"This Is Not a Gay Issue. This Is a Human Issue": Early AIDS Patients Recount Their Experiences with the Disease

“This Is Not a Gay Issue. This Is a Human Issue”: Early AIDS Patients Recount Their Experiences with the Disease

In 1981, the U.S. medical community noticed a significant number of gay men living in urban areas with rare forms of pneumonia, cancer, and lymph disorders. The cluster of ailments was initially dubbed Gay-Related Immune Disease (GRID), but when similar illnesses increased in other groups, the name changed to Acquired Immune Deficiency Syndrome (AIDS). The mid-1980s saw a number of advances toward understanding and treating the disease, but no vaccine or cure was forthcoming. Gay advocacy and community-based organizations began providing services and pressuring government to increase funding for finding a cure and helping victims. Despite further drug therapy breakthroughs and prevention campaigns, in 1995 AIDS became the leading cause of death for Americans aged 25 to 44. By 2002, while the annual rate of new HIV cases dropped in the U.S. to 40,000 (from a 1980s high of 150,000), more than 20 million people worldwide had died from the disease, and 40 million were living with HIV. In the following 1983 testimony before a congressional committee, three AIDS patients described their personal experiences during the early years of the disease.

STATEMENT OF MICHAEL CALLEN, NEW YORK CITY

Mr. CALLEN. In December of 1981 I had some blood testing done by my private physician, and those tests indicated that I was immune deficient. In December of 1981 there was very little known about this disease, but there was in the gay press beginning to be reports of increased instances of very unusual diseases, and they outlined some of the symptoms. I was very concerned because I had some of these symptoms—fevers, night sweats, general lymphadenopathy, swelling of the lymph nodes, malaise, fatigue. So I had myself tested and, as I indicated, in December of 1981 I was told I was immune deficient.

The effect of being told that I was immune deficient was devastating. I called my parents and said “I am going to die.” I was not hospitalized until the summer of 1982, when I was diagnosed with cryptospordiosis, which is one of the qualifying opportunistic infections according to the CDC (Center for Disease Control) definition of this syndrome.

I was hospitalized for over a week with what is known as the wasting syndrome. It was the lowest point of my life. I was convinced from everything I read and heard that I was going to die. But I recovered from that specific infection, and I was rehospitalized in the fall of 1982. They suspected pneumocystis pneumonia. I had a bronchoscopy performed and other tests. It turned out to be bronchitis. But my story really illustrates one of the consistent stories for people who have this syndrome. So little is known.

When my doctor indicated to me in December of 1981 that I was immune deficient I said, “What does that mean?” And he said, “We don’t know.” So now a lot of people who are being told they are immune deficient are simply waiting, waiting for the next infection.

Now, I have come to believe that I am going to beat this disease. I no longer think that I am going to die. But it is very difficult when you pick up newspapers or turn on the television and you hear that no one has fully recovered from this syndrome, and that 80 percent of those diagnosed with the syndrome are dead after 2 years.

So I guess that is my story—waiting around for infections, checking myself every morning for Kaposi’s sarcoma lesions and waiting for information about this disease to be forthcoming.

Mr. WEISS. Thank you very much, Mr. Callen.

Mr. Lyon.

STATEMENT OF ROGER LYON, SAN FRANCISCO, CALIF.

Mr. LYON. Thank you, Mr. Chairman.

I was diagnosed with Kaposi sarcoma on February 3 of this year. Prior to that time I was having absolutely no AIDS-related symptoms whatsoever. On physical exam at that time three lesions were found internally. Prior to that I was being treated for an amoebic disorder, no real symptoms of AIDS.

February 3, basically 100, I think more exactly 180 days ago, I became aware I had a life-threatening disease. February 4 I entered UC, I went to University of California without an appointment, at the suggestion of my doctor, and started what is called their staging process—a battery of tests to determine the extent of this disease. At that time I was basically numb. I had no feeling. I was just moving. UC has been—they have been very kind and helpful. . . .

However, it is a matter of day-to-day waiting, waiting for something to happen, living in constant fear that I am going to wake up one morning to find lesions, waking up finding that I have some other opportunistic infection, cryptospordiosis, possibly pneumocystis pneumonia.

At this time I am basically living in fear of what is to come. Other than that, it is a day-to-day wait-and-see process. . . .

STATEMENT OF ANTHONY FERRARA, WASHINGTON, D.C.

Mr. FERRARA. The first idea there was something wrong with me was last summer. I had lymphadenopathy, swollen lymph glands especially around the jaws and throat and under the arms. That continued for a few months, but the whole time I felt quite good. I continued to run and jog and I experienced no fatigue, no night sweats, no fevers. In fact, in November, I finished the Marine Corps marathon, when I was supposedly very, very ill.

The lymphadenopathy went away. So I thought nothing further of it. But all along, I had been reading about AIDS, and of course, as every conscious gay man should be, was very worried about it.

In February, I saw two small purple lesions, one on the inner aspect of each of my lower thighs, and I knew what they were, or I knew what they could be, and I said I would wait a month and if they were still there in a month I would seek treatment or seek a diagnosis. Well, in the beginning of March they were still there.

I belong to the George Washington University HMO. I went there and told them that they really should biopsy one of these lesions to see what it was, gave them my sexual history and told them that there was a good chance I did have AIDS. They biopsied it, and the diagnosis was Kaposi’s sarcoma. That was March 8.

Obviously the first day I was very, very upset, and I went into a deep depression for about a month. I came home that night and my significant other held me in his arms, and I said to him, “Why do I feel like Ali McGraw, it is just like a movie, it is really terrible, it is the most horrible thing that ever happened.”

My depression lasted a month, and I decided if there was any chance I was going to get over this, if I had any chance of surviving at all, I would have to have a more positive attitude and just continue on, live my life as best I can, and try not to worry about it too much.

I was very lucky. I had the choice of being treated at GW by a very good cancer specialist there, who instilled a great deal of confidence in me, or I had the choice of being treated at the National Institutes of Health. I think it was an easy choice, because I think—NIH wanted me because I was so healthy at that point. I was a good specimen for research I think. And also, I felt that if I have the disease and no one knows anything about it, the best place to be treated would be where they are doing the research. . . .

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. . . .

Mr. MCCANDLESS. Thank you, Mr. Chairman.

Gentlemen, the Department of Health and Human Services has supplied us with statistics. I find them interesting and wish to throw them out for whatever value it may be.

If you wish to comment, it might be of assistance to us, and particularly me, in understanding the circumstances a little better.

According to these statistics, the total cases reported, both United States and foreign, are approximately 2,100. Of these two-thirds are in the States of New York and California, with the greatest percentage in the metropolitan areas of New York City, San Francisco, and Los Angeles.

Can you comment on why there is a concentration of cases in these areas with respect to the total figures, and the rest of the United States?

Mr. CALLEN. Well, I am not an epidemiologist. I think it indicates there are many, many unusual features about this syndrome. It indicates the need for really high quality epidemiological research to explain the unusual pattern of this disease. And to date, none of the epidemiology has been published. . . .

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. . . .

Mr. WEISS. We have touched on the emotional and medical aspects of the disorder and your reactions to it.

I wonder if we could touch just a bit on your professional or occupational background—how the syndrome has affected that, what kind of insurance coverage you have and who pays for the costs of your medical care.

We know, Mr. Ferrara, that you are at NIH. But I wonder, Mr. Lyon and Mr. Callen, how you and others in your situation are coping with this particular aspect of the problem.

Mr. CALLEN. Well, at the time I was initially diagnosed, I was a paralegal, and I had just changed jobs 3 months prior to my diagnosis. I have about $6,000 in hospital bills that the insurance company has declined to pay. They are claiming preexisting condition. It is unclear to me exactly why: whether they just are doing that to do it—as I understand some insurance companies do—or whether because the etiology of AIDS is so mysterious, they are going to claim that I had the syndrome at some point in the past. I am being chased by the hospitals for about $6,000. I don’t know how I am going to pay it.

Mr. WEISS. Mr. Lyon?

Mr. LYON. I work for a large leasing company. I am a sales representative. I am fortunate in the fact that I am still able to work. Many of the patients, many of my friends are totally unable to work. They are lucky if they can get up in the morning, shower, and go on about their daily activities.

As far as the costs, to date my medical bills have run in excess of $11,000. And I am not on any treatment whatsoever, not antibiotics, nothing. It is all diagnostic. Fortunately, my insurance, private medical insurance, has paid approximately 80 percent of that. That still leaves somewhere in the neighborhood of $2,500, $3,000 that I am responsible for.

Many of the patients, I think far, far more of the patients, do not have the benefit of private medical insurance. Many are on disability. Many are now seeking social security which, thank God, has become available. It is, however, a very lengthy time-consuming process. So much of the costs to many of the patients is thrown back on the community as a whole. Many people are just indigent in this area. . . .

Mr. FERRARA. I think part of the problem is the drugs involved are so extremely expensive, the experimental drugs. If any of them work, what my fear is is that, one, it is going to be too expensive to be widely disseminated, and two, the experimental status of the drugs may cause insurance companies to avoid paying for them.

Mr. WEISS. Has anyone at NIH indicated to you what your costs would be for the treatment and medication if in fact you were able to and had to secure care through private sources?

Mr. FERRARA. If I had to pay for the drugs I receive at NIH, at this point—I am not sure about this, but from indications that I received, the cost of the drugs would have already exceeded half a million dollars. . . .

Mr. WEISS. Given the parameters of our hearing and the time-frame in which we are operating, that completes the questions that we have specifically directed toward you.

However, I don’t want you to go without giving each of you the opportunity to fill in whatever gaps you think we have left. 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 redtape.

Mr. WEISS. Thank you, Mr. Lyon.

Mr. Ferrara?

Mr. FERRARA. I think I would just like to say that there is probably a limit to how much money the research community can spend on research for the disease. I think there are just so many minds that can go around and do so many experiments and spend so much money to try to find a cause, a cure, or a control.

Beyond research, I think if more funds are to be made available, a place where they can do a lot of good is in screening programs—moneys given directly to the gay community or organizations within the gay community that can set up this sort of thing, screening programs, to try and find out just how many people there are out there with the disease, and in that way halt the spread of the disease.

Mr. WEISS. Thank you.

Mr. Callen?

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. And I think that one of the things that is encouraging to me about this committee is that you have requested access to information from the governmental agencies dealing with this problem.

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?

So the first priority is money. The second is that the money be well spent, and that will require that there be a very clear master plan. There needs to be some sort of accountability, which is what this committee is all about.

I would also like to speak briefly to the issue of confidentiality, which is beginning to be mentioned more frequently in the context of AIDS research, and to clarify, because I think that the issue is often misunderstood.

The issue of confidentiality is really two issues. As you know, the information being collected by the Centers for Disease Control involves basically very sensitive personal information. So there exists the potential for the political abuse of information collected in the context of surveillance.

But the other more important issue of confidentiality, as I see it, is that we need to remove any and all obstacles to collecting accurate information. And the basic scenario is this: A representative of the Federal Government, a CDC (Center for Disease Control) representative, shows up at the bed of a person who has just been diagnosed with a life-threatening illness, and asks that person to admit to illegal acts—for example, drug abuse, sexual acts which are illegal in most States, acts of prostitution. . . .

We need to be reassured that the confidentiality of this very sensitive information is being protected. So I view whatever measures have to be taken to insure confidentiality as justified in a cost-benefit sense.

If you can assure people that the sensitive information being collected is being protected—that it cannot be used against them—you will encourage them to give more truthful responses; and truthful responses in turn will be more useful to researchers in terms of resolving the mystery of AIDS.

So to reiterate, money; money that is well spent; and sensitivity to the issues of confidentiality. I guess that is basically what I would like to see. . . .

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).