"A Time Bomb Inside of You": Social Service Organizations Advocate an Improved Federal Response to AIDS

“A Time Bomb Inside of You”: Social Service Organizations Advocate an Improved Federal Response to AIDS

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. In the following 1983 testimony before a congressional committee, three representatives of social service organizations sharply criticized the Reagan administration’s limited response to the AIDS crisis, advocated increased federal funding, and warned that AIDS was a societal “time bomb” likely to have grave consequences beyond the gay community. In 1995 AIDS became the leading cause of death for Americans aged 25 to 44. By mid-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.

STATEMENT OF VIRGINIA M. APUZZO, EXECUTIVE DIRECTOR, NATIONAL GAY TASK FORCE

Ms. APUZZO. My name is Virginia Apuzzo.

I am grateful for the opportunity to testify today. But I am saddened and, yes, I am angered by the necessity, a necessity brought on by what we perceive to be the Federal Government’s policy of gestures and not actions.

Quite simply, from our point of view, Mr. Chairman, the Federal Government’s response to the AIDS epidemic reveals that the health care system of the wealthiest country in the world is not equipped to meet the needs of its citizens in an emergency, however brief or extended that emergency might be.

Further, if we take a look at the Federal Government’s response to the AIDS crisis it leads unavoidably to the conclusion that within this administration, there is a sharp contrast between the rhetoric of concern and the reality of response. That failure is underscored when one looks at the record of the lesbian and gay community in filling the gap. . . .

The National Gay Task Force survey of community voluntary organizations found that $2.3 million was budgeted for AIDS projects in 1983 for the gay and lesbian community, with another $6.8 million being projected and budgeted for 1984 in the gay and lesbian community. These figures do not include local and State government grants to these groups, nor do they include the value of hundreds of thousands of voluntary hours in these programs.

Indeed, the National Gay Task Force last October opened up a crisis line, an 800 number, that would enable members of the community and the public at large to seek information about AIDS. We are getting in excess of 3,000 calls a day that we cannot respond to. And we are open 8 hours a day, 5 days a week, until 9 o’clock at night, so that we can take care of the concerns and the questions from the Western part of the country. . . .

My written testimony submitted to your committee details the failures of the Federal Government’s response in, first, setting out requests for research projects to study AIDS, second, in funding those projects which pass its review programs, and third, in even identifying such crucial study areas as the cause or etiology of AIDS, now set for funding for the first time, Mr. Chairman, in October of 1983. . . .

Because of its mysterious nature, and I submit, because of the groups associated with it, AIDS has generated something just short of a public panic. A good deal of that panic has been fostered by homophobes bent on turning a public health crisis into an opportunity to attack the gay and lesbian community. . . .

The hysteria created by those ill-intentioned people cannot be handled by the limited public health education efforts the Federal Government has put into effect; leaving us again very vulnerable. The Federal AIDS hotline, which started with only three lines and now fortunately has added five more, is still capable of handling only a fraction of the 10,000 calls that attempt to get through to it daily, and none of the calls after 5 p.m. eastern daylight savings time, when the hotline is shut down.

Federal public education efforts such as there are concentrate on the general public. That is good. But education about AIDS must also reach affected groups, persons with AIDS, and those who work in very close contact with persons who are from high-risk groups.

We have heard much about health care workers, about morticians, police officers, and others who are fearful of close contact. Most of those fears are unjustified. But it is hard to blame people who have not received clear-cut guidelines and concrete information to assure them. The Public Health Service should be taking a much stronger, a vitally needed lead role in this area.

Perhaps the one issue that is most inciting of hysteria has been concern about our Nation’s blood supply. Let me restate the gay community’s position on the issue of blood donations. At every possible forum, we have urged that those in our community who feel they might be at risk to AIDS or feel unwell to refrain from donating blood. We have felt that that is the responsible position. Recent reports about dangerously low blood supplies directly result from the Government’s failure to investigate the transmissibility of AIDS through blood, to develop a marker for AIDS in blood, to test surrogate markers, or to study the safety of the blood supply and giving blood.

The negative effect of this has been that blood donations seem to have endangered more lives by virtue of the lack of blood supply than AIDS itself. . . .

The National Gay Task Force and LAMDA Legal Defense and Education Fund are proposing today that the Congress adopt legislation to extend to all persons who are part of a federally-funded research or surveillance program the same confidentiality protection others already have under Federal law. The Drug Abuse Office and Treatment Act of 1972, for example, provides that medical records may be disclosed “only in accordance with the prior written consent of the patient,” except in rare cases.

Similar language covers alcohol abuse programs. . . .

STATEMENT OF ALAN P. BROWNSTEIN, EXECUTIVE DIRECTOR, NATIONAL HEMOPHILIA FOUNDATION

Mr. BROWNSTEIN. Thank you very much. . . .

Now we are faced with the frightening specter of AIDS. Although in absolute terms the number of hemophiliacs, 16, who have become afflicted with AIDS may seem small, the risk of contracting AIDS is far greater among hemophiliacs than any other risk group. Today, of the 20,000 hemophiliacs, one out of 1,250 has contracted AIDS.

Further, if you consider that there are approximately 7,500 hemophiliacs who are classified as severe, that is those who are far more dependent upon blood products, the risk is much greater, one out of every 500 hemophiliacs. It is indeed ironic that the very substance that has served to liberate hemophiliacs from the disabling aspects of their disease is now highly suspect as the source of AIDS.

The fear of AIDS among hemophiliacs has been exacerbated by extensive and in some instances distorted reporting by the media. Some patients have abandoned appropriate use of blood products because they fear contracting AIDS. This is documented by reported reductions in blood clotting factor sales. These are reports from industry as well as from treatment centers that are reporting reduced use of the much needed clotting factor. . . .

The risk of not treating exceeds the risk of contracting AIDS, because uncontrolled bleeding is the leading cause of death among hemophiliacs, not to mention the potential of serious orthopedic complications and crippling if bleeding episodes are untreated.

The fear of AIDS has other tragic implications. No longer are flu symptoms or fever passed off as trivial problems. Some family members have questioned whether physical closeness with hemophiliac children may be dangerous. Similarly, sexual partners wonder whether intercourse should be avoided. Many physicians and treatment centers are deluged with calls from apprehensive patients and families seeking information, and of course reassurance. Many patients are fearful that their treatment may be changed. And this is a threat to the autonomy they have gained through home therapy. And this represents a potential of being set back two decades to the old sense of helplessness and dependence upon others.

As you can see, the incidence of AIDS among hemophiliacs is of serious concern. But of even greater concern is the profound impact of the threat of AIDS. . . .

The AIDS crisis has created a need for comprehensive care for hemophiliacs that is greater than ever before. An informal sampling revealed a 25–35 percent increase in patient encounters at many comprehensive centers throughout the country due to AIDS. Physicians and nurses are seeing patients more frequently as patients are being examined and tested for AIDS type symptoms. Patients require more education concerning their risks and fears as well as the treatment of actual AIDS cases. This increased demand for care is most difficult because most of these treatment centers are operating on a shoestring budget as it is. . . .

STATEMENT OF MEL ROSEN, GAY MEN’S HEALTH CRISIS, NEW YORK CITY

Mr. ROSEN. Thank you, Mr. Chairman.

I will actually skip through my prepared statement and go down to the second page and talk to you about the specific services we have had to create within our organization because the community and basically the existing social service agencies do not meet the emergent needs of people with AIDS.

When a person is told he or she has AIDS it is not like hearing that they have cancer, for example. When you have cancer you are told what the diagnosis, prognosis and treatments are. When you are told that you have AIDS you are hearing that you have a time bomb inside of you, that any day you will get an opportunistic infection and one of these infections would kill you, usually within 3 years.

The person goes into a crisis. In many cases the person with AIDS does not have a nuclear family for support. We therefore created a crisis intervention unit of trained lay counselors who get to the person with AIDS within 12 hours of their initial phone call to us. This counselor actively works with the person with AIDS and helps them cope during this initial period. We started with 15 counselors last October; today we have 175.

Hopefully the person realizes after a while that they may not die tomorrow, next month or next year. At this point we introduce them to one of our support groups. People learned to cope from each other’s experiences. In October we started one group. Today we have 12 groups not only for people with AIDS but groups for husbands, wives, lovers, friends, mothers, fathers, and significant others. Although our name starts with the word “gay,” our services are offered to and used by all affected people and those around them.

We found that there were many people sent home from hospitals who were too sick to take care of themselves. We therefore created a buddy system or home attendant service made up of people who cook, clean, and generally care for the person at home with AIDS who is too sick to take care of themselves. In one case a person with AIDS was being thrown out of their house so the buddies found him a new apartment and moved him in one weekend. We started with 7 buddies; we now have 75.

The disease does not discriminate for or against people who are rich or poor. We found that people making $40,000 a year like my client were losing everything they had. Even people who were well-insured were wiped out after numerous stays in the hospitals. Each opportunistic infection could mean a month or more in the hospitals.

We set up a financial aid committee that assisted people with AIDS to apply for public assistance benefits they were entitled to. We also assisted numerous legislators to put pressure on the Social Security Administration to create a definition for AIDS so people could get disability insurance. Even when the definition was added, it was inadequate. Only people with the CDC definition of AIDS are eligible today; for example, herpes osters is not included. . . .

Our hotline which I mentioned earlier started receiving about 20 calls a week last summer. It now handles over 1,000 calls a week. Callers range from those in search of a medical doctor familiar with AIDS to people calling in a complete panic over what they perceive as a symptom. Thirty volunteers and one full-time staff member operate this line.

While misinformation or sensationalistic reporting has created the perception that the general public can contract AIDS through casual contact, the reality is that people with AIDS can contract opportunistic infections through casual contact with the general population. People with AIDS sometimes become shut-ins. We have tried to combat this by creating recreational groups that get people out of their homes and into social and recreational situations.

People with AIDS have an average age of 35. In addition they often are in nontraditional conjugal relationship. These two factors create a multitude of legal problems in terms of wills and power of attorney. Hospitals in many cases do not recognize what should be considered a common law relationship between two people. We have attempted to deal with these legal problems by coordinating a network of legal services which advise the person with AIDS of their legal rights and responsibilities. . . .

The Federal Government has not done its share. You must appropriate massive sums of money for research into this disease. You must appropriate money to the States so they can distribute moneys to local self-help organizations or set up their own programs. If you are not motivated to help disenfranchised groups, let me tell you something as a professional social worker.

Although it is not much talked about, sexuality is not static. People have different sexual preferences throughout their lives. This is part of the human condition. Talk by people who would turn a medical problem into a political one is disgraceful and belongs in the dark ages. For those who would consider legislating morality, this has been tried before without success. The human condition is continuously in flux.

Since most researchers and health officials have determined that this disease is sexually transmitted, it is probably the long incubation period that has kept the disease for the most part confined to certain groups. This will change shortly. There is a steaming locomotive roaring down the tracks at the general population. The people of this country depends on your God-given wisdom to ascertain the eventuality of certain events and to protect them.

I call upon you to not only appropriate the necessary funds but to create an office inside the Department of Health and Human Services that does two things: one, to establish a national effort that coordinates services to affected individuals and a national educational effort to the public at large and, two, gives resources and technical assistance to States and self-help organizations in locations where the disease is spreading or likely to spread.

[The prepared statement of Mr. Rosen follows:] . . .

I sit before you a very changed man from a year ago when I called the CDC. I have discovered that medicine, research and the so-called safeguards we have in place to warn us about pending disasters are political and do not work when disenfranchised minorities are involved. When toxic shock and Legionnaire’s disease first came on the scene there was an immediate response by government and press. Why did hundreds of people have to die before anyone moved in this case? Single people pay a very high percentage of their salaries to the federal tax structure. Since most of the affected individuals affected by AIDS are single they expect something back from the government they trust. It is the American way for us to respect and care for the individual person who is in trouble in our country. I have become disillusioned about this in the past year in relation to our government. However, I take heart in the response of the community itself. . . .

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).