Public Health Magazine: Spring 1996, Vol.4, No.1
AIDS in the Age of Incongruities

By Karen Baar

In one investigation, researchers interviewed people with HIV/AIDS to determine how they feel about the care they receive. Says Peter Messeri, Ph.D., who heads the Ryan White evaluation with Cheryl Healton, Dr.P.H., "For a wide range of medical services, between 60 and 75 percent of people say they are very satisfied."

Many study subjects were indigent patients who had been on welfare and had a history of drug use. In addition, their past experiences with medical care typically included long waits at clinics and numerous emergency room visits. It is sadly ironic, according to Messeri, that because they are infected with HIV, many study participants are now getting much better services than uninfected people in similar circumstances. "When patients have HIV and go into Ryan White programs, they are in fact getting improved care. These programs have gotten services to people who never had them before."

The gap in level of satisfaction is a bit wider-but still only about 10 percent-when looking at housing, legal, financial and employment services. While people are generally more dissatisfied with social services, overall, private and public services are much more similar than might be expected. Messeri speculates that this is because HIV/AIDS services are funded through programs that direct money specifically to treating HIV. "With services for other health conditions or for well-patient care, the situation might well be different. The poor person who gets courteous and high quality service from an HIV-care provider might not get the same treatment were he or she suffering from another disease."

In addition, the high quality of HIV/AIDS services owes much to the nature of the Ryan White agencies' caregivers, who also have been evaluated in this series of studies. The people caring for HIV patients are genuinely committed to what they do, and they tend to treat each client as a real person, rather than as an object, Messeri explains.

Good With the Bad

Unfortunately, there's some bad news too. Although many necessary treatment services are now in place, prevention efforts have been weakened. Findings from a 25-year-long study of health, drug use, and-beginning in 1987-HIV prevalence among African-American men and women, conducted by Ann Brunswick, Ph.D., offers some insights. Using self reported information from personal interviews, and results from serologic assays for HIV-both conducted in the home-Brunswick and her colleagues are tracking the current status and changing prevalence of HIV and the behaviors that lead to it. One alarming finding: over 80 percent of HIV-positive men didn't know their status. (Because the study is "research blind," CSPH researchers are unable to give the subjects the results of their blood tests. However, through referrals and financial incentives, researchers strongly encourage subjects to get tested on their own.)

In addition, over 90 percent of these same subjects who were unaware of their HIV status would want their families to know if they were HIV positive. It's not that these "unaware infected men," as Brunswick calls them, do not get medical care; two-thirds of them have seen a doctor in the last 6-12 months. Nor do they have fewer symptoms than the men who are aware of their HIV status. "The compelling issue that these data suggest to me is that their doctors are not making adequate referrals for these men to go and get the test," says Brunswick. "The situation is mystifying. We know that African American men are at very high risk for HIV/AIDS disease. Why wouldn't a doctor who is serving an at-risk group see that patients in this group be tested? This is something the medical profession should look at."

Adolescent Sexuality

The evaluation of teen services reveals further gaps. Once a teen is HIV positive, the doors to care are open. But preventive services are woefully lacking. "It's a case of 'closing the barn door after the horses are gone,'" says Associate Dean Cheryl Healton, director of the Center for Applied Public Health. To some extent, this is due to the sensitive issues surrounding adolescents and sex. "The cultural norms around sexuality, and the way they express themselves in institutions like the school and the family, inhibit our response to adolescents," says Healton. "Imagine a public health threat to adolescents that had the consequences of HIV but was not drug related or transmitted sexually. The country would stop and take notice ... it would be the center of a major national campaign."

Judy Lipshutz, coordinator of education services for the Community Health and Education Program, agrees. "The level of HIV and sex education in the schools is horrendous. There's now a new policy [prohibiting] condom demonstrations. The Board of Education and some policy makers and politicians are ... not acting ethically in terms of what kids need." According to Lipshutz, the high-school level HIV curriculum has yet to be completed, and more prevention and case management programs are desperately needed.

For teens, though, access to services is just one piece of the puzzle. "In our discussions in poor urban neighborhoods, teenage women tell us that they are more concerned with the immediate problems of health and safety, with violence, drugs and jobs than with AIDS," points out CSPH's Nancy Van Devanter, Dr. P.H., co-principal investigator of Project Wings, an HIV prevention program.

Impact of Neighborhood Collapse

his statement goes to the heart of the HIV/AIDS care dilemma. Those who are infected are frequently disenfranchised members of society, troubled in so many other ways that providing good health care just scratches the surface. "You can't look at the problem of HIV/AIDS without looking at everything else," says Mindy Fullilove, M.D., co-director of the Harlem Household Survey of the Harlem Center for Health Promotion and Disease Prevention, a center co-sponsored by CSPH and Harlem Hospital.

Through a survey of 700 Central Harlem residents, Fullilove and her colleagues have been studying the collapse of the inner city in the New York metropolitan area and its association with the spread of HIV/AIDS in the region. "About 30 percent of the housing in central Harlem was destroyed between 1960 and 1990, leading to a hazardous and degraded environment," she says.

The destruction of so much housing severely weakens a neighborhood, both in terms of social networks-how people watch out for each other- and its connection to the larger society. "Much of the control of sexuality and violence has to do with intact, functional social networks," Fullilove says, adding that when a large part of a community's structural environment is destroyed, "there is a tremendous surge of alienation, hostility, and violent, self-destructive behavior." Furthermore, homelessness and displacement are strongly linked with risk behaviors associated with HIV/AIDS.

Women and AIDS

When considering the disenfranchised, gender issues can't be ignored. "Historically, the health concerns of women have taken a back seat, and AIDS has been no different," Healton says. "For the first ten years, until the fourth international AIDS meeting, not a single paper was oriented solely toward women." As a result of this neglect, the constellation of symptoms usually seen in HIV positive women-which is different from what men suffer-was only recognized relatively recently.

CDC patient education materials developed at CSPH showed early indications of effectively helping HIV-positive pregnant women make well informed decisions about their health care.

In a recent report to the federal Agency for Health Care Policy and Research, Eugene Litwak, Ph.D., and his colleagues Sonia Baker, Ph.D., and Myriam Sudit, Ph.D., examined the needs of HIV-positive women. Like Healton, they identified the development of needle exchange programs, reduction of substance abuse behaviors, and further analysis and promotion of safe sex practices, as the highest priorities for curtailing the spread of HIV infection.

"It seems paradoxical that funding agencies have paid little attention to counseling HIV-positive women on safe sex, considering that this is one of the chief means of spreading the AIDS infections," Dr. Litwak asserts.

Women have traditionally been viewed as either "sex workers who were lascivious spreaders of the illness, or as perinatal harborers," Healton says. It is in the latter realm where some of today's most burning ethical issues surface. A recent clinical trial showed that by taking the drug AZT, pregnant HIV-positive women reduced transmission of the virus to their babies by 67 percent. This finding raises the specter of mandatory testing for pregnant women, something which many women's advocates actively oppose.

According to Healton, those who support mandatory testing "have the notion that the woman is not capable of deciding what is best for her family, and that having her HIV status known, and the potential HIV status of her child known, is inherently good." However, such logic unravels in the face of serious social and legal considerations that come to light after disclosure of HIV status. For example, Healton cites recent research showing that in a hypothetical situation, neonatologists and perinatologists would withhold treatment from an HIV-infected infant. "Women's concerns about where labeling might lead are very real," she concludes.

Preventive health education is key to helping young people make informed decisions about their health care. Physical exams, HIV counseling and testing, and condom distribution are all part of a comprehensive preventive care plan.

Mother and Child

he case for unblinded screening and treatment of newborns does not yet outweigh the privacy of the mother, in the view of CSPH professor and ethicist Ronald Bayer, Ph.D., principal investigator of the ethics, legal, and policy core of the HIV Center for Clinical and Behavioral Studies.

Bayer explains: "The problem begins with the principle that the state has a special responsibility to protect the medical interests of the child, even if that means overriding the parent's wishes. This principle has been reflected in, for example, the well-established practice of providing blood transfusions for the children of Jehovah's Witnesses despite parental objections.

"The opposition holds to the principle that no woman should ever be compelled to undergo testing for HIV. Since the testing of newborns must entail mandatory infection in the mothers, the proposal has been deemed unacceptable," he says.

As Bayer sees it, "The reality is that despite advances in the management of HIV disease, early treatment could do little to affect the life expectancy of HIV-infected children. If it becomes possible to save the lives of such children or to extend them dramatically, the weight of the ethical argument, as well as the political picture, would undoubtedly change."

Issues of privacy, consent, and access to care are not unique to HIV/AIDS. They emerged in the context of treating other infectious illnesses, such as tuberculosis and sexually transmitted diseases. But HIV/AIDS is a lethal infection, so these concerns take on heightened significance. And because HIV/AIDS often afflicts the vulnerable and disenfranchised in our society, it raises other powerful questions too. "The biggest moral and ethical problem is that we are not dealing with the real sources of HIV/AIDS-like poverty and the abandonment of poor people in the inner city-which lead directly to disease," says Mindy Fullilove. "If we don't address those, we haven't begun to address the issue."

Karen Baar, M.P.H., is a freelance writer living in Woodbridge, Connecticut who frequently writes on healthcare and related issues for magazines and newspapers, including The New York Times, American Health, and Family Circle. Last year, Baar won a Media Award from Planned Parenthood of Connecticut for her article, "Nine Months to Life."