press

Magic Johnson is a public example of a person with HIV continuing to live a full life.

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CHAPTER 4Section 4.5 Sociocultural and Policy Issues

The issue of how to protect the blood supply proved contentious (Harden, 2012). On January 4, 1983, a meeting was held at the CDC in Atlanta to forge consensus among stakeholders involved with blood banking. For epidemiologists at the CDC, the need for action was urgent—an infec- tive agent already threatened the blood supply. But others raised questions about the additional costs and administrative burdens of running the blood screening test and expressed concern that excluding all gay donors would mean an inadequate blood donor base. Although the original meet- ing failed to reach consensus, the CDC issued a report in March effectively prohibiting high-risk groups (e.g., men who had sex with men in the preceding 5 years, intravenous drug abusers, and commercial sex workers) from donating blood. This debate illustrates how the societal response to disease often raises thorny issues. Both sides in this dispute had the best interest of society at heart: ensuring an adequate supply of blood while making sure that the blood available did not risk the recipients’ health. See Table 4.3 for donor exclusion criteria used by the CDC.

Table 4.3: Donor exclusion criteria for preventing HIV transmission

CDC donor exclusion criteria regardless of HIV antibody test results

Men who have had sex with another man in the preceding 5 years

Persons who report nonmedical intravenous, intramuscular, or subcutaneous injection of drugs in the preceding 5 years

Persons with hemophilia or related clotting disorders who have received human-derived clotting factor concentrates

Men and women who have engaged in sex in exchange for money or drugs in the preceding 5 years

Persons who have had sex in the preceding 12 months with any person described in items above or with a person known or suspected to have HIV infection

Persons who have been exposed in the preceding 12 months to known or suspected HIV-infected blood through percutaneous inoculation or through contact with an open wound, nonintact skin, or mucous membrane

Inmates of correctional systems (this exclusion is to address issues such as difficulties with informed consent and increased prevalence of HIV in this population)

Source: CDC (1994). “Guidelines for preventing transmission of human immunodeficiency virus through transplantation of human tissue and organs.” Mortality and Morbidity Weekly Report, 43(RR-8), 1-17. Retrieved from http://www.cdc.gov/mmwr/preview/mmwrhtml /00031670.htm.

By 1984, the belief that AIDS was caused by a retrovirus was gaining widespread acceptance within the scientific community (Harden, 2012). In that year, heat treatment of blood products (a process known to neutralize HIV) was required in the United States. In 1985, the FDA approved a test for HIV, which led to universal screening of blood products in the United States; many other countries began testing their blood products in this year as well (Harden, 2012).

In addition to universal testing, HIV/AIDS has fundamentally transformed how health profession- als—especially those who might be exposed to a patient’s blood—interact with patients. From dentists to morticians to first responders, the wearing of gloves, masks, and eye protection are now standard (Harden, 2012). With the national blood supply being regularly tested and high-risk donors banned from giving blood, the risk of transmitting HIV through a blood transfusion is now extremely low.

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CHAPTER 4Section 4.5 Sociocultural and Policy Issues

Disease Prevention at the Community Level Just as the HIV-positive individual has a responsibility (at the micro level) not to engage in risky behavior, the community (at the meso level) likewise has a responsibility to help prevent the spread of HIV infection. In this public health context, the national government has played a guid- ing role. The CDC recommends that health departments and community planning groups (CPGs) collaborate to formulate HIV prevention strategies. Specifically, the CDC recommends that CPGs should support broad community participation in HIV prevention strategies, identify priority HIV prevention needs (a set of priority target populations and interventions for each) in each juris- diction, and ensure that HIV prevention resources target priority populations and interventions (CDC, 2003).

To achieve these objectives, the HIV prevention plan should draw on relevant epidemiological infor- mation on the incidence and prevalence of HIV within the community, as well as assess the par- ticular community service needs of the at-risk populations within the community. In general, the priority for prevention activities should be the current HIV-positive population, followed by those uninfected populations that are at highest risk (e.g., sexual partners of HIV-positive individuals). As recommended by the CDC, the CPG is required to develop at least one such plan every 5 years. The existence of such a plan can provide a benchmark so that the success or failure of future HIV prevention strategies can be more objectively assessed through a process of program monitoring.

Case Study: The AIDS Memorial Quilt Perhaps the most tangible cultural expression of HIV/ AIDS is the AIDS Memorial Quilt. Its origins date to an annual march honoring gay San Francisco Super- visor Harvey Milk and Mayor George Moscone, both assassinated by a rival politician in 1978. In 1985, one of the organizers, Cleve Jones, asked each marcher to carry a placard with the names of friends and loved ones who had died of AIDS. At the end of the march, the placards were taped on the wall of the San Francisco federal building, creating what looked like a patchwork quilt of names. This public artwork was the inspiration behind the creation of the AIDS Memorial Quilt. In June 1987, Jones and others for- mally established the NAMES Project Foundation to manage the creation of the quilt.

Although produced in San Francisco, the quilt was a truly national endeavor, as people from across the country sent panels in memory of those who had died. The inaugural display of the AIDS Memorial Quilt occurred on the National Mall in Washington, DC, on October 11, 1987. It subsequently toured cites in the United States and Canada. The entire AIDS Memorial Quilt was last displayed on the National Mall in 1996. This project has raised over $4 million for AIDS organizations, contains more than 48,000 names, and takes up 1.3 million square feet, making it the largest community art project in the world (The NAMES Project Foundation, 2011). For more in-depth background and images, go to the official website of this memorial project: http://www .aidsquilt.org/. For more information about interactive, digital exhibits of the AIDS Memorial Quilt and its history, visit http://quilt2012.org/news/.

Manuel Balce Ceneta /Associated Press

The AIDS memorial quilt is a national community art project created in remembrance of those who have died of AIDS.

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CHAPTER 4Section 4.6 Managing HIV/AIDS in an Ambulatory Care Setting

4.6 Managing HIV/AIDS in an Ambulatory Care Setting

As we have seen, the key to successfully managing HIV/AIDS is early diagnosis and compli-ance with the ART regimen. Therefore, the management of HIV in ambulatory care (i.e., outpatient) settings is crucial. In a survey of the literature on this subject, Van Manen, Laschinger, Stevenson, and Fothergill-Bourbonnais (2005) noted considerable variation in how HIV-infected people are treated in ambulatory care settings in North America. They suggested that there might also be variation in the patients’ level of care and, thus, level of well-being.

Collaborative Care Approach Despite this variation, Van Manen et al. noted that the overarching philosophy at these centers is a collaborative care model of treatment. They characterized this approach as “a condition of inclusionary care in which all care providers and receivers of care are involved at the highest level possible to achieve desired patient and family outcomes” (2005, p. 51). This model was developed at the San Francisco General Hospital during the early years of the epidemic and has since been widely adopted. Because it takes advantage of the social nature of treatment decisions, the model illustrates the necessity of the biopsychosocial approach when treating patients with HIV/AIDS. (For more on the biopsychosocial model of health care, see the discussion in Chapter 1.)

Also, this holistic approach to disease management is evident in the staffing arrangements in mul- tidisciplinary ambulatory care settings. As Van Manen et al. observed, “most clinics employ nurses, physicians, social workers,” as well as (sometimes) “psychologists, alcohol/drug abuse counselors, dentists, chaplains, dietitians, oncologists, clinical pharmacists, administrative personnel, speech therapists, and alternative care providers” (2005, p. 51). The management of HIV/AIDS is ideally a collaborative effort.

Reaching Out to Subpopulations Despite the efforts of multiple specialists, an empirical study based on interviews of HIV patients who received care in ambulatory settings indicated problems with the care of certain subgroups: Blacks, Latinos, women, injection drug users, heterosexuals, the uninsured, and those with Med- icaid coverage. Also, alarmingly, only about half of those interviewed were complying with recom- mended therapy (Shapiro et al., 1999).

Ultimately, Van Manen et al. (2005) summarized the challenges of providing care in an ambulatory setting as follows:

The challenge lies in the complexity and variability in disease progression, the multiple patient entry points into the care system, the multiple roles and func- tions of health care providers, and the discriminatory nature of the disease block- ing access to appropriate health care. (p. 55)

These words suggest that the major challenge of dealing with HIV/AIDS in the 21st century is no longer knowledge (what should be done) but action (ensuring therapeutic compliance of the tar- get population).

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CHAPTER 4Section 4.7 Conclusion: Toward an “Ecology of Disease”

4.7 Conclusion: Toward an “Ecology of Disease”

The need for a combined approach to managing HIV/AIDS reflects the complex ecology that characterizes how humans and HIV interact. In general, the “ecology of disease” could be characterized as an interaction among multiple factors: • The microbe, • The physical environment, • The social environment, and • The affected population

Because HIV/AIDS can be spread only person-to-person via bodily fluids, the physical environment is less important than for other infectious diseases. In contrast, cholera is spread through drinking water contaminated with the cholera bacillus, and malaria is spread through mosquito bites. How- ever, the microbe–population interaction is still important when determining therapy. Because the virus can mutate, an HIV-positive patient must be continually retested and have the cocktail ART regimen changed if evidence shows that a particular drug combination is no longer working. This again illustrates the need for continuing disease management at both the individual and the community level.

With HIV/AIDS, the social environment is crucial, as illustrated at the micro, meso, and macro levels. At the micro level, the individual has to deal not only with the personal stress and anxiety of having a chronic (incurable) disease but also with possible stigmatization by family and friends. This stigma may cause some people not to get tested for HIV, which means that they might infect others. At the meso level of work, school, and other institutions, stigma can manifest in more overt acts of discrimination (e.g., being terminated from a job, denied admittance to school, or denied access to housing). Although documented evidence showed discrimination against HIV/ AIDS patients during the 1980s, these social realities have given way to changes in cultural atti- tudes as well as specific policy changes at the meso and macro levels. These cultural changes have led to greater acceptance of gay, lesbian, bisexual, and transgender individuals, as seen in the growing acceptance in recent years of gay marriage.

Policy developments have made opt-out testing the norm for HIV, which has been shown to min- imize the stigma of being tested and to increase the number of people who receive testing. Also, the passage of the ADA in 1990 and HIPAA in 1996 made it unlawful to discriminate against indi- viduals based on their HIV status. Specifically, the ADA grants federal civil rights protection to anyone who “has a physical or mental impairment that substantially limits one or more major life activities, including major bodily functions such as the functions of the immune system.” (U.S. Department of Justice, 2012, para. 2). If an individual with HIV believes that he or she has been discriminated against, then a complaint can be filed with the Department of Justice for investiga- tion. HIPAA ensures that employees are not required to reveal their HIV status to their employers. As a matter of fact, many employers now provide EAPs where employees can discuss their HIV status in a confidential environment.

These legal and policy changes illustrate that societal responses can influence the spread of HIV in the future. That is, the arrows of influence do not just go from disease to society but also in the other direction. As the potential for stigma and discrimination lessens, more people might get tested, and more cases of HIV might be diagnosed. Also, if and when the ACA becomes fully

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Chapter Summary CHAPTER 4

implemented, many HIV patients will have greater access to ART, which has now been shown to prolong life even if it cannot eradicate the disease. From individual health care providers and public health education campaigns, HIV-positive individuals can receive information on how to prevent the further spread of the virus. These developments show that in order to successfully manage and reduce the spread of HIV/AIDS, the ecology of disease requires transformations in the social environment just as much as it requires advances in scientific knowledge.

Chapter Summary

During the last 30 years, HIV/AIDS has been transformed from a terminal acute disease into a chronic manageable condition. Consequently, HIV-positive individuals now manage their condi- tions over the course of years and decades rather than weeks or months. This disease has acti- vated a wide array of psychosocial issues that have to be dealt with at the individual, community, and societal levels. It has also become more politically charged than any health crisis in recent history.

When AIDS first appeared, the natural progression of the disease (or even its etiology—that it is caused by a virus) was unknown. Now, it is known that AIDS is caused by a retrovirus, HIV, and that it progresses in three stages: an acute primary infection (shortly after initial exposure); a latency period of several years; and a final stage in which the virus destroys the patient’s immune system, allowing other opportunistic infections to cause death. We now realize that the first reported cases of AIDS in the early 1980s were of individuals who had already progressed to the third, ter- minal stage.

Although researchers still hope that a vaccine will be developed, the primary therapeutic success has been the creation of an array of drugs that prevent the virus from multiplying and thereby destroying CD4 cells. Given the challenges of developing a vaccine, prevention efforts have focused on changing human behavior to curtail the disease’s spread. Because HIV is spread through the transmission of bodily fluids between individuals (e.g., blood, semen, breast milk), the types of behaviors that put an individual at risk are clear: blood transfusions, sharing injection needles among drug users, prenatal or perinatal MTCT (either in utero or through breast-feeding after birth), and various forms of sexual activity (anal sex conferring the highest risk).

Each transmission method has spawned its prevention strategies. In 1985, the HIV/AIDS-I anti- body test became a requirement for testing each unit of donated blood in the United States. Consequently, today the risk that anyone will contract HIV from receiving a blood transfusion is low (CDC, 2006a). Similarly, the introduction of ART has dramatically reduced MTCT of the virus in the developed world. Even so, approximately 50,000 newly diagnosed cases of HIV infection occur in the United States annually, and the rate is increasing among certain groups (e.g., men who have sex with men, aged 13-24; CDC, 2012c). These statistics suggest that targeted outreach efforts must continue for those who engage in risky sexual behavior and intravenous drug use. These examples illustrate that dealing with HIV/AIDS (at the macro level) requires a combination of scientific research and public health planning to influence human behavior, but these efforts have had mixed success.

Increasingly, HIV/AIDS will be dealt with from the perspective of chronic disease and disability, because the patient population is aging. By 2015, it is estimated that more than 50% of the people who suffer from HIV/AIDS in the United States will be more than 50 years old. In addition to being

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Key Terms CHAPTER 4

acute retroviral syndrome (ARS) Also known as primary HIV infection, a series of flulike symptoms that occurs 2 to 4 weeks after initial HIV infection.

ambulatory care An outpatient setting, such as a hospital or clinic, where a patient receives medical services in a single day and then leaves.

American with Disabilities Act of 1990 (ADA) Legislation that sets out how employers must make reasonable accommodations for disabled workers, including those with HIV/ AIDS.

antiretroviral therapy (ART) A treatment regimen that interferes with viral replication. Since the mid-1990s, this has been the main treatment for an asymptomatic HIV-positive individual seeking to postpone the emergence of AIDS. Also known as highly active antiretro- viral therapy (see HAART).

collaborative care A philosophy of treatment in which health care providers (e.g., physicians, social workers, psychiatrists) share roles and functions to create optimal outcomes for patients and families.

community planning groups (CPGs) Repre- sentatives from local communities that work with health departments to reduce cases of HIV/AIDS at the community level.

comorbidity The presence of disease in addi- tion to the primary infection (e.g., with AIDS, often tuberculosis or hepatitis C).

discrimination The process of differentiating or distinguishing; also, a prejudicial outlook, action, or treatment (e.g., denial of education, housing, or employment) based on a stigmatiz- ing view of a person.

HIV-positive and taking a daily regime of at least three antiretroviral drugs, these individuals will also begin to suffer from the other chronic conditions of aging, including hypertension, heart dis- ease, cancer, and stroke. These conditions often require daily medications as well, which means that the chronic disease management of older HIV/AIDS patients will involve assessing increasingly complex cases and multidrug interactions. Also, the premature aging that occurs in HIV-positive individuals could conceivably put greater financial strains on the U.S. health care system, which was designed to treat acute episodes rather than provide chronic care (Thrall, 2005; see Chapter 10 on this paradox of health policy).

At the community level, continued public health planning should ensure that at-risk populations can be targeted to prevent the spread of the disease. Among those already diagnosed, ambulatory care centers need to continue working on multidisciplinary approaches to prevent discrimination against patients seeking treatment and to ensure drug compliance among those already infected.

If diagnosed and treated, HIV/AIDS does not have to produce disability during its long latency period. However, it has clearly become a chronic condition that must be dealt with at the individ- ual level (through daily medication), at the intermediate level (through antidiscrimination prac- tices in the workplace and elsewhere), and at the national level (throughout ongoing policy devel- opment and research funding by various federal agencies).

Key Terms

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Key Terms CHAPTER 4

drug resistance The tendency of a drug to become less effective over time as a particular patient develops immunity to its effects; the reason that HIV patients need to have their drug regimens monitored and updated as needed.

Employee Assistance Program (EAP) A confi- dential service provided by some employers to help employees make decisions about sensi- tive issues that could affect work performance (such as HIV status). The service is free and is usually extended to an employee’s family members.

epidemic A sudden increase in the frequency (incidence) of a disease above its normal level in a specified region, or among a specified group of individuals; often associated with psychological feelings of panic in the affected population.

etiology The underlying cause of a disease or abnormal condition.

health disparity The difference in overall health status among groups of people based on various factors such as race, socioeconomic status, and geographical location.

Health Insurance Portability and Accountabil- ity Act of 1996 (HIPAA) Legislation that pro- tects individuals and families covered by group health plans from being excluded from cover- age for preexisting medical conditions when employees change jobs or health plans. The act also protects patients’ privacy in disclosure of health information to third parties.

hemophilia A hereditary blood disorder in which blood fails to clot normally.

highly active antiretroviral therapy (HAART) See antiretroviral therapy.

mother-to-child transmission (MTCT) The principal way for infants and children to become HIV-positive; can be either prenatal or perinatal (through breast-feeding, etc.).

opportunistic infection An infectious condition that can become serious or life-threatening in an individual with an impaired immune system.

opt-out screening A form of HIV screening recommended by the CDC: the patient is informed that testing for HIV will be performed but may still elect to decline being tested for this condition. Assent is presumed unless the patient explicitly states otherwise.

outbreak A sudden increase in the frequency (incidence) of a disease above its normal level in a specified region, or among a specified group of individuals. Similar to an epidemic, but not as likely to produce a sense of psycho- logical panic.

perinatal transmission The transmission of HIV virus from mother to child during preg- nancy, labor, delivery, or breast-feeding.

preexisting condition A medical condition that, before implementation of the ACA, might cause a private insurance company to deny individual health coverage or charge much higher rates for it.

preexposure prophylaxis Administering a daily dose of a drug to at-risk individuals to decrease the likelihood that they will become HIV positive.

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Key Terms CHAPTER 4

psychosocial Involving both psychological and social aspects of a subject; how social condi- tions affect mental health.

retrovirus A group of viruses that carry their genetic blueprint with them. They are called retro because they operate in the reverse of the normal cell processes. This unique charac- teristic makes it possible for them to become a permanent part of the cells they infect.

sexual orientation A long-term pattern of behavior, attraction, emotions, and identity toward a particular sex; includes heterosexual, homosexual, and bisexual orientations. Some- times described as sexual preference.

sexually transmitted disease (STD) Diseases transmitted among sexual partners via inti- mate contact.

socioeconomic status (SES) Measure based on education, income, and occupation of an individual’s economic position in society. SES and disease have frequently been shown to be correlated.

sperm washing or bleaching A procedure that separates the infected semen from the sperm. The sperm are then bathed in a synthetic semi- nal fluid, allowing an HIV-positive man to have biological children with reduced risk of infect- ing his partner or child with the virus.

statistically significant A term used to char- acterize the results of clinical trials and epide- miological studies in which the difference in outcomes between interventions are unlikely to have occurred by random chance.

stigma A physical or social characteristic that is labeled undesirable by a society.

syndrome A collection of signs and symptoms that is broader in scope than a single disease; a cluster of related conditions.

transgender A person whose sexual identity as male or female does not match the biolog- ical sex at birth. In some cases, an individual undergoes surgical or hormonal therapy to change his or her biological sexual characteris- tics to those of the opposite sex.

viral load A measure of the density of virus particles in the blood. In HIV, expressed as serum copies/mL.

viral set point The mean viral load for an HIV-positive patient during the latency phase of the infection.

virologic failure A type of treatment failure in which the virus reemerges because of drug resistance, drug toxicity, or a patient’s non- adherence to the treatment regime. Virologic failure is associated with a viral load of more than 200 cells/mL.

virus An organism that invades living cells, which it requires in order to survive and repro- duce, causing infectious disease (e.g., AIDS).

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Critical Thinking and Discussion Questions CHAPTER 4

Critical Thinking and Discussion Questions

1. Discuss the implications of the transformation of HIV/AIDS from a life-threatening infec- tious to a long-term chronic condition. Do you think that this makes it easier or harder to deal with being HIV positive at a personal level? Do you think it would make it easier or harder to justify increased funding for AIDS research when it is viewed as “just another” chronic disease?

2. Consider the problems of disease management that an HIV-positive individual faces. How are these problems similar to those faced by others with chronic conditions (e.g., diabetics)? How are the problems that an HIV-positive individual must confront different or unique?

3. Do you believe that there is still stigma associated with being HIV positive? If you, as a health care worker, witnessed a person being discriminated against based on HIV status, what would you do? Specifically, what resources could you draw on to determine the most appropriate course of action?

4. AIDS has been the subject of multiple plays, movies, and television dramas. Why do you think it has become such a catalyst for artistic expression? Do you think that this is related to the disease’s association with sexuality and death?

5. Suppose that you work as a member of a multidisciplinary team that treats AIDS patients. If your primary patient population consisted of Medicaid patients and the unin- sured, what types of issues—both medical and sociological—do you believe you would have to deal with on a regular basis? By contrast, if your team worked primarily with patients who had health insurance through an employer, do you believe that you would confront a different set of issues? What do your answers say about the relationship between socioeconomic status and AIDS as a sociological phenomenon?

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