AIDS
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some without. Some medications have to be refrigerated."
"The cost of drugs is It's like having to buy a brand new car every year and paying for it with cash," said Brooks.
"People wanted a cure, and protease inhibitors made it so in their heads," said Jackie Figler, executive director of Violet's Cupboard in Akron. “
Dr. Michael Lederman, principal investigator at the AIDS Clinical Trials Unit at University Hospitals of Cleveland, said, "Research is now indicating that over 50% of patients on antiretrovirals may fail treatment after one year."
A changing PWA population
The demographics of people with AIDS, or PWAs, has made a major shift from the days when there was a predominance of gay, white men.
"There are many straight women of childbearing age who are getting AIDS, and many blacks-both straight and gay,'
"The drug therapies have lulled people to sleep and given them a false sense of security."
said Figler. "But gay people with AIDS are still coming in all the time.”
""
Starn said, "In Lucas County, most of the new cases are between the ages of 12 and 25. Teenagers think they can take pills and they will be fine, so they don't have to worry about AIDS. Almost all [80%] of the new cases we see are connected to sexual activity, both gay and heterosexual."
David's House director of education Mary Jay said, "A very high percentage of new HIV infections are in teens, and 86% of those are female."
Many of the newly-infected PWAs already had severe challenges before they became infected with HIV.
"Some of our clients come in with AIDS, said Susan Butler of Caracole, Inc. in Cincinnati, "but HIV/AIDS is way down on their list of issues they have to deal with. They are bringing with them addiction problems and chronic mental illness."
Adapted programs
Violet's Cupboard has had to adjust its programs to fit new clients, Figler said.
"Take the buddy system, for example. Our new clients need a very different kind of buddy-someone who understands substance abuse, medication, and mental illness," she said.
"When the medical community came forth with drugs that prolonged life, we realized we really need to reevaluate our services," said Brooks. "Now we offer back-to-work programs, how to apply for and manage Social Security, how to work part time and not jeopardize their Social Security benefits."
"We decided to add two minority outreach persons and a youth outreach person. We now have a men of color risk prevention specialist. We have doubled our education department," said Brooks.
Teen education
"AIDS is spreading because we are not being honest with our kids," said Laura Mintz of the AIDS Service Connection in Columbus. "When we teach abstinence as the only way to prevent AIDS, and that sex is only appropriate in marriage, it mystifies sex and it doesn't have an honest basis. Sexuality is all around us. We are all sexual people."
"Our society shows a lack of respect for young people because we believe they can't make decisions before they are 18," said Mintz.
Has the public lost interest in AIDS?
"The drug therapies have lulled people to sleep and given them a false sense of security," said Jay. "When some people hear that AIDS deaths are down, they lose interest or concern."
However, said Cleveland Lesbian-Gay Center health outreach coordinator Bob Bucklew, "the absence of a crisis atmosphere alarms the people working in AIDS. They are afraid the money is going to dry up. But the truth is AIDS is not a crisis in the gay community any more. My theory is that the community has been in a state of crisis for the past 20 years, and we can't stay in it forever. HIV/AIDS may be in our community for generations, and there will be deaths. We need to come to grips with that."
Whether AIDS is a crisis in the GLBT community or not, PWAs need as much, if not more, support. Butler said, "People with AIDS need more support now because they are living disabled longer. They got ready to die, they made their peace, and now they are experiencing a Lazarus syndrome, not wanting to get involved in relationships again. The problem now is harder."
The 'ungaying' of AIDS
"Almost 20 years later nobody got over the gay thing," Bucklew said. "Recently there has been a purposeful 'ungaying' of AIDS by bureaucrats and politicians, partly because they are uncomfortable talking about gay sex and partly because they have a fatalistic attitude about it. It is almost as if they are saying 'you [gay people] had your shot at it, you had your chance, you should be taking care of yourselves now.'
"Our population is still the most impacted by AIDS, and only 8% of prevention money coming into the area is for the gay community. You know what that's about," Bucklew added.
Battles for funding
"AIDS is a disease of poverty," said Brooks. "In 1998, 74% of the people we serve make less than $10,000 annually.
And we have to compete with other illnesses for funding. We all need more money."
Bucklew said, "Not all of our battles our over. We have to decide whether the medical system can continue to support people with AIDS. Do we have the political will to make that commitment?"
"For example," Bucklew added, "the AIDS drug assistance program is run by the Ohio Department of Health, and it helps people who are not eligible for Medicaid, or who don't have adequate private insurance. Insufficient funds have been set aside for this program for the next fiscal year. We need to make sure the monies are put in. We can't keep fighting these battles every two years."
"It is tougher to get funding," Figler said. "Agencies need to know how to diversify their funding base. Our biggest challenge now is to keep AIDS agencies going. The service needs today are more complicated. Our clients are living longer, but not better. And AIDS agencies across the nation are closing."
A changing virus
How has the face of AIDS changed? The virus itself has changed. A textbook example of evolution by natural selection, HIV has mutated, forming at least ten different subtypes and developing strains resistant to the most effective drugs science has yet to offer. Unless researchers can develop new drugs that work against the virus, there will soon be no effective treatment for AIDS once again.
The populations that HIV infects have changed. No longer restricted to gay white men and a few other high-risk groups, HIV now as a matter of course infects women, heterosexuals, African Americans and teenagers, among many others, broadening its selection of hosts.
What remains the same is America's reluctance to face the reality of the disease, from its first appearance 20 years ago to the limits of protease inhibitors today. ✔
December 17 1999 GAY PEOPLE'S CHRONICLE
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