Federal Response to AIDS
August 1, 1983 — US House of Representatives, Intergovernmental Relations and Human Resources Subcommittee of the Committee on Government Operations, Washington DC
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.
I was pleased to hear the number of questions posed about this. Perhaps I can add additional specifics to the extent to which the gay and lesbian community has indeed responded.
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.
Our community is proud of this response. But our experience in the front lines tell us that we cannot be expected to solve this crisis on our own. Our Government must respond to our needs.
We have found the administration has been out of touch with the magnitude of the crisis. It has been following, not leading the general pubic and the affected communities. In hearings before Congressman Waxman’s subcommittee, Dr. Brandt admitted that the fiscal 1984 budget which showed less money for AIDS work than in 1983 was “prepared before we understood in fact how much money it would require.”
That belated recognition is shocking enough. What is inconceivable is that the administration has yet to adjust its 1984 budget request.
More than 2 years after this medical crisis became generally recognized, the administration still has not presented a comprehensive plan of attack. Mr. Callen said it as eloquently as it could be said.
More than 2 months ago I wrote a letter to Secretary [Margaret] Heckler asking her to set forth just such plan. She has been unable or unwilling to do so.
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.
When you look at how NIH is handling the funding of research, what is driven home time and time again is that we lack the resources to do the job, even if you accept the administration’s more limited view of what needs to be done.
In point of fact, there are now more requests for applications out than money appropriated to fund them. Even the NIH bureaucracy recognizes a greater need than the budget cutters at OMB. $9.6 million was appropriated for NIH for basic research on AIDS, in fiscal 1982. State and local governments along with the private sector are coming close to matching that figure on their own. That is a very sad commentary on the Federal Government’s response, and what we have come to expect as an appropriate response.
You must know from our standpoint that the Government’s timetable has been simply unacceptable. We count not in months or weeks or in days, sir; we count in lives. We count in terms of lives that may very well be lost as a result of a lethargic response.
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.
Recently we could not ask for a more forthright response in the personal statements of PHS officials like Dr. Brandt, their sincere and willing effort to be out front in reassuring the general public about unwarranted concerns of casual contact with persons with AIDS and members of high risk groups. Unfortunately, the programmatic efforts backing up those statements seem to be very weak, leaving us open to the calculated abuses that we have witnessed in this 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.
From Secretary Heckler on down, the Health and Human Services Department has of late done an excellent public relations job, reassuring the public that there are not risks in giving blood, and that the dangers of receiving AIDS from a transfusion are minimal at worst. But where were they, sir, a year ago when this issues first surfaced and the overreaction could have been addressed? And why have they still not done the research needs to garner scientific support for that position, a position that the public wants to be assured about?
In another vital area, the particular concerns of groups at risk to AIDS are reflected most clearly in the issue of confidentiality, an issue I know that is quite controversial and of considerable importance to you, Mr. Chairman.
This issue has been used in what we consider to be unscrupulous ways, to paint the gay and lesbian community as irresponsible and unwilling to cooperate with CDC in the fight against AIDS.
At the very same time, we see that CDC has failed utterly to recognize the most basic patient rights of confidentiality and privacy. it is used as an excuse, sire, to deny this committee access to information vital to the legitimate performance of the oversight function.
I want to state unequivocally our position on confidentiality, and to offer some legislative proposals to provide strong and lasting protection for the privacy and confidentiality of persons with AIDS.
When we ask what steps have been taken to protect the confidentiality of the information CDC has already gathered, we are told, I have been personally told “Trust us.” But trust requires a history of credibility, and that is conspicuously lacking.
Some of the most basic social science research precautions for protecting confidentiality have not been observed.
Now, let me make one statement very clear. No community could be more concerned about hearing all the necessary information to find an answer to AIDS. It is our community that is being ravaged by this disease. We can and we must legitimately ask whether collecting full identification information along with sexual histories is an essential ingredient to epidemiological research.
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.
We propose that Congress enact legislation extending this protection to the privacy of medical surveillance and research documents to persons with AIDS, both in Federal agencies and those local jurisdictions receiving Federal funds.
With such legislation in hand, the concerns of our community would be addressed, and another precedent for privacy in patient rights would be established.
Mr. Chairman, there is a conclusion that my community is drawing — and the conclusion is that who is being stuck with this disease is part of why we haven’t found an answer to that disease. We live with this condition in our lives every moment.
It is vital that you, sir, that your committee, that the Congress understand basic aspects of our lives. we are part of a society that has for the most part treated us like outlaws. We have lived as outlaws in our own society. To ask for trust without guidelines, to ask that we endure what appears to be an interminable time lapse between the identification of a problem and the pursuit of a resolution of that problem is asking, too much of this community.
Source: 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: US Government Printing Office) 1983, pp. 17-21.