HHS 435 Cont Issues, Trends, Health Law Ethics in H & HS WK3-1

Chapter 13 WORKING WITH PEOPLE WHO LIVE WITH HIV AND AIDS: THE PROBLEM AND HUMAN SERVICES

WM. LYNN MCKINNEY

As a human service worker, you are almost certain to have clients who are people living with human immunodeficiency virus (HIV) and persons living with AIDS (PWAs). This is true because AIDS affects people of all ages, sexual orientations, and ethnic and minority groups and because the needs of PWAs and people living with HIV are numerous and span virtually all human service programs. Because AIDS is an illness, there are medical needs. Since most PWAs eventually must stop working, they have income needs. The number of children who have HIV is growing, and these young people may have educational needs. For several reasons, there are likely to be psychological and social needs.

First of all, AIDS occurs primarily in people younger than fifty, which means that PWAs must deal with a fatal illness at an early age. Second, AIDS is found mainly in marginalized people such as homosexual men, injection drug users, and racial and ethnic minorities. Still another reason that PWAs may have psychological needs is that many of them will have many friends who are seriously ill or who have died. The effects of such losses are potentially enormous. Thus, the entire human service system is involved in working with people living with AIDS and HIV. So, as you enter the field, it is important that you know about HIV and AIDS and society’s reactions to the disease.

Working with people with AIDS and HIV presents particular challenges. Many people with this illness will not have close ties with their families who may have turned their backs on what is perceived to be a social embarrassment. Most will be poor, some because they were poor when they became sick and others because the disease is impoverishing. Death from AIDS-related causes can be horrible; the diseases and infections that affect a PWA can leave people thin and weak and seemingly defenseless for long periods of time. Unlike those with other illnesses, PWAs may be very sick and close to death for a while and then go through long periods of good health when they can lead happy, productive lives. As more cases of AIDS are diagnosed among drug users, more clients may be difficult to work with. Finally, with more women contracting the virus and dying, there are orphaned children who are not infected as well as children who were born with the virus. Many of these children are not or cannot be cared for by their mothers or other relatives.

However, working in the HIV field can be rewarding. As you must know, as you are planning to enter the human service field, all work with people is rewarding. If your interest is in research, you can become involved with learning more about the virus, thus increasing the probability of a cure, a vaccine, or better care for people who are HIV positive. If you work with individual clients, you will no doubt develop intense, deep relationships with many of them; some of these will be enormously enriching, revealing to you some of the best aspects of humanity. Work with HIV will probably stretch you professionally, broadening your knowledge and experience so that, should you decide to change jobs, you will present an attractive array of qualifications to prospective employers. Finally, you can gain satisfaction knowing that you are working with people, many of whom live on society’s margins, and doing what you can in response to a pandemic—a worldwide outbreak of a disease affecting an extraordinarily large percentage of the population.

You probably knew some things about HIV by the time you entered college. But because it is a politically charged issue, the quantity and quality of HIV education varies greatly. Although we may review in this chapter some material that you already know, there will also be material that is new to you. The objectives of this chapter are (1) to solidify your basic medical understanding of HIV and AIDS, (2) to help you understand some of the social ramifications of HIV, and (3) to acquaint you with current issues. This chapter is only an introduction to the topic. Reading about HIV and AIDS in books, newspapers, and professional journals should be a part of your professional growth. We urge you to become involved in AIDS service organizations (ASOs) as well. Practical experience is an excellent means to expand your knowledge.

HIV AND AIDS AS MEDICAL ISSUES

In 1985 the specific virus that is believed to cause AIDS was identified. It is human immunodeficiency virus (HIV). Today there are two strains of HIV active in the United States. The most prevalent strain is HIV-1, which has been with us since the early 1980s. The virus is constantly mutating as new medications are developed. We still know much less about HIV and AIDS than we wish we did. Fortunately, research is revealing new information to us regularly.

Acquired immune deficiency syndrome (AIDS) was first noted in the United States very early in 1981, but it was not until three or four years later that it was identified as a syndrome and given a name. Doctors in San Francisco and New York began to notice that they were treating a new group of patients, primarily gay and bisexual men in their twenties and thirties, for a series of diseases that were highly unusual among healthy young people. Initially what doctors were seeing was called gay-related immune deficiency (GRID) because it was noted exclusively in gay men. Eventually the medical profession developed the description Acquired Immune Deficiency Syndrome (AIDS). The words that make up the acronym AIDS provide specific meaning. (For an incisive account of the early years of the disease in the United States and for insight into the politics of this illness, read And the Band Played On by Randy Shilts.)

The A in AIDS, which stands for “Acquired,” indicates how a person gets the disease. AIDS is a communicable disease; a person must get it from someone else. In this sense, it is like hepatitis, a cold, or measles. AIDS is not inherited like some diseases such as sickle cell anemia and Tay-Sachs disease. Unlike some other diseases, (e.g., cancer), it does not just begin inside an individual, in many cases for unknown reasons. People have to get AIDS from someone else, and it is not easy to get (we emphasize this fact and explain what it means later in this chapter).

The I and the D stand for “immune deficiency,” which refers to the characteristics of this disease that make it unlike any other disease. Instead of making you sick directly, HIV attacks the helper T cells in the human body. These helper T cells are important for us to be able to fight off infections. When they become weakened, our bodies become vulnerable to other diseases, virtually all of which we ordinarily are resistant to. This literally causes a deficiency of the body’s immune system, leaving the infected susceptible to a wide variety of infections that ordinarily would not affect noninfected individuals.

Finally, the S stands for “syndrome.” A syndrome is a collection of symptoms and effects of other diseases. AIDS is considered to be a syndrome because a person with AIDS does not die of AIDS but rather of other diseases, most of which were rarely seen in the United States until the advent of AIDS. These diseases, commonly called “opportunistic infections,” can occur because T cells are destroyed and can no longer ward off infections.

People with HIV may continue to be asymptomatic for many years, but eventually symptoms will appear and a diagnosis of AIDS can be made. For two reasons it is important to have a clear diagnosis. First, there is a psychological impact on the infected individual of having AIDS versus having HIV. Different sorts of supportive services may be necessary as an individual progresses from knowing that he or she is infected with HIV to knowing that he or she has AIDS.

Second, once someone is determined to have AIDS, he or she may become eligible for a variety of state and federal programs. Initially a person was diagnosed with AIDS if he or she had any one of two or three diseases or opportunistic infections; pneumocystis carinii pneumonia (PCP) and Kaposi’s sarcoma, a rare form of skin cancer, were the most common. In early 1993, the Centers for Disease Control (CDC) in Atlanta changed the way in which it defined whether a person had AIDS. Now a person is classified as having AIDS if his or her helper T lymphocyte count falls below 200 (ordinarily the helper T count ranges from 800 to 1,200) and if he or she also has at least one of the specific diseases associated with AIDS.

The definition was changed because it had been much more useful in diagnosing AIDS in men than it was in women. Since women experience the disease differently and since more and more women now have AIDS, it was important to change the definition.

The two opportunistic infections that are the greatest killers of men are PCP and toxoplasmosis. Toxoplasmosis is a chronic, severe brain infection. Toxo is a common parasite that is found in most everyone. As is true of all other opportunistic infections, it is fought off by healthy immune systems. However, in individuals whose immune systems are compromised, toxo can become activated, resulting in blindness, paralysis, and dementia. Fortunately there are now prophylactic treatments for both of these diseases.

Women with HIV are more likely to develop other diseases, particularly yeast infections, invasive cervical cancer, recurrent bacterial pneumonias, and bloodstream infections. Recently an increase in the number of cases of pulmonary tuberculosis has been noted.

Unless it is your intention to enter the medical field, this is probably enough for you to know about the medical aspects of AIDS and HIV. As you become involved with PWAs, you may need to increase your medical knowledge, but, as we repeat often in this chapter, knowledge about AIDS is increasing rapidly, and you should learn more as part of your continuing professional development and as the need confronts you.

The Transmission of HIV

HIV is transmitted through bodily fluids, specifically blood, semen, and vaginal fluid. Although the virus is present in other bodily fluids such as tears and sweat, it is found in such slight concentrations that these fluids are not considered dangerous. HIV is difficult to transmit. There are very few ways in which HIV can be transmitted from one person to another. Unprotected sex and sharing needles are the two most common ways. A third way is across the placenta from an infected woman to her unborn child. Until 1985, HIV was occasionally transmitted by blood transfusions, but since that time the U.S. blood supply has been considered safe because of donor screening and because all blood to be used for transfusions is tested before it is given to someone.

HIV is not easy to catch because, for a person to be exposed to the virus, it must enter a person’s bloodstream. This can occur when individuals share an unsterilized needle to inject steroids or other drugs. It can also occur during unprotected sex, either vaginal, anal, or oral. But again, for infection to occur, the skin must be broken. This often occurs during anal intercourse, can occur during vaginal intercourse, and can occur during oral sex if the person performing oral sex has skin breaks such as canker sores or unhealthy gums. Tears in the skin need only be microscopic in size for transmission to occur.

Sexual transmission of HIV from men to women is much more common than from women to men. This is true because the skin must be broken for the virus to cross from one individual to another and because the virus is present in dangerous concentrations in semen. It is more likely that the lining of the vagina or anus will experience a tear during sex than it is that the penis will suffer some sort of skin break. Infection from a man to a woman is more likely because sex commonly results in the ejaculation of semen. The most risky form of sex between men is unprotected (i.e., without a condom) anal intercourse.

Infection is less likely during oral sex but can occur if semen is ejaculated. It is possible for the person performing oral sex to infect his or her partner only if infected blood somehow enters the sexual partner’s penis such as if he or she has strep throat or other infectious lesions in the throat. Sex between two women and oral sex by a man on a woman rarely result in transmission, but it is possible. Use of dental dams during such oral sex is urged.

One quarter of babies born to infected mothers are born with the virus, but we now know that pregnant HIV-positive women who take AZT during the last three months of pregnancy and receive an infusion of AZT during labor and delivery can reduce to 8 percent the probability that their babies will be born infected. Why the virus crosses the placenta in some cases and not in others is not known at this time. As part of your continuing professional growth, you should regularly read newspaper and journal articles about AIDS and HIV to stay informed. Research is making great strides, and you, as a human service student and professional, are responsible for keeping your knowledge current.

Epidemiology

The epidemiology of a disease is the way in which it spreads. AIDS was first recognized among gay men in New York and San Francisco when doctors began treating patients who were suffering from pneumocystis carinii pneumonia (PCP) and from Kaposi’s sarcoma, a skin and/or blood vessel cancer. Ordinarily most people are immune to both of these diseases unless they are pregnant or elderly, but because HIV destroys the immune system, infected people can develop these and other opportunistic infections. It is believed that HIV was introduced to the North American continent by an infected gay man who had sex with other men who then had sex with others. Because of this, for the first decade of its existence, AIDS most heavily affected the gay male population in the United States. This is not true of the epidemiology of the disease in other countries, where it is almost exclusively a heterosexual disease.

Because large numbers of gay men live in the largest American cities, nearly all early recognized AIDS cases were found in New York, San Francisco, Chicago, and Los Angeles. However, the epidemiology of the disease has changed in recent years. AIDS is still primarily an urban disease, but cases are now reported in virtually all cities and towns across the country and among all demographics.

In response to scientific discoveries about how HIV was spread, many gay males altered their sexual behaviors, thus somewhat slowing the transmission of HIV in the homosexual population. The Centers for Disease Control (CDC) reported in late 1997 that AIDS had dropped from first to second as the leading killer of adults between the ages of twenty-five and forty-four. There was a 26 percent drop in AIDS deaths from 1995 to 1996, the first decline since the epidemic began in 1981. However, there has been slow spread of the disease into the general heterosexual population, and minority populations are now particularly vulnerable. Currently, 20 percent of reported AIDS cases occur in women, and sex with infected men has replaced drug use as the primary means for women to contract the virus.

In part because of the spread of the illness and in part because people with HIV are living longer, there are now many more people who have the virus. It is estimated that nearly 250,000 people with AIDS were living in 1996. Although progress may seem maddeningly slow, researchers are regularly discovering new prophylactic and infection treatments. Many of these delay the onset of opportunistic infections and thus improve the quality of life of PWAs and people living with HIV. Other treatments appear to dramatically prolong the lives of PWAs.

Predictions for the Future

The CDC is the reporting body that tracks AIDS and other diseases. Its predictions about the spread of AIDS have been reasonably accurate for the past several years. The CDC has reported that AIDS replaced murder as the tenth most common cause of death in the United States in 1990 and the ninth most common cause in 1991 and would probably continue to climb the statistical ladder. Among young people in 1990, AIDS was the third most common cause of death; only cancer and accidents killed more young Americans. In 1993, AIDS became the most common cause of death among men aged twenty-five to forty-five and, as reported above, has now dropped to second.

The epidemiology of AIDS varies in different countries. In some African countries, AIDS is much more prevalent than in the United States and is exclusively a heterosexual disease. In Zimbabwe, for example, one of every seven persons is believed to be infected, or 1.5 million out of a population of only 10.5 million people. Roughly 80 percent of new infections are occurring in developing countries. It was expected that by the year 2000, 2 percent or more of the world’s population would be infected with HIV. A vaccine is yet to be developed.

These grim statistics underscore the importance of clear, early AIDS education for all people. But this education may not be enough. Many young Americans do not believe that they are vulnerable to the virus because they are not members of the groups most heavily infected; and because of the length of time it takes for symptoms to appear (perhaps ten or more years), most believe that they don’t know anyone with HIV. This sense of “invincibility” results in willingness to engage in high-risk sexual practices. There are many indicators suggesting that young gay men are resuming unsafe sex practices. In late 1997 the CDC reported that cases of gonorrhea in gay men in many U.S. clinics had doubled. This is in contrast to the overall decline in gonorrhea cases in the United States. As a human service worker, you must take responsibility for helping everyone with whom you work understand this disease and how it is spread.

HIV AND AIDS AS SOCIAL ISSUES

Throughout this chapter we use the terms HIV and AIDS in a variety of ways. It is important to remember that HIV is the virus and AIDS is the name for the resulting illness.

As is true of many new diseases, AIDS raised an array of sociopolitical issues. These issues resulted from the unusual epidemiology that was discussed above and from the fact that HIV was transmitted by practices that Americans would prefer not to talk about. We discuss three major social issues in this chapter: (1) who has AIDS, (2) AIDS education, and (3) infection as the result of personal behavior.

Who Is Most at Risk for HIV?

Quite likely no disease that has affected and will affect virtually all Americans has been so poorly understood as HIV. It is clearly the most highly politicized disease of our times, primarily because it was initially found only in gay and bisexual men and was thought of as a “gay disease.” To have HIV/AIDS meant shame and embarrassment for many sufferers and their families, and people tried to hide it. Initially people tried to cover up the fact that both the actor Rock Hudson and pianist Liberace had contracted AIDS. More recently, after Rudolph Nureyev died, his relatives brought suit against his doctor in France for revealing that AIDS-related diseases had killed the legendary dancer. Obituaries in large and small cities and towns across the country routinely veil the real cause of death with such phrases as “after a lengthy illness.” Surviving family members continue to deny that the deceased had AIDS and, in many cases, that he or she was gay, bisexual, or a needle drug user.

Most heterosexual Americans, unless they are touched through the illness of family members or friends or become particularly interested in the disease, assume that HIV is something that they would never have to worry about. We now know that everyone must be concerned about AIDS. It is almost certain that every one of us knows someone who has HIV or AIDS or who has died of the disease. If you do not know someone who has the virus, it may be because they have chosen not to reveal their status to you. From college classrooms to corporate boardrooms, HIV and AIDS are affecting all racial, religious, and socioeconomic groups.

HIV quickly moved beyond the gay male population, primarily into the population of injection drug users and then into racial and ethnic minorities. In 1996, 60 percent of all AIDS cases in the United States occurred among African Americans and Latinos. African Americans are only 12 percent of our population yet account for 41 percent of AIDS cases, and Latinos, who comprise 9 percent of the population, account for 19 percent of people living with AIDS. Although overall the incidence of AIDS is declining, there was a 19 percent increase in diagnoses among heterosexual black men and a 12 percent increase among heterosexual black women in 1996.

Because HIV is transmitted almost exclusively by unprotected sex and sharing needles, the American population has been squeamish about discussing it. Because children are considered to be asexual and because society legislates as if it disapproved of sex between unmarried people and between members of the same sex, we have been unable to develop a consistent policy concerning AIDS education.

HIV Prevention/Education Issues

The spread of HIV could be greatly reduced if everyone stopped having sex and using drugs. Equally true is the fact that tuberculosis would soon be a disease of the past if we all stopped breathing. All of these have about the same probability. The spread would also be slowed if everyone who is not in a long-term, monogamous relationship in which both partners know they are HIV negative would always use a condom when having sex and if everyone who used injection drugs would either never share their needles or would “clean their works,” that is, use bleach to clean needles before passing them on to the next person. Since we know this, it would seem to be a simple matter to teach people to use condoms and to clean their works. However, education about these two forms of HIV prevention has encountered great resistance in our society.

Much of our society shuns gay people and drug users and is squeamish about discussing sex. In numerous communities, elementary and secondary schools are not allowed to discuss sex at all. Although the climate has improved in the last decade, the 1993 reigning Miss America was prohibited from using the words “condom” and “AIDS” in some high schools while on a speaking tour in Florida. In some schools in which sex education is allowed, gay sex may not be discussed. Many people make the erroneous assumption that young people are actually encouraged to try out behaviors they might learn about in sex education classes. Use of condoms conflicts with some religious teachings. And many people believe it is impossible that they, or anyone they know, could ever become infected or even know someone with HIV or AIDS. So, some Americans are growing up not knowing they may be vulnerable to a fatal illness, and they are not being taught how to avoid contracting it.

Reluctance to be clear about HIV has resulted in surveys revealing that 25 percent of respondents believed that you could get HIV from a mosquito, 33 percent thought that you could contract HIV by donating blood, and 25 percent believed that an HIV vaccine exists. All of these are absolutely false.

There is continuing resistance in this country to advertising about condoms on radio and television, on billboards, and in the print media. Virtually everyone in our society over the age of twelve probably knows about condoms, but without advertising, the use of condoms has not increased as much as needed. Instead of promoting condom use, we have continued to pretend that young people are not having sex, and we have continued to tell them not to. A 1993 survey of teenagers revealed that 56 percent of teens aged sixteen and seventeen had had intercourse at least once. It may be best for young people not to have sex, but until we can ensure that they will abstain, it is important for us to convince them to protect themselves from a disease that currently is almost certainly fatal.

The resistance to helping people clean their needles with bleach had been even stronger. But now, needle exchange programs are operating throughout the country. In such programs, injection drug users are encouraged to turn in their used needles for clean needles each time they use them.

There are three very important HIV education messages that every American, particularly young people, ought to know. First, do not have sex outside marriage or a long-term monogamous relationship, or, if you do, learn the HIV status of your partner and always use a condom during sex. To be blunt, the message needs to be, “If it is up, it is covered.” And, always use a dental dam if performing oral sex on a woman. Second, do not use drugs, or, if you do, either do not share needles or clean your needles carefully with a bleach solution after each injection. Finally, women who are HIV positive should carefully consider the risks to themselves and their unborn children should pregnancy occur.

As the gay community learned early in the epidemic, sex without penetration is not only possible but quite erotic and, for many gay males, has become the method of choice. It certainly is preferable to contracting an almost certainly fatal illness.

NEEDS OF PERSONS LIVING WITH HIV AND AIDS

There are three major continuing needs of PWAs: (1) fighting discrimination and violence, (2) having access to affordable health care, and (3) receiving assistance with everyday life. As you can see, these needs span the whole human service field, involving politics, economics, psychology, and human development. If you decide to work in the AIDS field, your clients will have many problems that most of us may never have to confront. With recent dramatic medical advances, PWAs are living longer and there is a new set of problems, including reentering the job market, finding sources to pay for very expensive medications, and psychologically trying to adjust to the possibility of living for a much longer time than previously thought.

The first step that a PWA or you, if you are an advocate or case manager, should take is to contact your local AIDS service organization. Virtually every city now has one, and many smaller areas do, too. These organizations are usually nonprofit, but there is an increasing number of for-profit agencies that will provide an array of services. These may be affordable if your client has insurance coverage. In the southeastern New England area there are several nonprofit agencies. One is AIDS Project RI in Providence, Rhode Island. It was formally incorporated in 1985 by a small group of volunteers in response to the growing numbers of AIDS cases in the area. With an annual budget of roughly $900,000, the Project offers education, outreach to the gay and minority communities, case management, and a national newsletter in Spanish entitled Quipu. Another nonprofit organization is AIDS Care of RI, whose purpose is to provide housing assistance and case management for PWAs.

AIDS service organizations (ASOs) vary. Some focus more on education and less on direct services. They may provide a strong referral service. Others are direct service organizations that assist clients with a broad range of needs. And now more non-AIDS organizations are providing AIDS-related services such as support groups, counseling, and testing. An ASO may provide a caseworker to your client, in which case you may no longer need to be involved with HIV issues, but you may need to follow your client for other reasons not related to HIV. You should stay involved until you are certain that your client is being well served.

Medical and Dental Needs

There is no vaccine for HIV, and none is on the horizon. Nor is there a cure for HIV. The medical needs of persons with HIV and AIDS focus on prevention and treatment of the specific opportunistic infections to which an individual becomes vulnerable. Dental needs are greater than those of people who do not have the virus. HIV positive people should have their teeth cleaned four times yearly, as more symptoms appear in the oral cavity than elsewhere; PWAs need high-quality dental care. The problem that many confront is the small number of dentists who are willing to treat them.

Many people, once they learn they are HIV positive, begin to take one of a small number of medications that are believed both to prolong and to improve the quality of life of those living with HIV. The choice of which drug to take depends on a variety of factors, including the preferences of one’s doctor, the drug currently thought to be most effective, and the insurance plan of the patient. Most common in 1997 was a so-called “cocktail” of three medications, often AZT, a protease inhibitor, and one other. This combination of drugs shows great promise in dramatically prolonging the lives of PWAs.

From the perspective of the medical profession, PWAs present risks to medical personnel. Many medical and dental procedures result in blood loss, and that blood must be viewed as lethal. Astute and ethical physicians and dentists insist that all their staff take universal precautions, such as wearing rubber gloves when working with all their patients, not just PWAs. They and their patients may not know who is and who is not carrying the virus. Universal precautions reduce enormously the risk of transmission, although there have been a small number of accidents that resulted in infected blood entering the bloodstream of a medical worker. People with the virus should also insist that medical personnel use universal precautions, since they are at much greater risk for other diseases than are noninfected people. In fact, all of us should insist that universal precautions be taken by all medical and dental personnel who treat us and our clients. These measures serve to protect all of us.

As a human service worker, you may have to advocate for or be a case manager for a PWA. This responsibility will require your negotiating with the medical establishment. For some PWAs this presents no problems, but for others it is quite difficult. There are still only a few doctors, mostly in cities, who have chosen to specialize in treating PWAs and therefore know enough about the disease to be “patient friendly.” In your role as advocate, you may need to be very tough in insisting that your clients get the treatment they need. There may be times when your client has no one else to help him or her and may be too ill to manage his or her health care effectively.

Income Assistance

Because of prophylaxis and newly developed treatments, PWAs may live for many years after learning of their HIV status. People with HIV and AIDS may eventually have to quit work because their energy levels simply do not permit them to continue. Unemployment will likely result in a dramatic reduction in income. They may need assistance in getting access to the government programs to which they are entitled. Many PWAs have never had to rely on income assistance programs, and they may be completely ignorant of the process of applying for benefits.

By federal law, having AIDS means that a person is disabled. This entitles PWAs to Supplemental Security Disability Income (SSDI). The process of applying is not very complicated, but it can be nearly impossible for someone who is very ill. If the disease requires hospitalization or relocation, your client may need your dedicated and skilled assistance. Beyond that, it takes five months to begin to collect SSDI benefits. The federal government wants to make sure that they are supporting people only if they are truly sick, so they have imposed a waiting period. Once begun, the benefits are paid retroactively, but the delay can be financially devastating. Many must apply for General Public Assistance to support themselves while waiting for their SSDI benefits to begin.

We noted above that the change in the definition of who has AIDS has had an impact on the lives of PWAs. Because the disease is now defined by a combination of helper T cell count and one disease commonly associated with AIDS, many more people qualify for SSDI. Previously it was necessary to have either Kaposi’s or PCP. Since many women PWAs never developed either of these diseases, they were prevented from qualifying for disability income. This change in federal law has helped ease some of the money problems of many PWAs, particularly women. For all people with AIDS, the changing medical picture also affects who becomes eligible for federal benefits.

Now, with the development of protease inhibitors and the more common practice of prescribing a combination of drugs, PWAs who routinely assumed that they would live no more than six more months are learning that they may live for fifteen or twenty years. These people must begin to consider retirement plans again, how to secure employment that lets them monitor their energy levels, and how to secure health insurance that will pay monthly medical costs that may be as high as $3,000.

Housing

Housing may be an issue for your clients living with HIV and AIDS. The Americans with Disabilities Act (ADA) of 1992 protects PWAs in the areas of housing, employment, and public accommodation. Still, not everyone is aware of the law or intends to obey it. This may mean that individuals who suddenly become sick, lose their jobs, and may have to “come out” to family and friends now also have no place to live. Subsidized housing is a possibility, but the waiting lists in virtually all cities are so long that this option is not always feasible. AIDS service organizations, such as AIDS Care of RI, help people with housing needs, so you should make yourself aware of what is available in your area.

Many PWAs own their own homes and are able to stay in them. Others move in with friends or family. Some, however, may have no place to go. Fortunately, a growing number of residential facilities are dedicated to PWAs who otherwise might be homeless. AIDS Care of RI owns two residences with individual rooms for PWAs who help keep the houses clean and cook communally. In addition, the organization rents apartments throughout the area and provides scattered-site housing and other support services for many more people.

A part of AIDS Care of RI is what was formerly called the Family AIDS Center for Treatment and Support (FACTS), a home for up to seven children born to HIV-positive mothers who may or may not have the virus and whose families cannot or will not care for them. These examples from Providence were chosen to illustrate the breadth of services available even in a small city (population slightly under 200,000).

Employment

People with HIV who are working may need flexible hours or a reduction to part-time work. As noted above, the disease is unpredictable. After a serious bout of one of the infections (e.g., PCP), a PWA may enter a long phase in which he or she feels well, has good energy, and lives a normal life. Some people then return to full-time employment at their previous jobs, and some volunteer their time with ASOs. Again, federal law protects these workers. They may not be discriminated against because they have AIDS. However, this law does not prevent some employers from firing their employees if they suspect they are ill. You may have to assist your clients in returning to or maintaining their jobs. If you plan to work in the field of HIV, you should begin to learn the process for filing discrimination complaints.

Social Services

Persons living with AIDS may need a range of social services such as transportation, counseling, assistance with meals, legal aid, and companionship. These services may be available through a variety of sources, but you may need to help your clients access them. Again, the best first step is to contact your local AIDS organization and ask for assistance. They may provide a caseworker, a buddy program, counseling, support groups, and so on. Or you may need to find those services from a variety of sources. The nature and extent of needed services will depend on how capable and/or how ill your client is.

An excellent example of a social service program is the Food and Friends program, which operates in Washington, DC. Those PWAs who are too ill to shop and cook for themselves, who cannot leave their apartments or houses, and who have no one to care for them can call Food and Friends, which will deliver nutritious, abundant meals directly to the PWA. Many PWAs, once they are functioning well once again, become volunteers in the program, helping to prepare and deliver meals. In this way, the cost of the program is kept to a minimum and people invest in caring for one another.

WORKING WITH PWAS

Working with persons with HIV and AIDS will be both challenging and rewarding. Some are very angry that they are ill and vent their anger on anyone who comes close. Others may focus on being as healthy as possible, including maintaining strong mental health. Others, following the stages of dying outlined years ago by Elisabeth Kubler-Ross, will react differently at different times.

Working with PWAs today is much different from what it was like a few years ago because the stigma of the disease is lower, there are many more organizations that provide help, we know more about the illness, people are living longer, and there are vastly more competent, knowledgeable people who can provide assistance.

AIDS Agencies

Starting with the Gay Men’s Health Crisis in New York and the Shanti Project in San Francisco in the early 1980s, nonprofit ASOs were created as the need arose. They are funded in part by local, state, and federal government dollars, but most receive the majority of their income from private donations, fund-raisers, and grants. Most have major fund-raising events annually. A common one is a pledge walk of some sort, such as the Walk for Life in Providence. Usually held on the first Sunday of June, The Walk is the major annual fund-raiser for the AIDS Project of RI. Individuals who plan to walk ask their friends and relatives to sponsor them, usually by donating a specific amount for each of the ten kilometers of the walk. The proceeds, regularly around $200,000, are sometimes shared with other, smaller ASOs in the area. Such walks are festive occasions with balloons, politicians, food, entertainment, and good cheer. In recent years bikes rides have become popular, with rides now taking place between Boston and New York, between San Francisco and Los Angeles, and between other cities. Local media provide good coverage of these events.

Self-Help Groups

Self-help groups use peer-helper models to provide emotional support. These groups lower the cost of caring for people with HIV and AIDS because they are low- or no-cost organizations. Groups have been formed for people living with HIV and AIDS, partners of PWAs, and the “worried well”—groups of individuals who attempt to deal with the emotions of being HIV negative while so many of their friends are sick or dead. Larger cities have separate groups for men and women and for people who speak various languages.

Volunteers as Important Resources

All ASOs rely heavily on volunteers. The best examples are probably the buddy programs. Most were started in the early 1980s with the (accurate) belief that the human service needs resulting from the AIDS crisis would far exceed the capability of the system to respond. They are also evidence that, for a long time, the system refused to respond and did not provide necessary services. And they are continuing testimony to the American spirit of caring and volunteerism.

The Buddy Program at AIDS Project RI is a good example. Started in 1985 by a small group of volunteers, it now provides training and support for more than 150 buddies. Buddies undergo a forty-hour training program that teaches them about AIDS and how to work effectively with HIV-positive people. They then may be assigned a buddy, that is, a person living with AIDS who has requested a buddy. Each pair negotiates its own terms, but commonly the relationship provides emotional support and companionship plus whatever tangible assistance is needed. The buddy may, for example, provide transportation, pick up prescriptions from a pharmacy, arrange for hospitalization or visits to the doctor, see that the PWA is eating properly, or negotiate with landlords. Buddy programs have provided emotional support and help for thousands of people who, without them, would have died sooner and been much more isolated. Being a buddy can be emotionally wrenching, so buddy support groups are common. Groups of buddies meet biweekly or monthly to provide one another with necessary emotional support and periodically consult ASO staff for support and direction.

Special Needs and Skills of Workers

Human service workers who work with people living with HIV and AIDS must have the customary set of skills, knowledge, and attitudes that all human service workers should have. They should go beyond these, however. First, always keep in mind that these people are living, not dying. This fact is very important for you to remember. However, courses about death and dying and experience with people who are terminally ill are useful. Second, a solid understanding of the entire human service system and how to make it respond is essential, since PWAs nearly always need a broad array of services. If not dealing directly with all involved government and nonprofit agencies and organizations, you will at least be making referrals, so you must know the entire system. Third, advocacy skills are critical. You may have to act on behalf of your client, who, for whatever reasons, may be unable to do so for him- or herself. Fourth, and very important, you must be aware of cultural differences.

Your clients may belong to cultural groups other than your own. Issues in HIV education vary among different populations, as do reactions to HIV and AIDS. Part of the reason that the death rates from AIDS among minorities seem to be higher than that of whites is that members of minority groups have less access to appropriate medical care and, even if they have access, may choose not to fully avail themselves of the care.

CURRENT ISSUES

Some issues have been with us nearly since the beginning of the epidemic. For example, questions and concerns about testing for the virus arose as soon as a test was available. Other issues, such as insurance coverage, arose later. Pertinent issues will change over time, and you must read widely so that you will know what the issues are at any given time. Unlike the early days of the 1980s, when we were just beginning to notice AIDS, the media now cover the topic extensively and in a balanced way. It should not be difficult for you to stay informed of how the illness and treatments are changing.

Mandatory HIV Antibody Testing

Some Americans believe that one way to stop the spread of HIV is to test everyone, or, if not all people, at least selected groups such as gay men, drug users, and people applying for marriage licenses. Setting aside civil rights questions for the moment, the issues around testing everyone concern the costs and benefits, how to account for the three- to six-month latency period between exposure and the development of the antibody response, and the psychological preparation needed for people to receive test results. Is it more effective to spend scarce HIV dollars on HIV education and research than on testing? Which has the most probability of slowing the spread of the epidemic? At the present time, mandatory testing affects very few people; people entering and serving in the military are a good example of a population that is regularly tested. In addition, a 1997 New York law requires the testing of all newborns.

Mandatory Reporting of Sex Partners

It has been community health policy and practice for many years that individuals testing positive for gonorrhea or syphilis provide the names of their recent sex partners. This has not been true for people testing positive for HIV, partly because of intense pressure from AIDS activist groups who feared that individual civil rights would be violated and partly from concern of public policy officials that even fewer people would choose to be tested if they had to provide the names of partners or if their names were reported to a federal agency. All states maintain registries of diagnosed cases. In 1997, twenty-six states required doctors to report the names of HIV-positive people to confidential state registries, but the debate continues. In 1997, the prestigious New England Journal of Medicine came out in favor of mandatory reporting at the federal level, so policies will continue to change.

Deciding Whether or Not to Be Tested

People who have engaged in high-risk behaviors such as unprotected sex and sharing needles must decide whether they should be tested for the virus. This is not an easy decision to make. The strongest argument for being tested is that, if the test results are positive, a person’s health can be monitored and, if changes occur, action can be taken. The argument against being tested is that the news of a positive result can seem to be a death sentence. Some individuals know that they could not cope with such information. The best source of counseling about the testing issue is probably an AIDS organization.

Health Insurance Coverage

As we are painfully aware, health insurance coverage in the United States varies. Many people are insured through their places of employment while others are not. Even people who are insured may find that their insurance is not adequate after a diagnosis of AIDS.

People who are not insured must rely on government programs, particularly Medicaid, the program that provides health care coverage for indigent people. Although Medicaid provides basic care, it does not cover many additional services that PWAs may want or need. Coverage varies from state to state.

Medications

Because AIDS is fatal, those who contract it are intensely concerned about which medications are available to them and, perhaps even more so, about the progress of AIDS research and the speed with which the Food and Drug Administration (FDA) approves new drugs. There are always rumors, and sometimes facts, about experimental treatments that are available in other countries but not in the United States. Because of protests in the early 1990s by AIDS activist groups such AIDS Coalition to Unleash Power (ACT UP), the speed with which drug trials are conducted and new drugs approved by the FDA has increased.

Strain on the U.S. Health Care System

Treatment of HIV is expensive because people who have it may need a variety of intensive interventions over many years, many of them requiring hospitalization. Recently, however, the total amount paid by insurance companies for inpatient care has been declining. The cost of the much less expensive outpatient care is increasing. The common medications are very expensive, with the average monthly cost of AZT and ddI plus one of the protease inhibitors running from $1,000 to $3,000.

People with HIV/AIDS can suddenly become very ill with life-threatening infections. After hospitalization and appropriate medication, they may return to their lives for months or years without further enormous expense, or they may suffer a series of costly hospitalizations, one right after another. The course of the disease is unpredictable. What is predictable is the fact that treatment will be quite expensive. Current estimates are that each case of AIDS costs roughly $100,000.

Questions about health care always must revolve around how much value we place on a human life. For some, no expense is too great. For others, particularly when the causal factor is AIDS, nearly any cost is too great. The issue of cost will only escalate in the future because people with HIV/AIDS are living longer.

Who Is Responsible for AIDS?

While the U.S. Constitution is thought to protect all Americans, those of us in human services know well that discrimination continues in our society. Examples include the Rodney King beating in Los Angeles in 1992, the passage of Amendment 2 by Colorado voters in November 1992, and the enormous public reaction to President Clinton’s 1993 efforts to allow openly gay men and lesbians into the military.

In the example of AIDS, this discrimination manifests itself as a form of “blaming the victim.” According to this way of thinking, people who contract HIV do so because they violate society’s norms by either using needle drugs or engaging in illicit or socially unaccepted (gay, extramarital, or premarital) sex. Some groups in our society then find it easy to adopt the position that people bring HIV on themselves. Since individuals are responsible for their own behaviors, some of which result in contracting HIV, these individuals are ultimately responsible themselves for becoming ill. Thus, society should have no responsibility toward them. The rule then would seem to be this: Either obey society’s rules, or we don’t care if you sicken and die. Taken to its logical extreme, this should mean that we refuse to provide treatment for victims of skin cancer who had spent time trying to get a tan, for victims of lung cancer who had smoked, for victims of cirrhosis who were heavy drinkers, and so on. So, we essentially would have groups of disposable people.

When translated into policy, this could mean that people with HIV and AIDS should be openly discriminated against in housing or employment or public accommodation. It could mean reductions in access to health care benefits. It could mean the stripping of civil liberties such as the right to privacy. People with HIV and AIDS could find that their health status is public information. Because the disease initially affected gay men almost exclusively, public attitudes toward homosexuality are closely tied to antipathy toward PWAs.

Some segments of American society would immediately stop all HIV education, relying instead on exhortations that there be no sex except between legally married heterosexual couples. However noble or ideal that goal might seem to be, it ignores the data on sexual activity in America.

As long as the HIV epidemic continues, these issues will be debated. As a human service worker, you will find yourself in an important role. You could be asked to provide expert testimony in court. You may be interviewed by people from the media. At the very least, you are a voter who should be well informed about the issues.

CONCLUSION

We reiterate that you will almost certainly work with people living with HIV and AIDS if you become a human service worker. This work can be richly rewarding, as can any human service work. But, because it involves life-threatening illness and death, it can be debilitating as well. Only you can decide whether specializing in this area would be a good choice for you.

We urge you to consider a career working in one of the many kinds of AIDS organizations. To make such a decision, you must carefully examine your attitudes toward sexual orientation, toward members of racial and ethnic minority groups, and toward people who use needles. If you are disapproving or squeamish, either work through your issues or select another area in which to specialize. Do not enter this line of work as a means for improving your attitudes toward gay people, members of minority groups, or drug users, or for proselytizing or preaching. People with HIV bring unique problems. They need your help and support. It would be unethical for you to use them for your own purposes.

To help you decide whether HIV work would be a good choice for you, begin to volunteer in a setting that provides services to people living with HIV and AIDS. Answer the telephone, raise money through phone-a-thons or a Walk for Life or other means, stuff envelopes, staff the hotline, or become a buddy. Interview people who work in such agencies. Get to know other volunteers. You can gain valuable additional experience by doing a field placement or internship working with people living with HIV and AIDS. Even if working with people living with AIDS is not your preference, you will undoubtedly work with people who are HIV positive, so you must learn as much as you can about the disease and the needs of people who have it.