Facing Their Fears

Around April 1, California marked its 100,000th case of AIDS. MARK SENAK, 41, director of policy and planning at Aids Project Los Angeles, which helps treat about half of all people with AIDS in Los Angeles County, discussed the changes in the course of the disease with JOSEPH HANANIA.

QUESTION: How have protease inhibitors changed the face of AIDS?

ANSWER: In our recent survey of 3,000 clients, the number reporting extreme health problems dropped by half from a year ago, to 11%. Those reporting extreme depression similarly have dropped by half. Not all clients, however, have equal access to health care. Thus, for example, the percentage of African Americans who report improvement has changed only minimally.

Q: Why?

A: That community generally has less trust of the health care system. A survey of 1,000 African American churchgoers conducted by the University of North Carolina at Chapel Hill showed that a third of all those polled think AIDS was created in a lab and is a form of genocide aimed at them. Another third was not sure. This distrust goes all the way back to federal experiments with syphilis at Tuskegee [Ala.], in which infected African Americans were deliberately left untreated.

Q: How does this perception translate behaviorally?

A: Many African Americans discover their infection at a later stage, often using inner-city emergency rooms as a primary caregiver. The most effective treatment for AIDS, however, is early intervention, preferably in a clinic or doctor’s office.

Q: How about Latinos?

A: They constitute the fastest-growing segment in the Los Angeles County AIDS population. They didn’t hear early preventive messages because they seemingly didn’t belong to a high-risk group.

Latinos also have the lowest access to new drug therapies. In a recent APLA survey, 54% of HIV-positive Latinos said they were on combination therapies, versus 57% of African Americans and 74% of Caucasians.

Similarly, whereas 3% of Caucasians said they had no knowledge of protease inhibitors, 18% of Latinos did not. We also found that many undocumented Latinos are afraid of utilizing the health care system for fear of being turned in to the [Immigration and Naturalization Service].

Q: And Asian Americans?

A: AIDS infects a significantly smaller percentage of them than the population at large. However, the cause of AIDS infection is determined by behavioral factors, including sexual behavior. It is not determined by one’s risk group.

Q: The number of women with AIDS has doubled nationally over the last two years.

A: Yes, because of a continuing ignorance about the disease among women. Thus, whereas only 3% of Caucasian males report no knowledge of protease inhibitors, nearly a quarter of all women don’t know about them. At the same time, women are less insured than are men, and have lower earnings. This translates into less health care access.

Q: So how are white males doing?

A: They have the best access to new treatments because they are the most heavily insured. Individuals with Medicaid have slightly less access, but still largely fall in the safety net. Those with no insurance, public or private, including the undocumented, have the least access.

Q: Then are insured individuals largely home free?

A: Not necessarily. Many diagnosed with AIDS who were waiting to die are now ready to go back to work. Because they have been out for so long, however, they are having a hard time reentering the labor force. In addition, since they must spend up to $15,000 a year on medications, with costs largely borne by an employer’s insurance, many employers are reluctant to hire them. In addition, the new drugs will still fail to help many.

Q: How do federal and state programs figure into the equation?

A: On the federal level, there is a block grant to the states, called the AIDS Drug Assistance Program, which provides subsidies for drugs. President Clinton has sought no increase in ADAP funding this year. Gov. [Pete] Wilson has proposed a large increase in state funding. The catch here is that the counties are funding much of the bill. But Los Angeles County is short on funds. The threat is that life-saving drugs will be less available among the poor.

Q: So if we don’t change course, five years from now, the HIV “class system” will be even more pronounced?

A: Yes. Past policies were as effective as they could be, given the knowledge and resources we had. Now, however, we must chart out new policies, with increased awareness and access by all communities. The alternative is to do nothing as the disease increasingly targets those most at risk.