Czar Talk: An interview with Patsy Fleming Chris Tebbetts BURLINGTON -- The following is excerpted from a conversation with Patsy Fleming, National AIDS Pol- icy Coordinator for the Clinton Ad- ministration, who was in Burlington to speak at the Vermont CARES an- nual dinner on March 25. She spoke at length about national and local issues, funding concerns, the current administration, the needs of gay and youth communities, and her part in it all. On the challenges to those living with HIV in a rural area: People are spread out across the state, not concentrated, not able to go to support groups, not able to get to a doctor who really understands, unless they're in Burlington or un- less they go across the border to New Hampshire There is dis- crimination here, harassment Everybody knows you; it's like one big small town. One of the things that I think is es- sential is that we look at the kind of funding that goes to a state like Vermont which has so many peo- ple spread so thinly across the state that it's difficult for them to access services. Earlier today, I was talking to some of the clients of Vermont CARES about how difficult it is for them to get to their clinic. Because they live so far away they have to drive up to two hours to get to the nearest facility where they can get the care they need. Sometimes two or three times a week they have to make this trip. I don't know the solu- tion to that but it's certainly some- thing I'm taking back to Washington as a big issue for us to look at. On joining the Clinton administra- tion: I started as interim AIDS Co- ordinator the day after Chris Gebbe resigned and then the President ap- pointed me permanently to the job in November, just two days before the election. Little did I know what I would be facing. Two days before the election and I agreed to take the job! (And? ) Idon‘t regret it. On the administration's dedication to HIV/A. )S issues: I think I can begin by saying that I bring the fact that the President of the United States cares about Ver- mont, and that's why I'm here. I'm here to represent him. And I'm bringing a message of hope..While I realize that hope is good, and it's im- portant, it's certainly not enough, because we have to fight this epi- demic. We have to fight it with re- sources and services for people who need it, people who are sick, people who are at risk, people who are in- fected and will become sick, and the families and caretakers and lovers of loved ones of those who are sick. On HIV research and treatment: The federal government has been conducting research on the virus it- self, and on drugs to treat people who have it, for many years. And even though there is no cure yet -- and it is our goal to come up with a cure and a vaccine -— there are many drugs that are helping people to live longer and healthier lives. There are drugs that can be taken to prevent opportunistic infections, like pneu- mocystis carinii pneumonia (PCP) and to treat it should someone come down with it. There are also drugs to treat the underlying HIV infection - - not to cure it but to damp it down, to make it less intense. On national fimding issues: The research funding has gone up each year for AIDS research and right now in Washington budgets are being considered. The Congress is working on a rescission bill. We are very fortunate that the rescis- sions that were proposed in the House on prevention and on (the) Ryan White (Care Act) were elim- inated so that l995 funding will continue for those programs at the current level. The Senate did not try to cut them. On HOPWA ’( Housing Opportunities for People With AIDS): Unfortunately, though, the housing program for people with AIDS, known as HOPWA, has been cut all the way back for FY1995 in the House. The Sen- ate however did not cut it all, so when it goes to conference the House and Senate (will) come together to work on a final bill. There will be some com- promise made and there will be a cut but there won't be an elimination as the House has proposed. HOPWA is a program that is sorely needed in Ver- mont and I understand that Vermont is in the process of applying for HOP- WA funds from the Department of Housing and Urban Development in Washington. One of the things I heard today from people with AIDS and HIV in Vermont is that housing is a major problem, in addition to the wide- spread nature of the epidemic around the state. People who have this illness need a stable, comfortable place to live, so I am hoping that HOPWA fund- ing ends up here in Vermont. On fimding to Vermont: HOPWA grants are not based on concentration of people but rather-on [oth- er] numbers, and I don't think that will be a factor (for Vermont). But I did look at a statistic that is a factor. Vermont estimates that the number of in- fected people here is 1 out of every 500. That compares with the U.S. rate which is 1 out of every 250 people. Funds are prorated on the basis of need so that would have a bearing as to how much (HOPWA)’money comes into the state. But every state gets Title II funding under (the) Ryan White (Care ‘ Act) and I'm hoping that that share will go up as we go through the re- appropriation process. On HI V prevention and behavior change: There are federally funded projects that have come up with some answers and some programs that seem to work. The issue though is: how long? You have to reinforce behavior change over time. One of the hardest things to do is to change sexual behavior or to change drug using behavior. Think about how hard it is to stop smoking or to change your diet, and then think about how hard it is to change your sexual practices, and then to change them for the rest of your life. You have to reach young people where they are. It may not be talking about HIV; it may be talking about something else. If they don't have a place to live, that's going to be the most important thing for them. If they're prac- ticing survival sex, they need resources, they need support for their lives. And then once they're stabilized and have those things taken care of, then you can talk to them about HIV. But you can't just barge right in and start talking about it if they have other needs that are more pressing. On the HIV infection rate: The number of people becoming infected each year is about 40,000.and it has been at about 40,000 for five years. It's down from earlier in the epi- demic but it's plateaued. But what we're seeing is a sharp increase in the number of women who are becoming infected, and people of color, but mainly women. On youth issues: One out of every four new infections is among people under 20. One out of every two new infections is among people under 25, and that's a really shocking statistic. Young people are getting infected more and more. These young people are dying in the years in which they are most productive. It re- inforces the statistics that I cited. The age of infection is quite young be- cause it takes about ten years on average for AIDS to develop after HIV in- fects a person. On the need for services to the HIV negative: I heard about a young man who went to a clinic and said he was positive be- cause he felt left out of the young gay world and there's so much attention focused on this HI-V-positivity and it's an incredibly sad situation. Some clin- ics now, because they are short of funds, are testing people before they will provide services. ._ On gay men and homophobia: What's happening is that the epidemic is slowing among gay men. Gay men still account for the largest number of people who are infected but the rate of infection is level. That means that they're still getting infected, especially young gay men and gay men of color. Young gay men seem to be denying the possibility that they will get AIDS and on the other hand are thinking that it's inevitable. Now that's kind of a schizophrenic approach to it (but) it's true for many young gay men. There's another problem we face and that is homophobia. Homophobia is a very destructive attitude and young gay men internalize what society tells them about themselves. It leads them to have low self-esteem and not to val- ue themselves enough to try to protect themselves. One of my sons is gay. I care very much about young gay men. I care about everyone in this epidemic. 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