Statements of AIDS Patients (1983)

HIV/AIDS confronted Americans in the 1980s. The disease was first associated with gay men (it was initially called Gay-Related Immune Disease, or GRID) and AIDS sufferers fought for recognition of the disease’s magnitude, petitioned for research funds, and battled against popular stigma associated with the disease.

Mrs. BOXER. I wanted to ask the panel, if anyone can address this, if you feel that you are given enough information about the disease, and then the second part, do you think that the gay communities throughout the country, from your knowledge, are being given enough information so that they can perhaps make some changes in their life to try and avoid it …

Mr. LYON. There is no new information. Every bit of information that has come out has been very widely disseminated. People are hungry for information. The city government, the public health officials, the city of San Francisco have, as far as I am concerned, gone overboard and made information available. Public forums have been held. Many of the health care facilities have asked patients and health care officials to come and explain, “tell us everything you know, give us the information in order that we can dispel many of the fears.”

The main problem is there is no new information. It is a rehash over and over and over again of the same information.

Mr. FERRARA. I agree with Mr. Lyon. I believe the problem is more misinformation than lack of information.

I do my best to do as much as I can to dispel misconceptions about the disease. People don’t have to be afraid to be in the same room with us, people don’t have to be afraid to swim in the same swimming pool. I believe that gay organizations across the country should be given more information concerning guidelines that can be disseminated to the gay community in terms of—in terms of ways that gay men can protect themselves from the disease, rather than causing the paranoia and hysteria that the information that has been disseminated so far caused.

Mrs. BOXER. Do I have time for one last question? Do you find that you have a support system out in your communities to help you get through this experience? . . .

Mr. CALLEN. I cofounded a support group called Gay Men With AIDS, which is run by those of us gay men who have been diagnosed with the syndrome. It has made the difference for me. It is really what relieved some of the fear on a day-to-day basis. I saw other people fighting for their lives. We share information, we talk about doctors, hospitals, and treatments. For me AIDS was another closet, was another coming out.

When I was first diagnosed there wasn’t the terrible stigma that is attached to being diagnosed with AIDS now. So it never occurred to me not to identify myself to my friends as having the disease. But since that time, because of a lot of the misinformation and often hysterical coverage in the media, I know a number of people who refuse to identify themselves to their community, even to their family, as having the syndrome, because there is such tremendous stigma and isolation attached to it. …

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Mr. CRAIG. I have a couple of questions, I think reflective of how the gay community is responding. You mentioned earlier, some fears and concerns on your part and the community’s part. Has there been, or is there now, because of the fear of this disease, an exodus if you will, from the areas or the communities Mr. McCandless talked about, New York and San Francisco specifically, where the larger number of cases are reported. In places where it seems to be relatively well understood that there are large populations in the gay community—have people left the community out of fear? Are they leaving? . . .

Mr. CALLEN. Many of us go into these specific cities to escape the prejudice that we experience as gay and lesbian people. So where else are we going to go? Also, as was mentioned, our support systems are in these cities—our jobs, where we will get our insurance. For most people there is not the option to go anywhere else. If you are an openly gay person—you have to—most gay people I know tend to congregate in large urban centers, because there is perceived to be greater tolerance. …

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Mr. WEISS. … If there is anything that you want this committee or the Congress or the American people to know about AIDS generally or a particular situation, now is the time to do it. Any and all of you are welcome at this point to make closing comments. Mr. Lyon?

Mr. LYON. I came here today with the hope that this subcommittee would be able to do everything possible to halt the spread of this disease. AIDS has been called the number one health priority of the Nation. It certainly is my No. 1 priority.

I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need infighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.

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Mr. CALLEN. Well, as a person with AIDS, I suffer in two basic ways. I suffer from the disease itself, and I suffer from the stigma attached to being diagnosed with this disease. The end to both aspects of this suffering will come only if the vast resources of the Federal Government are turned on this problem.

We need answers to the pressing questions of cause, cure, and contagion. And so the bottom line is, as it almost always is, money. But in order to make that money accomplish something, it has to be well spent. … I have yet to see a comprehensive plan of attack emerge from the Government. What do they plan to do, in what order? Is there a master plan for research which is guiding their funding requests? Are they developing an animal model? What treatment options are being pursued? Which have been discarded? Why? …

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[Source: Congress, House, Committee on Government Operations, Federal Response to AIDS: Hearings before a Subcommittee of the Committee on Government Operations, House of Representatives, 98th Cong., 1st Sess., August 1 and 2, 1983 (Washington, DC: U.S. Government Printing Office, 1983). Available online via History Matters (http://historymatters.gmu.edu/d/6894/).]