THE PRESIDENTIAL COMMISSION on the HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
CONGRESSIONAL HEARING
September 30, 1987 PRESIDENTIAL COMMISSION ON THE
HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
COMMISSIONERS
ADMIRAL JAMES D. WATKINS, CHAIRMAN UNITED STATES NAVY (RETIRED)
COLLEEN CONWAY-WELCH, Ph.D.
JOHN J. CREEDON
THERESA L. CRENSHAW, M.D.
RICHARD M. DEVOS
KRISTINE H. GEBBIE, R.N., H.N.
BURTON JAMES LEE, 111, M.D. FRANK LILLY, Ph.D.
HIS EMINENCE JOHN CARDINAL O'CONNOR
BENY J. PRIMM, M.D.
REPRESENTATIVE PENNY PULLEN
CORY SerVAAS, M.D.
WILLIAM WALSH, M.D. PRESIDENTIAL COMMISSION ON THE HOMAN IMMUNODEFICIENCY VIRUS EPIDEMIC
CONGRESSIONAL HEARING
The Hearing was held at the Dirksen Senate Office Building First and C Streets, N.E. Room SD-106 Washington, D.C.
Wednesday, September 30, 1987
COMMISSION MEMBERS PRESENT:
W. EUGENE MAYBERRY, M.D., Chairman
WOODROW A. MYERS, JR., M.D., Co-Chairman
COLLEEN CONWAY-WELCH, Ph.D.
THERESA L. CRENSHAW, M.D.
BURTON JAMES LEE, 111, M.D.
FRANK LILLY, M.D.
CORY SerVaas, M.D.
WILLIAM B. WALSH, M.D.
ADMIRAL JAMES D. WATKINS (Retired) I-N-D-E-X
PAGE
WELCOME Dr. Mayberry, Chairman 1
STATEMENTS Robert Dole, Senator from Kansas 2
John C. Danforth, Senator from Missouri 7
SENATE COMMITTEE ON LABOR AND HUMAN RESOURCES Edward M. Kennedy, Senator from Massachusetts 12
HOUSE APPROPRIATIONS SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES Silvio Conte, Representative from Massachusetts 19
HOUSE SUBCOMMITTEE ON HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS Ted Weiss, Representative from New York 26
Jim Lightfoot, Representative from Iowa 32
SENATE COMMITTEE ON LABOR AND HUMAN RESOURCES (continued) Lowell Weicker, Senator from Connecticut 35
HOUSE SELECT COMMITTEE ON NARCOTICS ABUSE AND CONTROL Charles Rangel, Representative from New York 41
Benjamin Gilman, Representative from New York 47 PROCEEDINGS
MR- WALSH: Good afternoon, distinguished members of Congress and the Presidential Commission on the Human Immunodeficiency Virus Epidemic, ladies and gentlemen.
My name is Bill Walsh, 111. I serve as Executive Secretary to the Commission. In that capacity, under the Federal Advisory Committee Act, it is my privilege to declare this meeting open. Dr. Eugene Mayberry, Chairman, presiding.
DR. MAYBERRY: Thank you, Mr. Walsh. Good afternoon, distinguished members of Congress, fellow Commissioners, ladies and gentlemen.
The Presidential Commission on the Human Immunodeficiency Virus Epidemic is pleased to have this opportunity to publicly elicit the support of Congress in our efforts to prevent the spread of the HIV virus, to care for those who are sick, and to assist in finding a cure for this disease.
Today, we hope to initiate a public dialogue with the Congress. We welcome the recommendations, the ideas and suggestions of Congress on how we might best fulfill our mandate and mission.
This afternoon's meeting is a welcomed opportunity to meet with some members of Congress, but time will not permit us to meet with all of them. Consequently, we have had to limit this to members of the House and Senate who have been very active on this issue and to solicit their ideas concerning how we might best proceed.
Therefore, we hope to schedule additional meetings of this kind in the future. In fact, we have written a letter to each member of Congress and the Senate asking for their ideas and recommendations.
We earnestly seek the support of Congress and their advice and assistance. We need this in order to move ahead.
While we are waiting for Senator Dole to come, I would like to introduce my colleagues. On my far right is Admiral Watkins, former Chief of Naval Operations, who has had to deal With this epidemic as it has affected Naval personnel in the past.
On Admiral Watkins' left is Dr. Conway-Welch, Dean of Vanderbilt University, School of Nursing, who brings to us her experience in how this disease affects health care personnel. On her left is Dr. Lilly, who brings to the Commission a strong background as a Professor of Genetics and Chemistry and one involved in research in the retrovirus that will help us a great deal as we look to AIDS treatment. On his left is Dr. SerVaas, who has since 1973 been Editor and Publisher of the Saturday Evening Post. Perhaps most importantly for today's meeting, Dr. SerVaas has served as Medical Director of the Foundation for Preventive Medicine since 1976.
On her left is Dr. Walsh, the Founder and President of Project HOPE, who brings to us a strong and important background in international medicine.
On his left is Dr. Lee, who brings to us his excellent credentials as a practicing physician at Memorial Sloan-Kettering Cancer Center. As a specialist in lymphomas, Dr. Lee will be very helpful to us as we consider medicines to treat the AlDS- related cancer and Kaposi's sarcoma.
On his left is Dr. Crenshaw, who brings to us an extensive experience in treating sexually transmitted diseases at her own Crenshaw Clinic in San Diego.
On my immediate right is Dr. Myers, who is the Health Commissioner of the State of Indiana, and brings to the Commission experience in leading one of the best known state programs on AIDS, and who also serves as the Vice Chairman of the Commission.
I'm sure Senator Dole will be here momentarily. He is coming from the Senate Chamber where they are very actively engaged in debating some AIDS legislation today. We will take just a moment and wait for Senator Dole.
Senator Dole, the Commission is delighted to visit with us. I just said that we are pleased to be here on the Hill to solicit input from members of Congress and the Senate about how we collectively might work together to ensure the mandate which the Presidential Commission has been served.
At this time, it is my great pleasure to introduce Senator Robert Dole, Republican, Senior Senator from Kansas, Senior Republican Leader for the 100th Congress, Senate Majority Leader from 1981 to 1987, former Chairman of the Senate Finance Committee, Republican nominee for Vice President of the United States in 1976. Senator Dole, welcome.
SENATOR DOLE: Thank you very much. I appreciate the chance just to make a brief statement. Obviously, we are very happy to have you here. This is a very important issue.
I authored one of the Commission resolutions because I felt Congress needed help. We need some guidance. We need some direction. There are a lot of self starters in Congress. That is how we get here, I guess, to some extent. There are a lot of
2 bills floating around, a lot of money involved, and we want to make certain that we not only spend the money wisely but we are addressing the real problem.
That is why I want to commend everyone on the Commission. It is a very difficult assignment you have. It is very sensitive, controversial, and I have said as I have traveled around the country, I hope this is one thing that we can keep out of partisan politics. It seems to me it is something that ought to be addressed in a nonpartisan way. I know there is always a temptation, particularly in presidential years, but it is a problem that should be addressed, don't misunderstand me, and it should be addressed even before 1988.
I want to indicate that I think for many of my colleagues, it is going to have to be a cooperative effort. There have been a number of us in both parties who have been meeting months after months after months trying to find some common ground, some areas that we could in effect satisfy people on all sides of the issue and get something done.
I don't think anybody is going to have the final word. The White House is not going to have the final word. Congress is not going to have the final word or any one Senator. I believe that working together, we can get the job done.
With profound medical, moral, legal and ethical questions on the line, we need a broad based commission, an independent body, that will help us cut through the politics for the good of the nation.
Let's face it, this is just a little step, a tiny first step forward. The challenges ahead are enormous, certainly beyond my comprehension and I assume beyond the comprehension of many experts in the field. It isn't just our concern. It is an international anxiety.
It is clear that scientific research should receive the highest priority. Only by the development of a vaccine or a successful method of treatment for everyone will we reach our goal of eliminating the spread of the disease.
I am personally committed to allocating the necessary resources and I am equally convinced that my colleagues in the Congress hold a similar view. Let me underscore my bottom line around this place called Congress. I think we have to watch how taxpayers' dollars are spent. Waste and abuse applies to AIDS as much as it does to the Pentagon, and there is some waste and abuse obviously in the Pentagon and probably every other program.
There are other issues that we haven't been able to come to grips with. Maybe you can help us In the area of
3 discrimination. We tried to put together a bipartisan piece of legislation on discrimination. I don't think the federal government should just be a spectator. I also believe that the states are going to have a major role to play when it comes to discrimination, confidentiality, testing, education, whatever.
I think our experience with other groups, disabled Americans and others in the past have indicated that the federal government can play a leadership role. We simply can't discard the Federal role out of hand.
As everything else in the AIDS challenge, it will have to be a partnership, the states and the federal government working together. Fundamentally, the goal in my view has to be balancing of the needs of those who are infected with the needs of those who are not. As far as a national standard goes, we must proceed with all deliberate caution.
Caution must also apply to confidentiality. There are those who have a legitimate need to know, such as health care providers who have direct responsibility to the care and well being of the patients, as well as spouses. Needless violations of confidentiality and discrimination can be deadly side effects of the AIDS dilemma.
I would just say finally that everywhere I go these days, and I have been going a lot of places these days, I don't care whether it is a rural area in lowa or whether it is in a metropolitan area somewhere else in the country, you are almost always asked a question about AIDS.
I don't understand the problem. It is incomprehensible to understand it as fully as members of the Commission will have to. I understand there is a problem. I understand what may be a moral problem becomes a medical problem. I wish I could produce an answer. I wish the Congress could come up with some answer. There is a lot of emotion, a lot of fear and a lot of misunderstanding. I think the American people are expecting leadership.
That is what the Commission is all about. I guess I can say on behalf of my colleagues on both sides of the aisle, we need help. We need some direction. We need to know that when we get into the areas of testing and discrimination, confidentiality, that we have looked at all the options, that we understand the problem, that we not try to play political games, who can be on the right, who can be on the left. What we need to find out is who can solve the problem and who can deal with the problem effectively.
I don't mean to suggest that Congress should always pass the buck to the Commission. I think when it is a very
4 highly technical, scientific, medical area, we don't have the expertise. You have. We certainly appreciate your willingness to take the time from your jobs or professions to give us the benefit of your views.
That's my statement. I wish I could come in and say I have a new vaccine that I learned about in one of the town meetings in lowa, but I haven't discovered that yet.
DR. MAYBERRY: Thank you very much, Senator. I know your schedule is very busy and you have to get back to the Chambers. Would you have time for a couple of questions?
SENATOR DOLE: Yes. I may not have the answer but I have the time.
DR. MAYBERRY; Dr. Lee?
DR. LEE: Senator Dole, you are one of the originators of the Medicare program, certainly facilitating it. The AIDS patients have to wait two years before they are eligible. What is your stand on facilitating that for the AIDS patients?
SENATOR DOLE: My view is that many of them are not going to be alive two years later. It ought to be modified. There has been a bill introduced, and I think it reduces the 24 months. I think we need to take a look at it. We are talking about somebody in that condition, 24 months is a long time, and too long for many.
DR. MAYBERRY: Admiral Watkins?
ADMIRAL WATKINS: Senator Dole, we have had a chance to review some of the bills before the Congress. There is a certain degree of commonality between Mr. Waxman's bill in the House and Senator Kennedy's bill in the Senate concerning some of the areas you mentioned, confidentiality, discrimination and the like. Do you anticipate in the remaining session of this Congress, that there will be time to consolidate views between the two houses and actually pass legislation during this session or do you anticipate it might come some time in the next session?
SENATOR DOLE: I guess it depends on how long we are going to be in session. I would guess we are going to be around here until mid-December. We had been working on the bill that came out of the Labor Committee, in fact, that is a bipartisan bill as far as it goes. It doesn't cover all the tough parts, but as far as it goes, it is a bipartisan bill. We thought we would pass that quite easily, but we have learned there is some opposition to it.
5 It would be my hope that we could pass it this year. Again, I think the HIV epidemic has to be considered as something that needs emergency treatment, legislative treatment. I know from the outside, it may appear that we never get anything done around here very quickly, but there are times when we understand fully the need to move quickly and this Congress can do it.
My view is we ought to do it this year. Next year, and I shouldn't bring up 1988 politics, but there are some out there I discovered, and if this becomes embroiled in the 1988 process, then our chances for good legislation are less likely to happen.
DR. SERVAAS: Do you have any idea about increasing the safety of the blood supply, Senator Dole? Any legislation that you see coming up this year or soon requiring people who want to donate blood to give their forwarding addresses and make it mandatory to leave their Social Security numbers or some way so we can catch early infected people who do contribute blood today, to make the blood supply safer?
SENATOR DOLE: I'm not aware of that. It is probably something that might be addressed. I don't know of any legislation.
DR. SERVAAS: Representative Dannemeyer has some bills in and I understand they aren't marked up or anything like that. I wondered if the Senate has anyone who is interested in helping get some tighter restrictions on the people who donate blood.
SENATOR DOLE: The answer would be yes. I'm not certain it has been reduced to bill form.
DR. MAYBERRY: Senator, we want to assure you that if there is some way in the days and months ahead that it occurs to you that the Commission might interact with you and the members of the House and Senate, we are ready and anxious to do so. If something occurs to you that we ought to be doing or you have some suggestions, we would be more than grateful for your input.
SENATOR DOLE: I know there is another House bill on another commission. We don't need too many commissions. I think Congress is in effect a commission. We know we ought to be able to come to grips with this problem. I think we also recognize we need a lot of outside assistance. That is hopefully what we will have from this commission. We will be keeping in touch either through our staff and your staff or directly. Thank you.
DR. MAYBERRY: Thank you again for coming. We appreciate it very much. Members of the press and media might be interested to know that we have scheduled times pretty tightly from 2:00 o'clock to 6:00 o'clock, but those of you who cover these activities know that they are a little bit unpredictable
6 from time, depending upon when people are free. So unfortunately, we are sorry that there will be gaps for you as well as for us, and we on the Commission understand and hope that you will, too.
[Pause.]
DR. MAYBERRY: Senator, we are very pleased that you would join us today. The Presidential Commission on the HIV Epidemic is pleased to be here on the Hill, and we are seeking input from the Senate and the House about our mission, and we welcome an opportunity to hear from you about directions and concerns that you might have, and missions for us.
It is my pleasure at this time to introduce John C. Danforth, who is the Republican Senior Senator from Missouri. Senator Danforth is an ordained Episcopal priest. He is best known for his work on economic and trade issues. He has developed a strong interest in and a great deal of expertise in AIDS-related issues. Senator Danforth, welcome.
SENATOR DANFORTH: Mr. Chairman, thank you very much. Members of the Commission, if you are truly interested in free advice, you have come to the right place.
[Laughter.]
SENATOR DANFORTH: Mr. Chairman, I appreciate the opportunity to visit with the Commission. I have really only one thought for you, and it is a specific thought, specific suggestion, and I would like first to tell you the basis for the suggestion.
A couple of months ago, maybe more, the issue of AIDS arose on the floor of the Senate. Two amendments were offered. One, I think, related to testing and the other related to the funding of an AZT program, and these amendments were offered on the floor without any prior consideration by committee, and I happened to be on the floor at the time, and I thought, we are going off half-cocked. We have not really thought out where we are going, or where we should be going with this disease, and it would be a mistake to agree to these amendments at this time.
Having taken the position on the floor of the Senate that it was premature to do what those who offered the amendments suggested, I thought I just can't have a really purely negative position for everybody else's ideas. I should try to develop some thoughts myself, and some positive constructive ideas myself on dealing with the question of AIDS. So I went around and talked to anybody I could find, people who knew much more than I did, certainly, and went out to NIH and talked to the people out there, and talked to some experts back in my home state of
7 Missouri, and concluded on the basis of those discussions that the most important thing we can do with respect to the subject of AIDS is education.
It seems to me that if we can't cure the disease, and probably won't be able to for a long time, and if we can't inoculate against the disease, and won't be able to for a long time, then the best thing we can do is to try to prevent people from getting it. And the best way to prevent getting it is to understand how it is transmitted and avoid doing those things that do transmit it.
And, furthermore, it seems to me that education has the initial benefit of being able to prevent panic, because I think that any time there is a sense of imminent disaster, people, their children threatened by a lethal illness, fatal illness, panic can set in, and I think especially a few months ago, there was some sign of this in the country. A lot of people were proposing quarantining people and so forth.
So to me, both for the sake of preventing the spread of the disease and also preventing panic, education, I thought and think, was the most important single thing that could be done.
And then I started thinking about what could be done in education, and clearly a part of the problem has to do with a subgroup in this country, those who are IV drug users, and it is said that they are very hard to reach, and I am sure that is true, and I don't have anything particular to offer the Commission on how to target an educational program to IV drug users. I assume that some targeted program is necessary in that case, but with respect to the rest of the population, it would seem that it would be a much easier job to impart to the public the basic information. The idea that I have for how to impart that basic information is for the President to go on television and to have a briefing in which the three leading experts on the subject of AIDS briefed the President on nationwide television.
Now, why the President? Why not just have the three experts? Well, the reason for that is that the President is capable of preempting the network news. He can do that. So if the President were to announce, say, that he wanted to make a speech on the Persian Gulf or anything else on television, he immediately would command an audience of 50 million, 100 million Americans, instantly.
So the thought that I would have was that the President would be part of this program so that he could command that kind of attention and preempt the networks. But his role would be somewhat different, quite different from the usual role of the President speaking from the Oval Office. Clearly he is not a man of scientific expertise, medical expertise, but he is viewed by a
8 lot of people in this country as a kind of a stand-in for the public. And if he were to be, for example, in the Oval Office or in the Cabinet Room and have say three leading experts with him, and if he were to ask fundamental questions to those experts, it would seem to me to be an excellent way of getting the information out to the public.
Some of the questions that he might ask, for example, would be, "Can you contract this disease by going to school with somebody who has it?" And that is a matter of real concern to a lot of people. Everyone I have asked the question to, who knows about the disease, says flatly the answer to that is no.
"Can you contract the disease by riding in an elevator with somebody who has AIDS and the person sneezes on you?" Again, my understanding is the answer to that question is no.
"How do you contract the disease?" Well, you contract the disease two ways; One is intravenous blood transmission one is birth, of course, but I mean as far as the public basically is concerned, intravenous blood contact and the other is sexual contact. I would think that if the President were to put those questions very specifically to the experts and get the kind of flat statements of fact that I received when I put the questions to the experts, it would go a long way toward both educating the public and relieving some of the panicky concern that a lot of people have shown about the idea, about the disease.
Now, like anybody else around this place who tries to peddle an idea, I tried to peddle this, and I think I wrote the Commission and set the idea forth in a letter, and I also spoke to Dr. Fauci at NIH about it, and his reaction was that it would be an absolutely terrific program, television program, and that it would be maybe the most important use of the President's time ever.
I also tried the idea out on Howard Baker, the President's Chief of Staff, and maybe he was just being kind to me, but he said that he thought that it was a very good idea. But he said that as far as the President was concerned, any idea that the President would act on would come from the Commission, not from the White House itself.
So that's why I am here, Mr. Chairman, to trot out the idea for whatever it's worth, and if the Commission is interested in it, it would seem to me to be a very, very useful format for trying to educate the American public on the question of AIDS.
DR. MAYBERRY: Thank you. Senator Danforth, for a very thoughtful comment and remark and suggestion. Would you have a few moments that we might ask a few questions?
9 SENATOR DANFORTH; Surely.
DR. MAYBERRY; Admiral Watkins?
ADMIRAL WATKINS; Senator Danforth, there was a nationwide television broadcast about 10 days ago that gave us 55 questions. It was a two-hour broadcast, narrated by Steve Bell, the I believe. It was a very fine broadcast, put on by Metropolitan Life, of which the chairman is a member of this Commission, in an attempt to do just what you're saying, and I agree that your idea has great merit.
The answers that came in nationally were shocking, and you people did not understand how the virus was transmitted. If gave that 55 questions to the Congress of the United States, what would be the average grade?
In other words, what is going on, except for very specially interested people like yourself and some of the others a who have introduced bills, for a thorough understanding and briefing of every member of Congress, so that they can get a high passing grade on the 55 questions?
SENATOR DANFORTH; There have been some briefings of members of Congress on the question. There are a number of people who have come in to members' offices and given us private briefings.
There also have been the opportunities for people to attend meetings with groups of, for example, Senators and experts. The total number of people who have attended those meetings, I don't know, I wouldn't know the answer to that.
I think that when there is something to be feared a and AIDS is certainly something to be feared there is almost premium on people who push the panic button before the public. by You always get an audience, you always get press coverage, making people frightened, and so I think that it is very important to increase the number of people who have a public accurately and forum, who are going to deal with this question responsibly, rather than raising the specter of disaster in everybody's minds.
DR. MAYBERRY; Dr. Lilly.
DR. LILLY: Senator Danforth, I am wondering what in your estimation is the likelihood that Congress will come up with a strong bill recommending an educational matrix for the country?
SENATOR DANFORTH; Well, I think that there would be widespread agreement on education in Congress. I think that are would be something that would be readily agreed upon. There
10 some very divisive issues which I would view as really kind of a secondary issue myself. One would be testing. Some people have gotten off on that tangent. One would have to do with anti- discrimination legislation. That obviously is something that has been very, very controversial. But on education itself, I think it would be easy to form a very strong consensus, and because I think that is the most important thing we can do, anyhow, I would rather see us focus on the area where we can form a consensus rather than in the more divisive and more marginal subissues.
DR. LILLY: One thing I am wondering about, within the area of education, however, the possibility of educating with respect to safe sex or safer sex methodologies is also perhaps a divisive issue. Do you think Congress would be touching that issue?
SENATOR DANFORTH: I think that depends on how it is done. Let us suppose that a bill were introduced, and the bill said that on public television, there have to be explicit commercials on how to use safe sex techniques. That would be something that would be a non-starter, I think, politically.
I think, however, that if general education were conducted as to how the disease is transmitted and how it is not transmitted, that would really suffice for most people. And then if you wanted to have a more targeted approach directed toward some segment of the population, that would be a different matter and a more palatable matter, as far as most politicians are concerned.
DR. MAYBERRY: Senator, we appreciate so very much your willingness to be with us today. We look forward to having your input to the Commission in the months ahead, and we have your suggestion, and we will keep that very much in mind in our deliberations, and we will see how we might be able to help you out.
SENATOR DANFORTH: Mr. Chairman, members of the Commission, thank you very much.
DR. MAYBERRY: Thank you, sir.
[Pause.]
DR. MAYBERRY: I might say while we're waiting here just a moment, because of the need to get on with having some interaction between the Congress and the Commissioners as soon as possible. We had to arrange our meeting on relatively short order, such that four of our Commission members were out of the country or had prior engagements that could not be changed, but Ms. Penny Pullen, Mr. John Creedon, Cardinal O'Connor, and Mr.
11 Rich DeVos very much regretted their inability to change their schedules or having to be out of the country at this point in time, but look forward to being with us on other occasions when we have a chance to have interaction with the Congress.
Senator, we are so very pleased that you could join us today. The members of the Commission are very pleased to be with you on the Hill and to solicit the input from you and some of your colleagues relative to some of your concerns and suggestions for the work of the Commission.
It is indeed a great pleasure for me, on behalf of the Commission, to introduce Edward M. Kennedy, a Democrat, Senior Senator from Massachusetts, Chairman of the Committee on Labor and Human Resources, best known for his advocacy of health and social welfare programs both within the Democratic party and nationally, and a candidate for the Presidential nomination in 1980. Welcome.
SENATOR KENNEDY: Well, first of all, I want to extend as a member of the Senate my very warm appreciation for the members of the Commission to come up here this afternoon and be willing to listen to some of those of us in the Senate and the House of Representatives who have tried to be a constructive force in addressing one of the greatest, perhaps the greatest kind of health public health problem that this nation and perhaps the world has ever faced. I'd like, if we could I see a recorder here to maybe just put my full statement in the record and summarize my views, Mr. Chairman.
SENATOR KENNEDY: Mr. Chairman, we have in our Human Resources Committee in the past several weeks passed out legislation that deals with the research program, the education program, training program, and that legislation was virtually unanimously accepted by Republican and Democratic members. It is rare that we have that sense of unanimity, but it was very clear that even though members of that panel had individually introduced different pieces of legislation, we were able to fashion strong legislation that passed with the Republican and Democratic support, that identical legislation being considered now in the House of Representatives.
So hopefully by the time that we get action on that proposal and meet in conference, the differences between the House and Senate in those particular areas, whatever differences there are, can be readily resolved and that we can move very quickly and follow some of the important recommendations in that particular proposal. That proposal not only includes the research aspect of our commitment and, I believe, the information that we have seen in recent times would justify even an increase in the resources that we recommended, given some of the new realities, our bill does put an emphasis and stress on a national
12 education program that is carefully crafted to be acceptable to those that understand the importance of a national education program, but are also sensitive to some of the particular needs of various local kinds of concerns.
It also sets out some of the important > imaginative, creative programs in dealing with home health care. It talks about the training of new health personnel. I think all of us are very mindful that we are going to have to develop new types of health training and new types of health care personnel.
I am very hopeful that we can pass that legislation in the Senate in the next several weeks. I am mindful of the debates which are just taking place in the defense authorization. I am mindful also of the potential debate or the debate that will take place at the request of the President with regard to the judicial nominee for the Supreme Court, which hopefully will take place in the very near future.
But I believe that it is essential that we are going to pass that legislation in the next very few weeks. And to gain the support of the Commission to ensure that we are going to implement those recommendations, would be of enormous value and extremely helpful, and I think your support for that proposal would be useful and valuable.
Up to this moment, I think there's only two members of the Senate who have indicated amendments to that legislation. Whatever all of us can do to see an early consideration of that legislation, I think will be enormously valuable and helpful, not only because of the substance of the legislation, but because of the strong indication that we, as a country, the people's representatives and this Commission, are about action and about results, and it would send a very strong and a very positive message.
The second piece of legislation that we have already started our hearings on and which I'm very hopeful we can gain the support of the Commission working with us is legislation dealing with testing, dealing with confidentiality, and dealing with anti-discriminatory provisions. That legislation is controversial, although by and large it accepts the recommendations that have been made by the Institute of Medicine, the Academy of Sciences, by the Centers for Disease Control, by the various public health officials from all different parts of the country, and I believe that it's ah indispensable part of the total effort that we are making in the Congress in this session.
I think to some extent this legislation is not as well understood as some of those who have been critics of it maintained, and I would hope that the Commission itsel-f'would examine this carefully, would work closely with the staff of our
13 committee and with the other members of the Senate, some who are on our Committee on Human Resources and others who are not, to try and see if we can gain the help and support of the Commission in support of this legislation. It basically incorporates the recommendations that again have been made by the public health officials.
I think all of us are very mindful that this disease is not going to be resolved by ideology. It's a health problem, and as in all health problems what we ought to do is take the best of the health care minds that we have in our country, men and women who have thought about public health over a long period of time, who have spent a good deal of time on this issue, to try and help and assist us in incorporating that legislation dealing with the testing, dealing with the confidentiality, and dealing with anti-discriminatory provisions, hopefully we can gain support.
Those three aspects of the legislation are very carefully intertwined. I think unless you're going to have the various protections that are included in that legislation on the issues of confidentiality, I think we lessen the incentive for testing in our voluntary testing in our society. I think that has to be self-evident. Once we do have the testing and encourage voluntary testing and then if we're able to provide the confidentiality, and that obviously is a balance, and I think a careful examination would feel that we have balanced the interest in terms of privacy with also some of the public health implications, they could find that there is a very strong, sensible, rational basis for the confidentiality provisions that we have included in that legislation.
But once again, if we are going to expect that we are going to encourage people to move towards testing, and we do provide some degree of flexibility in the areas of confidentiality in order to try and ensure adequate protections for individuals who may be contacted with that disease, then it becomes extremely important that we have significant anti- discriminatory provisions. If we don't have the anti- discriminatory provisions and we expect people to come in with voluntary testing, and then we try and deal with some of the public problems that will come in the area of confidentiality, and there is some, perhaps, opportunity for some communications which are unauthorized or unwarranted, we have to ensure that the individuals are going to be protected with strong anti- discriminatory provisions. Unless we do, I think we undermine the real possibilities of trying to encourage the testing provisions. I think they are all intertwined, intermingled, and virtually indispensable together.
I think only if we move ahead in that totality with research, with education, with the training, with a variety of different ways and means that we have in terms of looking for new
14 means and ways in which we're going to be able to treat the individuals as human beings that need both attention, medical attention and also need the caring and the support from their families and from a caring community, can we really expect that we are going to expect to have the kind of desired results that I know is the objective of this Commission and, I think, of those of us in the Congress.
I would hope, Mr. Chairman and members of the Commission, that you would also work with us as we try to provide individual initiatives in the Senate and the House of Representatives and try to stir some of the agencies into action.
We appropriated some 20 millions of dollars this year for a public information campaign, for a mailing campaign by the Centers for Disease Control. That money will not be used this year, even though it's extremely important that it be used immediately, because a decision has been made by the Centers for Disease Control that it's too complicated and difficult to get the mailing out prior to the Christmas rush. Well, that response, that reaction, I find unsatisfactory, and I think to the extent that you are able to give energy and give support to the efforts that have been developed in the Congress and by individuals outside the Congress, suggestions that come to us and that we take action on, I think you can be a helpful and constructive force.
I think there are some indications in some areas, for example, in building various research facilities and including adequacy of various personnel in these research facilities in a timely fashion, that there also has been some bureaucratic barriers which have hindered the general kinds of progress that should and can be made and progress which reflects a combined bipartisan effort in the Senate and in the House of Representatives.
We are mindful of your charge. You have a very broad and sweeping mandate. I've been a member of the Senate some 25 years. I've held hearings about what happened to various commissions' reports. We have a different tradition, for example, than the United Kingdom. When there is effectively a commission established in the UK and they make their report, there has to be a governmental response to each and every one of the recommendations as a part of the Royal Commission process and procedure. That does not exist in the United States.
I've been here since we've had the Kerner Commission and the Brown Commission and a number of other commissions, and I am mindful that their recommendations are gathering dust. I've also been here since they had commissions like the Burt-Marshall Commission that made recommendations on a random selection system that changed the whole concept of burden sharing at the tail end
15 of the Vietnam War, moving from drafts and various exemptions into a random selection system that made the risk of life and death among the young people more evenly distributed along socio-economic patterns. And it was widely accepted and made a very important and significant difference.
And so I would hope that this commission that now has gotten the attention of the country and of the nation, is going to recognize that we need their intervention. We need their energy. We know there are divisions, but I would hope that the Commission would be guided by the sound public health recommendations which, I think, have at the core been the kind of recommendations which heretofore have been in a number of instances embraced by the public generally and have been embraced by the House and Senate of the United States, and that we could work in a harmonious way to make a difference in what really is the number one public health problem for our country, and as we know, as we move down in the next two or three or four years is going to be of pandemic proportions.
We have to place this as a first order of business on the unfinished agenda for our country. This commission can play an indispensable role in putting that as part of our unfinished agenda, both in terms of the country and in the Congress and within the various governmental agencies.
I, for one, look forward to working in a constructive way with the Commission, and I think it has a challenge. It's an important challenge, and I'm sure the Commission is worthy of that challenge, and I look forward to doing whatever I can to advance the common interests of the public health of the American people and importantly as well the public health of the world community that is going to be afflicted by this scourge as well. Thank you very much.
DR. MAYBERRY: Senator, thank you very much. We appreciate so very much your leadership in this difficult problem. We especially welcome the opportunity to forge a partnership between your leadership and the House and Senate working together on this difficult problem for the betterment of society generally. We are very, very grateful for that opportunity.
SENATOR KENNEDY: Thank you very much.
DR. MAYBERRY: I know your schedule is very busy, but would you have time for just a few questions?
SENATOR KENNEDY: Sure.
DR. MAYBERRY; Dr. Myers
16 DR. MYERS: Senator, both you and Secretary Otis Bowen have spoken out vigorously against discrimination against those who have the virus. Your legislation has specific federal mandates against discrimination, and I'm interested to know what you think the advantages of the federal approach are over a state-by-state approach.
SENATOR KENNEDY; Well, I think the state-by-state approach is clearly on its face inadequate. I have great respect for Dr. Bowen, but to have 50 different types of legislation dealing with this particular virus makes no common sense whatsoever. As we develop a common understanding or a common direction in terms of a wide range of public health problems, we understand that state boundaries do not restrict the movement of the virus in a society which is highly mobile and where about a third of our population is moving virtually every year, settling in new areas, new states. There is now in the employment situation individuals being trained, for 3 moves probably through the job market, three different careers that's going to be the expected result, rather than the traditional and historic one career everything points for trying to work out a sensible and responsible viewpoint on this issue that can be of such a description where it will be satisfactory in terms of the 50 states.
If you look through in the areas of education, for example, we provide a great deal of flexibility within various localities and various communities. I believe that there is the kind of flexibility in our legislation providing for confidentiality and for anti-discriminatory provisions, but I think just on its nature, confidentiality doesn't mean that it's confidential in Massachusetts and not confidential in Rhode Island, and I think we're talking about a problem that deserves a uniform kind of a response. If any public health problem does, this one certainly does, and I think this is the only way we could really expect to have a meaningful approach.
DR. MAYBERRY: Dr. SerVaas?
DR. SERVAAS: Senator Kennedy, do you see any role for the private sector in voluntary testing? I feel like a stand-in for women, and it's my understanding that when a woman is AIDS-positive and gets pregnant, that her immune system is suppressed, and she's apt to go ahead and get full-blown AIDS right away. We think it's urgent to get all women tested before they become pregnant, if they have any possible risk of being AIDS-positive. How can the private sector, the churches and private organizations, Teen Challenge and all these organizations out in place with post-addicts, former drug addicts and things like that, how can they augment what the government is doing in voluntary testing?
17 SENATOR KENNEDY; Well, I think that you've raised an extremely important aspect of our whole effort, and that is to encourage as much voluntary testing among the population as possible. I think all of us are mindful of, you know, the complications even under existing tests in terms of testing positive or negative and the reliability of those tests, but I think all of us are very mindful of the very significant progress that is being made daily in terms of greater reliability on testing, and we ought to do everything that we possibly can in the public sector, in the private sector, with the church groups, in terms of voluntary testing, particularly with those groups that are at highest risk.
I think there is a role for mandatory testing, but I think it's limited myself. I think you have to expect it in terms of the armed forces, where you're going to have the potential blood transfusion, maybe foreign service officers. There are other areas as well that may fall within that general category, but I think we have to begin then to think as we move on in, particularly in the area of mandating testing as well as voluntary testing, the very important and significant aspects of confidentiality, or we're not going to expect or get a great positive response. I think if we say that we provide even the private sector, which I think there is an important, extremely important role for voluntary testing, but then these matters are going to be made a matter of general understanding among the community, I think that is going to be an extraordinary hindrance in terms of encouraging our population.
I know I'm not being probably as precise in terms of ways and means of encouraging the private sector, other than to indicate broad support for their involvement. I imagine many of the most enlightened companies are beginning to try and develop ways and means of encouraging voluntary testing at the present time. Certainly we ought to try and find ways and means of encouraging it.
DR. MAYBERRY: Senator, thank you so very much. We do look forward to working with you and your staff in the months ahead. Thank you for coming.
SENATOR KENNEDY: Thank you very much.
Could I just take the time, Mr. Chairman, to introduce Mona Safferty and Terry Bern. They are two members of our staff of the Human Resources Committee. We find up around here that a great deal of work in this place is done through effective members of our staff. These two have been invaluable to me and the members of our committee, and I know they will be delighted to work with you and your staff as well. I wanted to just introduce them to the members of the panel.
18 DR. MAYBERRY: They / ve been very helpful.
SENATOR KENNEDY: The Commission is obviously off to a good start with this next witness
DR. MAYBERRY: Congressman, the members of the Presidential Commission on the HIV Virus Epidemic are very pleased to have the opportunity to have your input. We appreciate your taking the time to express to us some of your concerns and ideas and aspirations for the Presidential Commission, and it is my pleasure to introduce at this time Representative Silvio Conte, a Republican from the State of Massachusetts. It seems like we had someone else from Massachusetts just recently.
This is his fifteenth term in the House. As Ranking Minority Member of the House Appropriations Subcommittee on Labor, Health, and Human Services, Education and Related Agencies, he has been a very strong proponent of funding for biomedical research including increased funding for AIDS research. Congressman, welcome.
REPRESENTITIVE CONTE: Thank you. Good afternoon, Dr. Mayberry and members of the Commission. I want to join with the others in welcoming you to the Hill and commend you for convening this discussion. lam pleased to share with you some of the specific questions regarding AIDS that I have confronted in my role as the Ranking Minority Member of the House Appropriations Labor/HHS Subcommittee and to talk about your mission and how you might help to answer some of those questions.
When our subcommittee met to mark up its bill in early July, we spent the bulk of our time discussing AIDS. The bill includes almost a billion dollars to fight AIDS through research into its causes, into developing treatment, and research into how best to provide health care services for AIDS victims, support for training health care workers to deal with this illness, funding for education and testing and counseling and a lot more. Our discussion did not really involve how much to allocate to the fight for AIDS. We used every penny that was allocated to us by the Budget Committee. And I might say it's ironic that back in 1982 when I was questioning CDC on other sexual transmitted diseases, that when we marked up that bill, I heard for the first time about AIDS, it was an unnamed disease at that time, and in the markup I asked my chairman, Bill Natcher, if I could put $5 million into the budget for research on AIDS, and last year or this year we appropriated close to a billion.
We had two concerns, as I say, first how to revise the existing federal research structure to make it more targeted.
19 more coordinated and to superimpose a new superstructure that was capable of dealing with this epidemic, and second, how to allocate funds among the different activities that need to be undertaken in order to fight AIDS.
Every kind of anti-AIDS activity will get greatly increased funding in FY 'BB, but the subcommittee felt strongly that public education was particularly important. After all, without a cure for this disease, with a successful vaccine still years away, helping people protect themselves from infection is the most immediate avenue that we can take.
With regard to the first concern, we decided to call for the creation of a network of outside advisory committees which would help the Centers for Disease Control, the National Institutes of Health, and the Alcohol, Drug Abuse, and Mental Health Administrations to interact more effectively with each other and to make sure that all the bases were covered and to draw more on the private sector talent and expertise for a fresh perspective and a source for additional creativity.
We also directed that the AIDS Advisory Board be set up to make a regular report to the Secretary of HHS and the Congress. This Board will have a virtually unlimited agenda like yours. In fact, the principal difference is that the Advisory Board that we envision will be an ongoing body and not a temporary one.
What would we like to see you do in the short time that you have been given? Frankly, I think your agenda is impossibly broad considering the short-term period that you have. I think a lot of the issues you've been asked to consider are issues which other bodies are hard at work on. For example, we need to get a picture of where the gaps are in our research projects, whether there are regulatory bottlenecks holding up the development of new drugs and vaccines, but OTA did some groundwork on this two years ago. HHS produced a report one year ago, and now the Institute of Medicine has a task force working on this.
We also need to know what's happening in terms of the state legislatures regarding AIDS. The Intergovernmental Health Policy Project at George Washington University has been steadily publishing reports on this. We need whatever information we can get on the cost of caring for AIDS patients, so that we can begin to develop methods for financing the health care services that are going to be needed in the future and the number of patients increases. OTA recently produced a report on this.
We need new guidelines and information on health care workers, how they can safely deal with AIDS patients, so that they can continue to provide care without unnecessary fears, thereby assuring AIDS patients of access to health care, and the
20 CDC, of course, is working on this. On the issues of testing, confidentiality, and discrimination, those are issues that for me will turn on evidence about what is effective in safeguarding the public health.
We've all heard it said that voluntary testing with guaranteed confidentiality of results and protection against discrimination will lead to greater success in detecting infected people and preventing the spread of infection. But I will want to know more about the basis for that assertion. Is there a scientific basis for it, or is it based upon intuition and gut feelings? We've also heard it said that those guarantees aren't needed from the federal government, because they are matters for the states.
Just the number alone is illuminating. What has been done with that? Anti-discrimination laws or AIDS awareness day resolutions? Those are the kinds of answers I certainly want, but I don't think you folks have the time or the resources to get that help for us. And that's okay. I think between the Centers for Disease Control, the National Institutes of Health, the Institute of National Medicine, and the other federal and state offices, and the advocacy groups who are up there on the front lines dealing with AIDS every day, I think we will be able to get those answers. What does that leave for your Commission?
Frankly, I think you are well on your way to performing what may be the most important function of all and which no other body could really provide. You have quickly and obviously become the lightning rod and the focal point for the frustrations and the pain that so many people are feeling right now. I know you are on the hot seat, all of you, and that can't be pleasant, but rather than viewing all the controversy that greets you as a distraction from your work, I hope you can find the strength and the time to plunge right in and soak it up. The most immediate need we have is for information. Information on how you can get AIDS, so that people can protect themselves? information on how you can't get AIDS, so that people don't cling to unfounded fears and hurt each other out of panic and out of ignorance. We need information on where to get the answers, the tests, and the counseling, and most of all, we need to deliver it very effectively
I would like to see you capitalize on the fact that you have become the lightning rod for public comment and dissatisfaction, go out and gather as much feedback as you can, talk to as many different groups of people as you can T and find out what is wrong with the public information that is being put out. Is it just too little of this information? Is it
21 inaccurate? Is it too complex and confusing? Is it not delivered in a way that is meaningful to the groups that are most at risk? What exactly is wrong, and what ideas do people have to fix it?
I'd like to see the Commission gather as many answers to these questions as they can, seek out a very wide variety of viewpoints; let everyone be heard from AIDS victims to employers to parents whose kids attend school with AIDS victims, to health care workers. Don't close your mind, saying that you know what they are going to say. Find out what kind of questions they have, what kind of answers do they want, and where they expect to be able to turn to get them. Give us ideas on how we can put out more comprehensible information, not too technical, not too scientific, just plain clear information.
For example, when people write in with questions about AIDS and mosquitos, we should have something better to offer them than a 100-page technical summary of data from the Office of Technology and Assessment.
A few years back, HHS had a Task Force that worked on making Social Security forms and Medicare forms more easily understandable and less needlessly complicated, more straightforward, and to the point.
I would like some idea on how that kind of goal clear presentation, fast response time could be applied to government dissemination of AIDS information. It would be helpful to hear from insurance companies, health associations who frequently put out brochures and pamphlets, from people who staff community health centers and clinics, who suggest the key points that should be made and the best way to convey them, whether through TV spots or fliers or radio air time or open sessions when questions will be answered.
And finally, I would like to offer a suggestion that should come as a great relief to you, and that is don't even try to distill everything you hear into a consensus statement that you all can sign off on. That is unnecessary.
What I'd appreciate more would be having the Commission gather and share with the Congress as broad and complete a picture of public questions and comment as possible. I hope you won't underestimate the importance and the complexity of this great task.
I am certainly not underestimating the difficulty you will have wading into this sea of emotion and trying to keep your ears open and press for specifics on the people you talk to, but I truly believe this is the greatest service that you can provide. Thank you.
22 DR. MAYBERRY: Thank you. Congressman Conte. We appreciate your remarks very much. We will certainly take them to heart seriously. Are there questions of Congressman Conte? Admiral Watkins?
ADMIRAL WATKINS: Mr. Conte, we seem to be a nation that often is very anxious to remediate. We forget after remediation plans are fixed to reestablish ourself with a preventive plan to look for the longer range. A few years ago we had a commission report out. The President's Council on Fitness, that shocked the nation on the lack of health education and health promotion in our schools. And when the budget cut time came, we dropped these programs in half the grammar schools in the country, for example. We don't test in the high schools, at least half of them. So we really have no health standards now to be used to assume a healthy child and so forth.
It seems to me and I would like to know your views on whether or not as a part of the Commission's effort in focusing on the near term, which is essential, that there also be some recognition of how we take the weapon of education and implant it in our system in any other area related to human biology?
So I am just wondering if there isn't need also for the Commission to focus on longer term objectives that could eventually have a repository out in the system of education as a whole to be able to deal with not only this epidemic, but perhaps things that may come up in the future, that simply is not there today. So when we talk about putting $4OO million into education, I think it is a wonderful concept. How do you implement that, and what if the system has to be looked at? For I don't see how we can get there from here, by just focusing on this one pandemic issue alone.
REPRESENTITIVE CONTE: Well, I think you are on the right track. The only thing I should advise you is that you really have a full platter here. I agree with you, I have been on the committee 29 years, and if you go back and check that record way back 29 years ago, long before this deadly disease came up, I worked with all the institutes on cancer, heart, lung, diabetes, arthritis and all, but I would also spend a great deal of time in the three months that we had with witnesses, questioning the fitness of our young people, and the need for education.
I remember beginning with some of the social diseases and saying what an effect these would have on our society. That's how we stumbled on questioning on AIDS in 1982, when a witness came before us, because I was talking about some of the other social diseases that were confronting our young folks in school. I wanted at that time to, besides putting a lot more
23 money in the budget for research, for gonorrhea or genital herpes or the many other diseases that we had before us, also an education program for our young folks in school to prevent this. I would say that there was no quicker way to destroy a society than through some of these diseases, and they were spreading like wildfire in our junior high schools and our high schools. So I agree with you. I don't know whether your Commission will be able to grapple with this because of the immediate need for you to grapple with the problem of AIDS. Maybe we should follow up with another commission after this has completed its work.
DR. MAYBERRY: Dr. Myers?
DR. MYERS: Representative Conte, I very, very much appreciate your advice to us. You gave us a very concise and clear statement on where you thought our priorities ought to be, and you also told us that we have a very difficult job. I think that probably, sir, you have a difficult job as well, because you are faced with an increasing array of different opportunities to fund programs, that are designed to have an impact on this epidemic, but that as we get more and more into our epidemic, perhaps the programs are of varying quality and varying importance.
Is there anything you see that the Commission can do to help you in your*work on appropriations? You have to make some tough choices sometimes. Is there any aspect of that work that we can help you in?
REPRESENTITIVE CONTE: That's a good question, because right now with the deficit that we have, working under the framework of Gramm-Rudman-Hollings, and with the Administration not wanting to raise revenues, I find, being an old-timer on the Appropriations Committee, it gets very, very frustrating because there is great competition for that dollar out there from everyone, and thank God that in this mark-up we were able to go the full appropriations on research and education on AIDS. As I said, close to $1 billion. Of all the years I have been on that Health Committee, I have never seen anything move up as rapidly in dollars as that. It took us years and years to get the National Institute of Cancer over $1 billion.
So in answer to your question, going down the line. next year I think is going to be even more difficult moneywise with the tight budgetary constraint that we are going to have. Different agencies and different programs, all competing for the same dollar. I think that you could do a service when you make your report. By that time you may have a feel of just what we are going to need in this country to tackle this problem, both in research and in finding a cure, and education, and it would be very helpful to me and helpful to my committee if we had some kind of a figure out there that we could point to.
24 DR. MAYBERRY: Dr. SerVaas?
DR. SERVAAS: Mr. Conte, I wonder, all this about confidentiality, doctors are already in place and trained to be confidential about their patients' health. Have we anyone in Congress working on throwing a lot of the testing, in an inexpensive way, back to the private physicians where they can test and be reimbursed by the government. That's what they did 50 years ago on syphilis, and they asked the doctors, would you test free, and the doctors all said yes, they would, for their patients, and they were reimbursed by the government.
Does anyone in Congress work on the private physicians getting into the testing business? Since they are already confidential in their relationships with patients, and we talk about counselors, but most people who are AIDS-positive should be with a physician to do all the things they should be doing to prevent getting AIDS, full-blown AIDS.
REPRESENTITIVE CONTE: Well, that may be something for your Commission to recommend. In due deference to a fine gentlewoman doctor on the Commission here, I find very few doctors do very little for nothing, but
[ Laughter.]
REPRESENTITIVE CONTE: I think if your Commission would recommend that, it would be very helpful
DR. MAYBERRY: Representative Conte, thank you so much. We appreciate so very much your coming and being with us. We look forward to working with you in the months ahead.
REPRESENTITIVE CONTE Thank you
[Pause.]
DR. MAYBERRY: If we may resume. Be seated, please. Congressman Weiss, on behalf of the Presidential Commission on the HIV Epidemic, we are pleased to have you be with us. We are very pleased to have the opportunity to visit with selected Representatives and Senators, from the House of Representatives and the Senate, to provide input to the Commission on your concerns and aspirations, and ways that the Commission might work together with you for some kind of solution of this problem of HIV epidemic.
It is my honor, on behalf of the Commission, to introduce Representative Ted Weiss who, as you know, is a Democrat from New York. This is his sixth term in the House. He is a member of the House Committee on Government Operations on
25 which he chairs the Subcommittee on Human Resources and Intergovernmental Relations. He has a strong interest in AIDS and has held a number of hearings on AIDS, on issues ranging from funding for education and information programs, to AIDS counseling, testing and research. He is also an active member of the House Select Committee on Children, Youth and Families, a committee with a strong interest in AIDS and babies, children and teenagers. Congressman Weiss, welcome.
REPRESENTATIVE WEISS: Thank you very much. Dr Mayberry.
Mr. Chairman, members of the Commission, I very much appreciate the opportunity you have given me to testify before you today.
As you have indicated, the subcommittee which I have chaired since January of 1983 has held, I think, some eight hearings during that time trying to focus on all the various aspects of the AIDS epidemic, and what the federal government especially ought to be doing to respond to the crisis.
I brought with me copies of the reports and transcripts of the hearings, as well as the study of the Office of Technology Assessment that was done at our request, which I will leave with you for whatever use you may care to make of it.
I also have a prepared statement which I am going to submit for the record and just speak to highlight some of it, with your permission.
[The submitted testimony of the Honorable Ted Weiss follows:]
26 REPRESENTATIVE WEISS: As you know, there are at this point some time this week we will reach 42,000 total number of AIDS cases that have been diagnosed, but that is really a small percentage of the number of people who have been exposed to the virus, who have AIDS-related complex, and members of families of the people who have it.
We are told that by 1991, conservatively, there may be as many as 270,000 people cumulatively who have been diagnosed with AIDS. And so you are really dealing with an epidemic crisis, a health crisis, which may be worse than anything we have ever faced in this country. I think that whatever constructive contribution you may make in helping to deal with that problem is certainly something very significant and important.
It has been our experience that starting from the very beginning and we held our first hearing in August of 1983 there was barely any recognition, either within the federal government or within our society at large of the existence of the disease. Our big problem was trying to get some sense of urgency about it.
We found from the start that the professional public service people the career people in the national Public Health Service have been aware of the problem and have wanted to focus more and more resources and more and more attention to it. The problem that we faced, I think, really came from the political part, the policymaking part of the Administration, for whatever reason because of budgetary problems, because of a conservative social agenda, because of an unfounded notion that AIDS would only affect a small portion of our society. There was just not the willingness to really treat this problem as other public health epidemics have been dealt with over the course of our history.
So if there is any one real basic message that I would with y°u, it is that we really have to find some way of and you, I think, can play a very important role in that of returning the management of the federal AIDS program to the Public Health Service professionals, and let them be the leaders, as they have been in every other public health problem or crisis over the course of these past 100 years, rather than having political or budgetary judgments imposed upon them.
We have had the experience over the years of getting from the Public Health Service people originally those numbers which were imposed on them by the budget people, and then we would, after laborious examination, we would get from them the figures which they have submitted to the Office of Management and Budget. And invariably - and this is, I think, quite important Congress, with all of its shadings of opinion, the cross section of representation that it has, has always responded by
27 giving the Centers for Disease Control, for HHS, all the various agencies that deal with this problem,, that which the professionals requested. I think it demonstrates that as far as Congress is concerned, it wants to rely on the professionals, and it doesn't want political judgment or numbers judgment to be made.
We have found every year that ~the Administration would request for the following year significantly less money than that which Congress had appropriated the year previous. That should not be the case. Really, the administration of the Public Health Service ought to be allowed to provide the leadership.
Now there has been, I think,, a tremendous increase in funding over the course of these past six,, seven years, from something like $200,000 originally in 1981, to the likelihood that for fiscal 1988 the Congress will be appropriating very close to $1 billion.
What that does is to indicate that as far as the research funding is concerned, we have come pretty close to meeting the amount that the professionals in and out of government have said we are going to need.
The area where we have not done well enough has been in the area of education. We have received all kinds of promises from the Administration as to how they are going to spend money on education. Congress, as I said, has been willing to provide more money than they have asked for, and we found year after year that (a) they don't ask for enough money? (b) they don't do what they are going to do, they don't institute the programs? and finally, they don't spend the money we appropriate for them. And that is especially a problem now when, as you know, and I'm sure you have heard, the only game in town really is education.
We have one drug which seems to be effective at this point as a therapeutic agent. The vaccine, if it ever gets developed, is a long way down the line. By that same 1991 date that I cited before, we will have in that single year probably 75,000 new cases developed. Half of those cases probably will be people who already are carrying the virus. The other half are people who are going to be contracting the disease some time between now and then. And that half 37,000, 40,000 people, perhaps more perhaps could be reduced significantly if in fact we undertook a massive education program. But it is just not happening.
Some time in March, I guess, when the subcommittee had one of our hearings focus on education, on the very eve of that hearing, the Department of Health and Human Services announced its great education plan and proposal and outlined what it was going to be doing by various times. It was going to have a
28 national mailing, but it would await its final determination as to what that mailing would consist of until the Commission your Commission was going to be appointed, and then they expected that you would be able to come in and make a decision on that by the time in October that AIDS Awareness Week would arrive.
Well, obviously for any number of reasons, you have not been able to reach that stage yet. But I don't think that it made any sense to put you in that position of giving you an assignment before you were created and then put this artificial deadline in there. The fact is that AIDS Awareness is not just a one-month problem, it ought to be a constant, ongoing problem.
As of now, there seems to be a discussion or suggestion emanating from the White House that perhaps they will not have a national mailing after all. It just doesn't make any sense at all to proceed that way.
A recent study of 169 hospitals shows that Medicaid pays for 54 percent of the AIDS patients; private insurance, 17 percent? and the remaining 20 percent are indigents. And so we have a real problem as to who ultimately is going to pay for some of these problems. It is burgeoning, and I think one of the real problems that has not been focused on is the fact that our health care facilities are going to be just swamped.
Even now, in our major centers, where the epidemic has so far been most rampant, the hospitals and other health care facilities and the health care professionals themselves, have reached pretty close to their limit. If you think ahead to 1991, and the numbers that I have suggested, I don't know where the health care facilities will be, or the health professionals to take care of all the people who will by that time be suffering from this disease.
If you started this moment, I don't know if you would be able to create sufficient facilities or train sufficient health care personnel, personnel and supportive services. There has been next to no attention paid to that problem, and I think that you could be playing a very important role in creating a sense of urgency about that. Because if it's not done by 1990, 1991, there is going to be just absolute chaos out there.
So I think that is an important area for you to work on.
It is also a very complex problem because we are spending much more money, and we will be spending much more money than needs to be spent, because there is nothing available in most places as a way of providing for long term care outside of the hospitals themselves. And so we find in New York and
29 elsewhere in this country, where we may be spending $7OO a day to care for patients who could be cared for for $75 or $lOO in other than acute care facilities. And so it seems to me that is an area that you are going to have to address.
And then, finally, an area that has concerned us is the lack of coordination that exists. You are going to be expected to make your reports, I guess, by June of this coming year, and then you will be going out of business, and hopefully with the appreciation of all our society, never mind government, for the contribution that you have made. But the problem obviously is not going to end. And there really ought to be a professional group outside of government which can make independent judgments and recommendations as to how to coordinate research and education in the various other elements that I spoke about.
Without that, I think you are going to find that we will still be looking to fill gaps long after there ought to have a coordination undertaken.
I think that is probably enough by way of my talking at you. I would be pleased to try to respond to whatever questions you may have.
DR- MAYBERRY; Thank you very much. Congressman Weiss. Dr. Crenshaw.
DR- CRENSHAW: Thank you for your comments, particularly relating to the lack of preparedness in medical facilities, and I just might say that with slightly over 500,000 physicians and 1.3 million hospital beds in the nation, everybody needs to listen to what you are saying there, and do something.
The question I have relates to families and children. In terms of the projections, the clinical diagnosis is the tip of the iceberg and there are many infected people. Eventually, perhaps it becomes symptomatic.
What figures do you have for the individuals infected in the teenage population and what are the projections among teenagers, the ultimate high risk group with the other sexually transmitted diseases like Chlamydia, that are quite prevalent in sexually active teenagers? If they are the preview to what we look forward to, what are your thoughts on that?
REPRESENTATIVE WEISS: Again, I think it is an extremely important area for education. I don't have any numbers. At this point, I think the numbers are relatively modest, or the percentages of the overall caseload are relatively modest. I think you are quite right. We have the high pregnancy rate among teenagers. We have had statistics indicating that by the age of 17, some 50 percent of teenagers
30 have been sexually active and that by age 19, the numbers are in excess of 70 to 75 percent.
You are quite right. The field is there for the spread of this disease unless our young people are impressed with the knowledge as to why they really have to behave themselves in a responsible way and they have to receive all of the moral and scientific information that we can provide them to encourage them in fact to carry on in such a fashion as to provide the best protection for themselves.
DR. CRENSHAW: lam under the impression from what I have been able to glean, looking into it thus far, that the way the statistics are kept, we don't have precise figures on cases of AIDS in teenagers specifically or the antibody positive. Please correct me if I am wrong.
REPRESENTATIVE WEISS: I don't have any figures either. We have a very large runaway problem that ends up being our problem in New York City, kids from across the country find themselves attracted to New York and I guess other large cities as well in the country. Many of those young people, children, find themselves out on the street and being forced into prostitution, becoming intravenous drug users.
Other than just the normal problems that teenagers will have, these young people become really tremendously at risk for other kinds of activities which they ultimately become engaged in. I think it is a group of our society that we have to be very, very concerned about.
DR. MAYBERRY: Congressman Weiss, thank you very much. We appreciate your coming. The Commission looks forward to working with you.
REPRESENTATIVE WEISS: Thank you. Dr. Mayberry, and members of the Commission.
DR. MAYBERRY: It is now my pleasure to introduce Representative Jim Lightfoot. Republican from lowa. Congressman, we have finally gotten around to one of the real states. That is spoken like a Minnesotan.
REPRESENTATIVE LIGHTFOOT: Yes, I appreciate that.
DR. MAYBERRY: Ranking Minority Member of the House Government Operations Subcommittee on Intergovernmental Relations and Human Resources, also a member of the House Select Committee on Aging. Welcome. The Commission appreciates the opportunity to hear input from you and looks forward to the opportunity to work with you in the months ahead.
31 REPRESENTATIVE LIGHTFOOT: Mr. Chairman, I appreciate that. We appreciate the opportunity to meet with you folks this afternoon.
As you have mentioned, I am on the Human Intergovernmental Relations Subcommittee, of which Mr. Weiss is the Chairman. I think we have offered kind of an interesting balance on that Committee, as he is from New York, a very urban area, and lam from lowa, which is a very rural area. I think it has given us an opportunity to work together and compare ideas and really try to offer a balance to a lot of the things that we are doing.
The spread of the HIV virus is something that is undoubtedly public enemy number one at this point in time. If left uncontrolled, the virus is going to create a lot of serious problems not only for this nation but for the world as a whole. What you folks are doing is extremely important.
There is at this point in time a group of people that are highly susceptible to the virus, but I think we all will have to admit that the virus really knows no boundaries and has the potential of attacking many others who do not take adequate safeguards.
That makes your job very, very serious. I encourage you to review the literature which has been published and to listen to those who have spent considerable time examining the problem. There is an urgency involved in your task, but at the same time, I hope you don't leave any stones unturned and that you will deal with all the issues, including those that are the most controversial. They are sometimes difficult to handle but I feel that the Commission is in a position to do that.
There are several areas that I think deserve your attention and very briefly, I would like to list them for you. It is important that we separate fact from fiction when we discuss the AIDS virus. Too many people know too little about the disease. We find many Americans are unaware of how AIDS is contracted. Many have misconceptions about it. I think we need to take steps to ensure we don't have a mass hysteria on our hands because of misinformation. People need to learn more about the disease and how they can take precautions to reduce their risk of exposing themselves to the virus.
Education, I think, is the key word and is very important. This will be a difficult job. We will discover, I think, that what may work in New York City isn't going to work in Shenandoah, lowa and vice versa. What will work with educated young Americans probably will not work all that well with drug addicts and high school dropouts.
32 The message will have to be tailored to the group for which it is targeted. Although I believe the federal government can play a very strong role in the dissemination of this information, our communities and schools are going to have to play a very critical role in delivering the message.
Local communities and schools with active involvement and consultation with parents I think are best able to determine who are most at risk in contracting AIDS in their communities and how to reach that particular audience. I think we need to also increase our search for a vaccine for the virus, I understand it is really many years away. You folks in the medical profession can answer that much better than I. In the meantime, I think the Food and Drug Administration should be encouraged to allow for the experimental use of promising but not yet approved drugs for the treatment of AIDS patients. Although I think we need to make very certain that FDA evaluation of the drugs to determine their sa f e We also need greater coordination among different agencies of the federal government and among federal, state and local governments. We need to battle the problem together, as a group, and to use our resources effectively. We need to use the talents and strengths of each of the agencies and each of the levels of government in order to deal with the problem. I think we should eliminate overlaps among the different agencies and make sure agencies are not working at cross purposes, which we find too often. Furthermore, the federal government should continue its role in providing state and local governments and organizations with information about the spread and control of the virus. Finally, I hope you will examine the role of the private sector in fighting the AIDS virus. Already, we find many private non-profit organizations have opened their doors and arms to care for the AIDS victims. I think these organizations and groups can be very critical as a component in the overall formula and our efforts to stop the spread of the virus. This country was basically founded on the spirit of volunteerism and out in our country, we used to have barn raisings and so on, and even to this day, you will find when a tragedy strikes, a farmer has a heart attack, his neighbors come in and help tend the crop and so on. It is just the kind of thing we do. It would be very unfortunate, I think, if we ignored the role that volunteers and volunteer groups can play in helping us deal with this very serious public health problem. As a Ranking Minority Member on the Government Operations Human 33 Resources end Intergovernmental Relations Subcommittee, I plan to work with Mr. Weiss, my distinguished colleague from New York. He has been one of Congress' most active members on the issue. He has been a strong leader in addressing the AIDS epidemic and I commend him for his interest and leadership. Thank you for giving me the opportunity to testify here today. I look forward to working with you, individually and as a group, as we continue to work on this problem. I would be happy to respond to any questions you might have. DR. MAYBERRY: Thank you very much, Congressman. Dr. SerVaas? DR. SERVAAS: You mentioned volunteers. Volunteers working in the private sector on testing. New York laws make it impossible for volunteers to come to New York and do testing, I believe. Do you see some dangers in some of the legislation that is now being proposed, like the Waxman bill, that will prevent volunteer testing with physicians? Is it true, like in New York, commercial labs can't do testing, can't do the ELISA test, in New York State? REPRESENTATIVE LIGHTFOOT; I can't respond to that, because I don't know what the New York State law is. I think the stance we should take here at the federal level is to be very certain that we do not put something in a federal statute or a federal limitation that basically violates states' rights and puts a federal mandate on the states. I think those decisions need to be made at the state level. That is a very good example, as mentioned earlier, the situation in New York City. Undoubtedly, it is entirely different than it is in my State of lowa, and even within the communities within my own state. I think those decisions need to be made at the local level. Our role should be providing the people who are willing to work in fighting the disease with the tools they need and not get in their way with a lot of bureaucratic red tape and so on. We had a hearing on the FDA's handling of some of the potentially helpful drugs for AIDS. You get into some very serious arguments there, because if you follow through on standard FDA procedures for testing a drug, which takes about 9 years and it costs the company roughly $lOO million in round figures to get a drug on the market, in the laboratory analysis, there has to be a control group. Do you then get a group of people who are infected with AIDS, the standard procedure would be to give one or two of the people as a control measure a placebo, while you are treating the rest of that group. Is that morally correct? There are a lot of questions to be answered in that particular area. 34 DR. MAYBERRY: Congressman, we really appreciate your coming. There are a lot of detailed questions that are going to be difficult to answer and we are going to be working on them with you in the months ahead. Thank you so much for your willingness to come and share your thoughts with us. REPRESENTATIVE LIGHTFOOT: Thank you. DR. MAYBERRY: At this time, it is my great pleasure to introduce Senator Lowell Weicker, Republican, from the State of Connecticut. Senator Weicker has served in the Senate since 1970. He is the ranking minority member of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. He is also a member of the Labor and Human Resources Committee, where he is the ranking minority member on the Subcommittee on the Handicapped. He is extremely supportive of biomedical research and of many AIDS related activities, including information and education programs. He was the driving force behind the 1987 supplemental appropriations of $3O million to provide for AZT, a retrovirus for patients, who cannot afford to pay for the drug or whose insurance will not cover it. Senator, we are so appreciative of what you and your legislative aide, Ms. Maureen Byrnes, did to arrange for our facilities here and to make this meeting on Capitol Hill possible. SENATOR WEIKER: Dr. Mayberry and members of the Commission, thank you very much. I apologize, number one, for my tardiness. On the floor of the Senate, we are discussing a war of a different kind in the Persian Gulf, not that this one is any less important. Indeed, I think both indicate the greatest threats to the security of this nation and I think both are equal in their threat. I appreciate the opportunity to meet with you today to discuss the federal response to an epidemic that has thus far killed 24,400 Americans, and threatens the lives of thousands more in the very near future. At the outset, I should say I did not support the creation of a presidential commission, because I was concerned that such a commission might delay or even worse derail the actions of our public health officials and scientists. Unfortunately, my fears appear to have been realized. Discouraging have been the reports of power struggles and dissent within your ranks. I don't think we can allow partisanship or bureaucratic infighting to stand in the way of federal efforts to face up to the AIDS crisis. Today your Commission has yet to prove that it is not merely an extension of the far right moralizing this Administration has employed as its first line of offense in the 35 AIDS battle. I also know the quality of a person that sits on this Commission and I have no doubt that you have within you, both the knowledge and the courage to inform the American people as to what needs to be done. In that regard, I was glad to facilitate whatever needed to be done in this public hearing. Let me also assure you if you need a blocking back on the legislative front, and I mean just that, you have the brains in this fight and I will try to use the weight both literal and political to make your job easier. We know what needs to be done. The surgeon general has repeatedly outlined the nature of the AIDS epidemic and the steps we need to take to address this health crisis. The Institute of Medicine has recommended effective measures to limit the spread of AIDS and respond to those who are already infected. The Congress has consistently doubled the Administration's budget request for AIDS to provide the dollars needed to allow our scientists at the National Institutes of Health and Centers for Disease Control to move as quickly as possible toward understanding the nature of the AIDS virus and to develop drug therapies and a vaccine for AIDS. Congress has also taken the initiative to ensure that there is adequate funding for education and prevention programs, as well as model programs that will provide the comprehensive medical and support services for those who are sick and dying of a disease that robs people of their jobs, their homes, their friends, their family and all too often, their dignity. There has not been a lack of information or recommendations from the experts in public health and biomedical research. What has been lacking is a willingness by some to make decisions and policies based on the information we have from men and women of science. AIDS is not a political matter. It is a public health crisis and the greatest contribution the Presidential Commission could make to this crisis would be to focus the country's attention on the public health responses that are so desperately needed. The most important thing this Commission can accomplish is to prove to all sides of the AIDS debate, those seeking to hide their heads in the sand, the advocates of persons with AIDS and those dying from the disease, that you will approach this gravest of medical threats in a non-partisan manner. One question you should seek an answer to is what has become of the $2O million Congress appropriated to prepare and distribute an AIDS booklet to every household in America. I want to know the answer to that. Who made that decision? Why was it made? I know for example that in the AIDS legislation which passed the Senate Committee, my attempt to make sure educational material was distributed to all of our school children, in the 36 most explicit way, was blocked because it was considered offensive. Isn't that too damn bad! If it was my kid that was getting shot at in a shooting war, I sure as hell would tell him it was going to kill him, if I wanted my children to live. This is no different. Our children should know everything, to keep them alive, without any moralizing by those who don't know any better. Meanwhile, in all parts of our country, ignorance, not to mention vigilante injustice, is having a field day. In Florida, children with AIDS have to get a court order to attend school and then their home is mysteriously burnt to the ground, and never once did I see the Governor, the Superintendent of Education or anybody of prominence stand up and decry that kind of activity. I dare say it is not a matter for Florida, the same would happen in all 50 states, believe me. The leadership wants to hide. That is exactly why your Commission must fight, you have to fight to overcome ignorance, In the community at large, in the Administration, and yes, right here in the United States Congress. Just a few hours ago, the Senate was engaged in a debate regarding efforts to single out this one disease as an emotional red flag, in this case, to restrict the sovereignty of the government of the District of Columbia. They have a law on their books relative to AIDS and insurance, which received the total focused attention of the United States Senate. You tell me, number one, what other state in the Union has the United States Senate gone to, to investigate their insurance laws, and number two, what other disease in what other state have we singled out for attention by the United States Senate? It was just another occasion to red flag this tragedy. The problem is clear. We are faced with a disease that is killing thousands. I think our response must be the same response we have always made to anyone in this country. How can we help those who are sick. How can we prevent others from ever experiencing the pain and suffering associated with this disease and any other disease that threatens our lives? Since when in this country did we start asking people how they got sick? We have every age group represented in this room. When can anybody remember up to this point in time, when we asked how you got sick before we determined what we were going to do about it? Never in my memory, either as a child growing up, as a student, as a lawyer, or as one in government, ever have I heard the questions asked that I have heard asked about this disease. 37 It is the moralizing, some moral judgment, that we are going to all of a sudden apply, before we give the right answers as a government on this particular disease. Everyone wants to know how much money are we spending on AIDS. Has anybody asked how much money we are spending on syphilis or gonorrhea or any other venereal disease that is associated with the If straight practices" of the nation? It is staggering. I never heard the question asked. I would have been just as insulted over that question as I am about this question. Always in the past if someone needed our help, we responded. Do we judge those who suffer from cirrhosis of the liver from too much drinking? Do you want to get that tab out? Do we judge those that suffer from lung cancer because they smoke too much? Do we judge all those who need treatment from other sexually transmitted diseases? Our response has always been to treat the illness, not to moralize about how the illness may have been contracted. Treating AIDS is going to be expensive. Developing a cure will be expensive. Preventing further spread of the disease is going to be expensive. It is going to cost a lot of money and we had better come to terms with that sooner than later. I see a lot of money spent on the business of death. Surely, no one would suggest we cannot afford to spend what is needed on the business of life. We need research dollars, dollars for basic research as well as applied AIDS research. It helps no one if you increase AIDS research only to cut funding for basic biomedical research, as the Administration proposed in its original fiscal year 1988 budget. That is up to the medical community to explain to America. That is a pretty sophisticated concept. I'm not a medical man. It took me years on the Appropriations Committee to learn what was going on. You know, those of you who are men and women of science, to go ahead and say you are going to increase AIDS funding by $lOO million and cut basic research by $6OO million, means you are actually reducing the money spent on AIDS, while you are trying to reap the political benefits that come with the general statement, we are increasing AIDS money. We need a large scale education and prevention program which reaches as many people as possible and one that reaches a variety of age groups in a variety of ways. We need to be preparing for the enormous health care costs associated with AIDS that we will be faced with in the next few years. We are beginning to experience these costs now and the bill is only going to get bigger. Compassionate, cost effective health care 38 programs and systems must be developed if we are to provide care for the thousands that need our help. As I said, I did not see the need for this Commission at the outset, but I have not meant to express criticism. I wish the same were true of others. It is a time to work together, not to accuse. I think you should have lively debates among yourself as to how we get on top of the problem. That's what we have here in the Congress. The time is very short and what is left can't be used to frighten but rather it should be used to cure. I would hope when you go back, your number one recommendation to the President will be, Mr. President, only one person in this nation can lead this fight and that is you. It isn't Congressman Waxman, Senator Weicker, Senator Kennedy, Dr. Mayberry, Dr. Mason, the President of the United States, the same President who asks to lead the fight in the Persian Gulf, has to lead in the fight against this disease. I thank you very much. DR. MAYBERRY: Senator, thank you very much for your time. Would you have a couple of minutes for questions from the Commission members? SENATOR WEIKER: Of course. DR. MAYBERRY; Dr. Walsh? DR. WALSH: Senator Weicker, if we agree with you more or less on the principle on your feelings on the explicitness of education, because we are in a war and people have the right to know they are going to die. What I am troubled with is how do you equate that then with the very difficult issue with which we are faced, and that of confidentiality, when the seropositive individual is carrying the smoking gun? If we are trying to tell children about AIDS and how they get it and so on at very tender ages, and you feel they must have all this information because we are in a shooting war, what about the people who are carrying the weapons that will deliver the death sentence to those with whom they have sexual relations? Namely, the seropositive patients. The biggest problem that we are facing, one of the problems, is the preservation of confidentiality, anti-discrimination and the like. It seems to me if it is a shooting war, this poses a philosophical problem. SENATOR WEIKER: I think they are two really different tasks we are talking about. The matter of confidentiality clearly does have to be addressed. lam as sensitive as you are and every member of the panel to constitutional rights. At the 39 same time, I think we have to understand what you posed in your question, the danger these people pose. That is an answer we are seeking now in the Congress as we try to address this matter legislatively. It is not a matter that we have ignored. Ido separate dissemination of educational materials to the matter of confidentiality. I think those are two entirely different matters. DR. WALSH: Do you have any recommendations for us on this? If they in truth are carrying the smoking gun and the weapon, how do we equate confidentiality? SENATOR WEIKER: I will be glad to submit to you for the record both the legislation and my remarks addressed to the legislation as it addresses the subject you are talking about. DR. MAYBERRY: Dr. Lee. DR. LEE; Senator Weicker, you are in great form. It's a pleasure to hear you today. In the last two months I have been beaten up on by all of the gays in Greenwich Village and minority group members, drug abusers, and yet you have done the best job today. Et tu, Lowell. SENATOR WEIKER: I think the Commission should know that I have known this member for an awfully long time, as he has known me. So believe me, there is no confidentiality as between the two of us. DR. LEE; I wanted to also say that I played football with Lowell when we were 10 and he was a fantastically good blocking back. I wanted to reassure you I have no questions, but I wanted to reassure you from everyone on the Commission with whom I have spoken, that we want to very strongly support the NIH, the CDC, the Public Health Service, National Academy of Sciences. It is my hope that we will strongly support all of these reports and that they will form the basis of our report, and that we will in some way be able to unify this fight and live up to your expectations. SENATOR WEIKER: I figure, Burt, you devoted a whole life to saving people from the hurt of cancer, and believe me I was just delighted when I saw that you were put on this Commission to take that energy and that ability and give it to the people now suffering from AIDS. DR. MAYBERRY: Are there other questions? [No response.] DR. MAYBERRY: Senator, thank you again for arranging this. 40 SENATOR WEIKER: Thank you very much and thank you for your patience and a strong letter follows. DR. MAYBERRY: We look forward to working with you in the months ahead. We want you to come back next time and tell us what you really think. [Laughter.] DR. MAYBERRY: If we may, we will resume our meeting Congressman, we have been telling each of you who have come to visit with us today how grateful we are for the opportunity to hear your thoughts and concerns and aspirations for the Presidential Commission. And it's my honor at this time to present to you Representative Charles Rangel, Democrat of New YorJc# he is in his ninth term in the House where he represents New York City. His District includes Harlem and other areas wheire AIDS and drug abuse are major health and social problems. He has been a continuing strong proponent of anti-drug abuse programs and increased funding for drug abuse treatment, and rehabilitation as well as prevention and education. Re has introduced several major pieces of legislation related to AIDS including a recent bill to authorize significant additional federal activities directed specifically toward drug abuse and AIDS. He has held a large hearing in June at the Harlem Hospital where city, state and national leaders including Surgeon General Koop discussed the problem of pediatric AIDS, including the problem of hospital boarder babies. He chairs the House Select Committee on Narcotics Abuse and Control. And during our visit to New York City he was very helpful to us in making the arrangements and making that visit went smoothly and very productively from our standpoint. Congressman, it is indeed a pleasure to welcome you to a visit with the Commission. REPRESENTATIVE RANGEL: Chairman Mayberry, I hope that I could have permission of the Commission to insert my prepared remarks into the record and just to highlight some of my thoughts. DR. MAYBERRY: Please do, sir REPRESENTATIVE RANGEL: Let me take this opportunity to thank each and every one of you that have taken time out of your professional lives to devote time to your nation and the crisis that the world is facing; for coming to visit my community to 41 make certain that when your final report is prepared that you would have at least been able to look at all aspect of this deadly disease that's infecting our nation. And a very special thanks to Dr. Burton Lee who, over this weekend, shared his thoughts and listened to the views of others as to the connection between IV drug use as it relates to the minority community, as it relates to the poverty that we have had. As early as 1961 when I was a Federal Prosecutor in the southern district of New York, dealing specifically with prosecuting narcotic cases, it tragically came to my attention how the poorest districts in the southern district is where the concentration of drug addiction existed. At that time in the early '6os it was commonplace to hear of drug overdoses as our municipal hospitals would see, indeed youngsters coming in that had either killed themselves or were in the process of harming themselves beyond consciousness. And the connection between poverty, the homelessness, joblessness, and the dependency on drugs, I think scientifically and medically has been well established. I left the Prosecutor's office in an effort to focus attention on this as a legislator. And for the last 25 years as an elected legislator, 17 of those being in the Congress, I have tried not only to deal with the ever growing drug problems that burdened us, but also some of the causes that find people depending on drugs. I have tried in my little way to show the connection between our national security and our balancing the budget, and showing how family units were being broken. How kids were being left for foster care. How there were sharp increases in crime. How there was a swelling in the need for police. How our jails were just being swollen as we housed those people who had been rejected. How there was no rehabilitation education that existed in our prison system. And how there were no communities that could deny that we were turning into the streets people who were more damaging to society than those people that we put into prison in the first place. Politically we have found that it is much easier to sell bonds to build prisons than it is to pass programs that would prevent young people from entering the life that would lead them to prison. And yet, year after year, no matter what meager efforts were made by local and state governments and the United States Congress, with the exception of the President Nixon years we have found not only sharp increases in the amount of opium and marijuana that was being produced, but also found that the tonnage had increased in coming into the United States, and the drug abuse population was increasing. 42 Now comes cocaine which joins the arena of the IV heroin abuser and marijuana abuser which causes the population to explode beyond that of the inner city walls into suburbia, into our rural areas, and the tonnage has doubled in the last decade as is estimated by the State Department to find 2 to 300 tons of narcotics pouring across our borders without a strategy, without a plan, without any hope that this amount ia going to be reduced. And even if we take the wildest expectations and reports as to what we have confiscated, there is nobody in this government of ours that can say that any of the seizures have reduced by one ounce the amount of drugs that are available on our streets. One would think that the Select Narcotic Committee which I am privileged to have a bipartisan relationship with members of Congress. We have been together now for eight years. I don't consider Ben Gilman as the Republican or Minority member; he's a co-chair and my partner in this. I would never have assumed the chairmanship of the committee if he did not agree to assume the role from the Republican part of the House of working with me. We have yet to have a partisan dispute on this committee, even though the record would not allow me to place all the disputes we have had politically outside of our committee work. And yet, we never thought that the problem could worsen, that would have us going into hospitals looking at the number of infants that were being born with AIDS where close to 90 percent of them, nine out of 10 of them had AIDS because they were either their parents was either a drug addict or had sex with a drug addict. We never thought we would have to look into the foster care system to see why good people are running away from children that their parents either abandon or irresponsible and can't assume their responsibility. With all of the Standing and Select Committees in the House that deal with the family and homelessness, we never thought that we had to look into the area to see how the AIDS virus was being festered in communities that were popularized by heroin addicts. Nor did we think that prison reform could ever come on our list until, as Dr. Lee clearly heard, that we find the homosexuality that's in our prison, the IV drug abuser in prison with access to the heroin, not being tested, not being treated, being released as a rolling time bomb into the community, having and picking up on their normal sex habits, spreading the virus with people who unknowingly or uncaringly will receive the AIDS virus. We just don't know how far we can go in trying to impress upon anybody that this is not a local and state problem. We have attempted to make it a national problem, but as we have gone overseas we have found that 60 percent of the heroin abusers are carrying the virus. We have seen in the most permissive 43 country that we have been to in the Netherlands that they now have people in the street dealing with their prostitutes and their drug abusers because they know that the AIDS population is exploding in their country. We know that the second largest cause of AIDS is IV drug abusers. We know that over half of the females involved is because of IV drug abuse. And yet, I laud the challenge that this committee has taken, because you don't have the political restrictions that Republicans and Democrats two year holders of office have in the Congress, where we don't have the political courage to find out what is wrong in this world, what is wrong in our nation and to reach out and try to do something about it. I'm not talking about what creates these communities where there are no federal housing programs, where we're not involved in any educational federal efforts to educate that we're prepared to yield to foreigners who are more competitive because the inner cities are not producing populations for multi- national or national corporations to be successful and be competitive. I'm not talking about getting the federal government involved in reducing local and state crime. My God, we have got more policemen on Capitol Hill with our Capitol Police than we have got in the entire National Drug Enforcement Administration here and abroad. What I am talking about is that, if this or any other Administration is prepared to say that they don't want to get involved in dealing with the poverty, their, hopelessness, the helplessness that a large segment of their community has, even though we're prepared to look at it with the stain as to creation of Communism abroad, how in God's heaven can we say that where all of the cocoa leaves and all of the opium that is being grown, none of it in the United States, that this is a local and state problem. You may say that you challenge me to say that that's the position of this Administration. And I will say, I challenge you to show me where our State Department through a Secretary of State has ever said anything different. And I admit that I'm puffing it up a little bit because I know that none of you, as none of us, have ever found a public statement of the Secretary talking about these countries that thrive on the production of opium, marijuana and heroin. And even when Ben Gilman and I passed legislation which was signed into law providing sanctions against these countries the only voices we heard from this Administration concerning the Rangel-Gilman amendment to the Foreign Assistant Bill was Attorney General Meese and Secretary of State Schultz saying that they did not believe in sanctions. 44 Assuming that is not the way to go, as we went to embassy to embassy around the world we found it difficult for some of the people in these embassies to know who the Assistant Secretary of State was for International Narcotic Affairs. And further than that, I sometimes challenge in the United States, but who can tell us who is the Assistant strike that out Special Assistant to the President with offices in the White House, for the last seven years that specialty is just advising the President on narcotic matters. I asked people in the Congress. I asked law enforcement. I asked people in the health industry. I asked people in Foreign Service. Of course, it's Dr. MacDonald who has other responsibilities. But don't be embarrassed if you don't know him. He has only been there for six months. You should want to know who was the person that was there for the six years before Dr. MacDonald. It was Dr. Carlton Turner. I'm not saying that they did not do a wonderful job; all I'm saying is that, should not with the crisis that we are facing someone know what they're doing. Customs have said through Commissioner vonßaab that they cannot control our borders. It is clear that the DBA with 2500 men cannot provide the job of law enforcement under local and state community, and yet the Attorney General would say that local and state should not receive one nickel for courts, for prosecutors or police of federal money because it's a local problem. I suspect that all of us will end up saying, well, if you can't deal with that as a source, you can't protect your borders, that even though the President says it's a question of national security and national defense, and you don't hear from the Secretary of Defense on this. One might suspect, and you have to prevent it and you have to educate people. And Secretary Bennett has made it abundantly clear that the national policy as it relates to drug prevention and education is adopting the First Lady's policy of "Just say, no.” But where you find an abuser in the school system, kick them out. I don't have any problem with that get tough attitude. But you ask the Secretary, "Well, what can we do before they abuse? Can we educate and prevent?” Of course you can, but that's local and state. Well, you say, "Suppose they didn't do a good job and you kick them out." What about rehabilitation? What about a federal program? What about the National Institute of Drug Abuse? Can't we give them a program, if not in dollars and cents, at least a model. No? that, too, is local and state. And so, when you find me strongly supporting this Commission it's because unlike elected officials and politicians, you don't have 45 anybody to threaten your security, you are secure enough to assume the responsibility as Commissioners. And I don't have to challenge you to report to the President the causes of AIDS. You can't avoid this epidemic that has hit my community. Maybe some of the staffers might give some of the reasons as to why people are dependent on IV drugs; I don't know. Maybe you go into the reasons why people engage in homosexuality; I don't know. But I know one thing, that we in the Congress are able to welcome whatever you do to focus attention on a threat which I truly believe is more serious to the security of my country than Communism. I fought them in Korea in 1950 and haven't found a Communist in my block or in my community since. But the deaths that I have seen. The lives that have been destroyed. The human beings that we've given to the prison system. The lives that cost $6OO to $l,OOO a day to keep alive in the hospitals with these infants that are going to die; what is happening and generating in our prison system; where my church says don't distribute condoms, God bless them, but with the chaplains, "See no evil, talk about no evil," and don't know how AIDS are being spread in the prisons either through the distribution of heroin or through homosexual operations or through sodomy, sometimes with the cooperation of the authorities, all I can say is that, forget the church, forget the politician and we are now relying on you to report to the President of the United States and the leader of the free world as to how serious is the problem and what causes it. After you do that, I think perhaps we will have the courage to try to come up with some program to cooperate with this President or any other President to save our nation, and through this leadership, perhaps, some other parts of this great wonderful world that God has shared with us. Thank you. DR. MAYBERRY; Thank you very much, Congressman Rangel. Would it be all right with you if we go on to Congressman Gilman and then maybe take questions and answers after he makes his comments. REPRESENTATIVE RANGEL: I wouldn't have it any other way. Ben Gilman has been a real partner in the state legislature with me when we both served in the New York State legislature, and my load has been lessened a great deal by having him with my Republican friends share responsibility. DR. MAYBERRY; Thank you so very much. It is my pleasure now to introduce Representative Benjamin Gilman, Republican from New York. I can say that the spirit of bipartisanship that exists between you and Mr. Rangel, Mr. Gilman, has been exemplified all day relative to this serious problem; and it is one of the things that gives us a lot of encouragement about our job as a Commission to work with you. 46 This is Representative Gilman's eighth term in the House. He serves on the House Foreign Affairs and Post Office and Civil Service Committees, the Select Committee on Hunger, and is a ranking minority member of the Select Committee on Narcotics Abuse and Control. He has worked closely with Representative Rangel as he has indicated on the Narcotics Committee on issues relating to AIDS, and participated in the Harlem Hospital hearing on pediatric AIDS. Congressman Gilman, it's a pleasure and we're honored to have you with us. REPRESENTATIVE GILMAN: Thank you. Chairman Mayberry, for your kind introduction, and members of the Presidential Commission and my good chairman of my committee, Chairman Rangel, who was so kind in his remarks. We thank you for inviting both of us to appear and testify before the Presidential Commission and to carry out your mandate in President Reagan's executive order, and we are so pleased that you are coming to the Congress in this manner to seek out our thoughts and to try to establish some liaison. It's a battle for all of us. It's a bipartisan battle. We're certain it's a national battle? the entire nation is wrapped up in it. And as our committee recently found out in visits to the European Continent, the African Continent, we found that, they, too are seriously engaged in seeking solutions to this very difficult problem. As the ranking minority member of our committee and working along with Chairman Rangel we have heard testimony from many individuals, many experts in various fields over the past decade who have firsthand knowledge of the tragedy of drug abuse; and we find that AIDS is so closely tied to intravenous drug abuse that they go hand-in-hand. Our Narcotics Committee, as you know, has worked extensively to try to increase the public's awareness about the dangers of drug abuse and has tried to bring about in a more coordinated effort at the national level, to try to educate our public, to try to interdict the millions of tons of illicit substances that cross our border each and every day. As you know, they estimate today that illicit narcotics business in our country is over $l3O billion. We have close to 600 to 700,000 heroin addicts in our country, not to mention the millions of cocaine abusers and those who abuse amphetamines and other narcotic substances. The newest and growing drug tragedy, of course, is AIDS that has developed out of the intravenous users; they estimate that of the intravenous drug abusers 50 percent, and that's a conservative estimate, test positive for AIDS. 47 The specter of this deadly disease grows with each report by the Centers for Disease Control. Of those infected with the HIV virus fully 25 percent are intravenous drug abusers, and the vast majority of these are heterosexuals. Already experts estimate that over 270,000 men, women and children will be the targets of AIDS virus by early 19905. Social service and health care providers in our larger cities are already feeling the strain. As it was so poignantly pointed out to us in the testimony we received at the Harlem Hospital recently, the severe cost of hundreds of dollars each day, close to $l,OOO dollars, as a matter of fact, for each AIDS patient. And the number of boarder babies that they have, 30 to 40 boarder babies each day in their hospital who are children of parents who have AIDS and have been tested positive as having AIDS and will be terminal patients. Reports of hospital costs over the lifetime of an AIDS patient have ranged from nearly $25,000 to almost $150,000 per year. And estimates of daily care for infants suffering from AIDS average some $BOO per day. Yet in 1991 it is estimated there will be some 91,000 new cases of AIDS, and unfortunately and tragically, 179,000 deaths by early 1990. We are dealing with trying to save lives as we work on this issue. Associated health care costs for this year will range between 8 billion and $l6 billion associated health costs. Educational research and treatment programs are certainly urgently needed if we're going to warn our citizenry, find a cure, and be able to treat those who are afflicted with this fatal disease. The Narcotics Select Committee has held a number of hearings on AIDS, most recently, the one you indicated in July of this year, Mr. Chairman, at the Harlem Hospital in New York City, That hearing focused on the tragic problem of pediatric AIDS and the need for a variety of programs to care for the boarder babies, the babies born of parents having AIDS. Their infected mothers and the IV drug abusing population at large are overwhelming the hospitals. A massive educational effort is vital as our proper resources for treatment. And resources are so important in any health care program, and particularly with regard to research; and I'm hoping the Commission is going to be able to attract the kind of funding that is needed to do, to make a serious effort in that direction. The most chilling statistic reported at our New York hearing is that AIDS virus is now the leading cause of death for women in New York City between the ages of 25 and 34. Soon after Congress reconvened, after our August recess, Chairman Rangel and I did introduce a measure that he 48 referred to, H.R. 3282, it's entitled, "The Intravenous Substance Abuse and AIDS Prevention Act of 1987,'* a measure which would authorize some S4OO million in grants for a variety of AIDS related treatment and drug abuse prevention services. Specifically, those funds would be under the auspices of the Secretary of Health and Human Services. Some 200 million would be allocated for treatment and counseling services for intravenous drug abusers. 100 million for demonstration projects to reduce the incidents of AIDS in infants. And the remaining 100 million for projects to prevent the spread of AIDS related to intravenous substance abuse which would also include counseling and educational outreach efforts through private and public programs that utilize mass media and other effective means of communication. We were able to see some very explicit informational material in our visit to some of the European nations recently, so explicit they even included some protective devices in the pamphlet that they handed out to the schools. But they felt that it had to be hard-hitting in order to try to reach the public in the most effective manner. I would hope that one of our staff members would supply you with some of that literature that we garnered on our recent trip, so that you can get an idea of what some of the other health agencies are doing around the world. Our legislation aims to prevent, to treat, and reduce the transmissibility of the HIV virus. We are hopeful that the committees of jurisdiction in both the House and Senate will give this measure their prompt attention, so that a quick, thorough, federal response to the intravenous drug AIDS tragedy would be forthcoming. It's certainly not enough funds, but it would be a step in the right direction, a base on which we could build. Recently, in France, our Narcotics Select Committee discussed drug-related AIDS with Dr. Raymond Dedonder, Director of the famed Pasteur Institute in Paris. Dr. Dedonder stressed the urgent need to mobilize the world community to combat AIDS, since to date the scientific community has not been able to find any model for developing an antibiotic cure for the virus. We also visited Marmottan Hospital, one of France's best drug rehabilitation facilities, that is treating scores of heroin-abusing patients, and we learned of their demonstration project, which allows intravenous drug abusers to purchase clean injection needles. I question whether that approach would be truly effective. Rather we should, I think, encourage these abusers to enter a rehabilitative program to try to kick their program, while at the same time provide preventive education for those who do not yet abuse illicit substances intravenously. Our 49 legislation provides that kind of a response in a comprehensive and coordinated manner. We also visited the Vatican's narcotic rehabilitation center, and I am pleased to see Monsignor Cassidy here. We had an opportunity to visit with His Holiness while we were at Castel Gandolfo, but I must say that the Vatican's drug rehabilitation center which, incidentally, was modeled after Daytop, that was a model community in my own Congressional district has been doing an outstanding job of rehabilitating patients. But even there, we were told of the extensive number of the young people who were intravenous users who were tested positive for AIDS, over 50 percent, I think it was close to 60 percent in Rome. An appalling figure. To see these young people who are doing so well in rehabilitation, and yet recognizing that they were going to walk out of those doors with having been tested positive for AIDS. At our recent New York hearing we were privileged to have the United States Surgeon General, Dr. C. Everett Koop, testify before our committee and, as you know, Dr. Koop has been up front on this issue for a long time, and as our nation's number one public health official, his leadership and forthright responses, I think, have been sterling. Weathering controversy after controversy over the use of certain language, as well as ways of preventing the spread of the AIDS virus, Dr. Koop's contribution has been significant. Our committee found it to be unfortunate, however, that the Surgeon General was omitted from even an ad hoc relationship with your Commission, and we respectfully suggest, Mr. Chaiman, that your Commission might invite Dr. Koop to sit side by side with you in some capacity and work closely in all aspects of your inquiry and review. He is truly a valuable resource, and I am certain that your Commission would find his input to be extremely valuable, if you have not already called upon him. Because our ultimate goal all of us, your Commission, our committees, our entire nation is to rid the globe of this new fatal tragedy, it is obvious that we must try to change behavior and attitudes through a swift and proper dissemination of information. Such an education effort is going to have to try to reach every individual, particularly our young people in this nation, regardless of whether or not that person considers himself or herself at risk. AIDS is too serious a threat to allow the "ignorance is bliss" theory to lull us into any state of apathy. Your Commission can rest assured that you are going to have our House Narcotics Select Committee's cooperation. We are more than willing to work with you in this fight in any manner that you may deem advisable, and we look forward to your 50 effective approach to this problem. Thank you for the opportunity to appear. DR. MAYBERRY: Thank you very much, Congressman Gilman. We appreciate so very much your being with us. Members of the Commission, are there questions of Congressman Rangel or Congressman Gilman? Admiral Watkins? ADMIRAL WATKINS: Congressman Rangel, that was, I think, one of the finest presentations that I have heard in this field. And one of the things that impresses me by your statement to us and your news release today is that you have focused on an educational approach which very few others have focused on. We talk casually about the whole area of education as the weapon against AIDS, and yet very few people come out and get very specific about what we mean about an educational process for the variety of individuals that could be at risk, or for the rest of the population. 25 percent of the people going through ninth grade drop out of school. They are not there to hear say no to drugs, some of them are illiterate and haven't had a chance. So we have to get into this area in particular about the education process, and you have proposed something that many would find very novel, because you have to get the peers that are ex-addicts, that have been there before, to intervene and provide some of the support and the intervention strategy. These young people need a sense of self-esteem, that they are doing something for the community again that others can see. I wonder how much the Congress itself understands about the varieties of special education techniques that may not be out there yet that we have to devise, so that when we put money against education, we have to focus it in directions that make some sense. So I would just like to know from you, do you feel that the Congress itself has addressed the subject of education and talked about it sufficiently, to give guidance of what we mean in education about AIDS for the variety of mechanisms that give us AIDS? REPRESENTATIVE RANGEL: No, Admiral, the Congress has not, even though Ben Gilman and I and other members of the committee, we do have legislation and we do hope that the authorizing and appropriations committees might give us an opportunity to get these bills before the President. But the problem is that there's always a social lag in the Congress. Unless there are people in that person's district that can relate to the problem that we are talking about, unless there is enough focus being given to the problem by the media, by a distinguished Commission such as this, then the Congress is going to do what it has to do. They are going to try to reduce 51 the deficit? they are going to try to avoid increase in taxes? they are going to try to have records that are strong in national defense and defense systems? and they are going to try to get votes to get reelected, to do a better job the next two years. Now the Gay community because, I suspect, of their sophistication and access to better education and being perhaps more professional, have so organized in the cities and states and the nation that even the church finds it has to negotiate in terms of dealing with that population. And certainly no politician is being honest if they claim that they haven't heard from these organized groups. But no infant terminally ill with AIDS, no prison inmate with AIDS, no drug addict, no prostitute, no homeless people are going to do anything except cause you problems in trying to explain away where this thing came from. AIDS in a sense has caused more people who are straight and not related to drug problems, but who are sexually active, to now take a look at this whole thing, and perhaps because of that fear and Ben Gilman mentioned it's novel in the United States, perhaps, but when you go to The Netherlands, he talked about protective mechanism. We are going to share with you the language that's in the brochure. And as New Yorkers, in our delegation of 14 members, the look on our faces when we read it. The Commissioner of Health said, ”You know, if you are dealing with a population, you want them to understand what you are talking about. Not to write a thesis on AIDS and how it's spread. So we are dealing with whores and prostitutes, with the language that they understand in their trade.” And it's written by people who understand their problem and who are trying to help them. So, yes, we have got to get to the street addicts, to the shooting galleries? we have got to get into the prisons. And we hope that they just say no. The radio, the television, the billboards would relate to a more sophisticated population. But to allow this time bomb to just go unnoticed is just exposing us to a threat that we can't protect ourselves against. DR. MAYBERRY; Dr. Myers? DR. MYERS; Congressman Rangel and Congressman Gilman, I very much appreciate what you have had to say here this afternoon, and it is clear that you in the state of New York and your colleagues in the state of New Jersey are faced with a more difficult problem in this regard than are some of us in other areas. But there is certainly a lot that we can learn from your experience. I believe that the drug abuse problem in the country is both one of supply and demand, and that we need to be specific in our efforts to decrease the supply and the demand as well. But 52 the question is, where is the highest relative payoff, in your opinion? We put a lot of money into trying to decrease the entry of drugs into the country. We put some money into prevention and education programs. In your experience, in the years that you spent dealing with this problem, from both of your perspectives, do you see that the payoff in one area is relatively higher than the other? REPRESENTATIVE RANGEL: The answer to your question was presented by former President Nixon, where he made it abundantly clear that if you just grab one part of this, looking for a payoff, it's like grabbing a balloon. It's going to pop up some place else. If we were to concentrate just on production and not to deal with demand, we are just going to increase the cost in some producing country. We knocked it out in Turkey, it comes up in Pakistan. We made some inroads in Mexico, it shows up in Burma. We knock out things in Bolivia, it shows up in Peru, and now in Colombia. But we don't have a no-nonsense attitude with these countries. Demand is booming. Production is booming. And the tragedy is, which I don't want to get into, but we have democracies that are held in hostage by drug traffickers. I mean I am not taking away from the Communists, but in South America and to a lesser extent in Mexico, it's a threat to our whole hemisphere, what's going on. So it means that you can't just go and cripple governments with sanctions. You have got to come in with crop substitutes. I spoke with the World Bank participants yesterday, telling them that you have got to make certain not only that they pay back, but you are dealing with stable developing countries that can pay back the money, but not be dependent on these drug crops, so that the business people, the narcotic people, are superior to the others. We can't ever control our borders. When that happens, we are out of business, even though it sometimes appears that we are in trade now, but if we ever were to check every ship, every container, every person that crossed our border you can't do it. The only thing we can do then is try to have some type of deterrent. But as long as people feel that they need a drug, as long as they don't know the dangers of drugs, as long as the demand is there, without any fear of the pusher being arrested, or if he or she is, there's no space in the jail system. In New York, there's 1500 people waiting for trial. If you have any Legal Aid lawyer, they tell you to ask for a jury trial. You can't get it in any major city. They don't have the judges, the courthouses. And if someone slips through and gets arrested, there's no space in the jails for them; not for first, second, third, fourth offenders. 53 And so what I'm saying is that you need a national strategy where mayors and governors have to buy into that strategy, not to expect the federal government to bail them out, but to be able to say what are you doing in the schools, in the churches, in the homes? What is the private sector doing in terms of partnership? And I think you have to be able to say that as we have built up this multi-trillion dollar defense system, it should not be beneath the dignity of the Department of Defense from time to time to, as they check out the mines in the Persian Gulf, to check out the ships that are coming in here and to let them know that the military believes that you are threatening our lines of security. I have jokingly said that if a rumor got out, and I'm spreading it, that the heroin is coming in being flown by Cuban pilots, that there's no question that Casper Weinberger would be on top of the case. But I'm saying that you have to deal with the kids, the adults. You have to find out rehabilitation. Rehabilitation. You just say no to drugs. You just call the hot line. Well, if you call in New York, you're going to be placed on hold because we don't have any place to put them in New York, and then fearfully there's some professionals that will tell you, let's try methadone to stop AIDS. Let's really try to dispense heroin. Let's set up little community centers. And I ask in whose community, who is going to dispense it, and how many of American youth that we had hoped would be able to be there to protect the flag are you making zombies of by making dependent on drugs that are even more addictive than heroin. I would say that we have to touch all bases, and we have to include it in the same priority as our national security. I yield to Mr. Gilman. REPRESENTATIVE GIIiCAN: I think the Chairman has said it all, that it's a multifaceted battlefront. You have to do battle on each battlefront. You have to hit supply at the source where it's produced. Incidentally, this is what we did in the Omnibus Drug Bill of 1986, a $3 billion, three-year effort that hits at five major battle fields; Eradicating at its source; interdicting once it gets into the distribution lines and arteries? and then beefing up the enforcement effort once it reaches our shores. And then on the demand side, to get some decent curriculum into the schools and make certain that teachers are trained to present that curriculum, and then to rehabilitate the poor victims who are drug abusers. REPRESENTATIVE RANGEL: Now when we passed that bill, which was veto-proof, in the House and Senate, just before the 54 election, only 15 members inadvertently voted against the House-passed bill. The President had one of the largest bill-signing ceremonies that I have ever seen on television, and this time I was honored enough to be a participant. We added at one point $7 billion to the already existing budget. We found out today, Ben, that the law enforcement money just was received today by New York State; that the rehabilitation money is pending; that the delay in getting the money to the states has now caused the Administration to say that we should not have to appropriate the money for 1988 because they never got it and never used it in 1987. And so in the education area, where we asked for $250 million, that has been reduced to $lOO million. Where we asked for $225 million in law enforcement, they have asked for nothing since they haven't spent any of the money for 1988. They have asked for a cutback in Customs, and I don't know what they are doing in terms of crop substitution, in terms of the State Department. So that here we have had the bill, we have passed a law, and reporters are now saying did you do that politically, because the mayors and the governors don't seem to find the money. Well, it just proves that whoever wrote the Constitution really knew what they were doing, because if you don't find the Executive working with the Legislative branch, believe me, each branch has the power to hold the others hostage. So the Congress spoke, the President signed the law, and the money is in the Treasury. DR. MAYBERRY: We thank you both very much. We got a sense of urgency when we were in New York relative to the intravenous drug problem, and you certainly heightened that concern and urgency with us today. We look forward very much to the opportunity to work with you. Congressman Rangel and Congressman Gilman. We are very grateful for you taking the time in your busy schedules to be with us here at the end of the day, and after a long day for you, I know. Thank you very much. REPRESENTATIVE RANGEL: Thank you for giving us the opportunity. And as Ben Gilman says, our committee stands behind you 100 percent, and whenever our staff or the congressional research committees can be of any assistance to you legislatively or politically, you can depend on our support. DR. MAYBERRY: We look forward to calling upon you REPRESENTATIVE 6IIMAN: Mr. Chairman, we wish you godspeed in your work. 55 DR. MAYBERRY: Well, thank you, Congressman Gilman. We really appreciate it. REPRESENTATIVE RANGEL: When he says godspeed, he means that, literally. DR. MAYBERRY: Representative Roybal is tied up on the floor, I presume, and the Commission will look forward to receiving his statement for the record. If the Commission members have no other items on their agenda, then we are adj ourned. Thank you. [Whereupon, at 6:00 o'clock p.m., the Commission was adjourned.] 56 APPENDIX -from the office of Senator BdwardM Kennedy of/yiaSsac/Hisetfs TESTIMONY OF SENATOR EDWARD M. KENNEDY AT AIDS COMMISSION HEARING For Immediate Release: September 30, 1987 CONTACT: Paul Donovan Robin Buckley (202) 224-4781 Dr. Mayberry# Commission members# it is a pleasure to be here. I welcome this opportunity to address the AIDS Commission. Effective leadership means being in touch with all of the active parties involved in the AIDS epidemic. And it certainly seems that the Commission is trying to do that. It is clear that the AIDS epidemic will continue to plague us into the next decade and likely into the next century. The number of people infected is extremely large already, and it will continue to grow. The magnitude of this scourge# which has been called a possible "catastrophe" and a "health disaster of pandemic proportion"# may soon surpass any disease in this century# and possibly any disease in history. The AIDS virus is a threat to Americans in all walks of life. It is a sexually transmitted disease that does not discriminate between men and women# young and old# or whites and blacks. According to the O.S. Public Health Service# by 1991, AIDS will claim more lives each year than the entire Vietnam war. We must act immediately and decisively to halt this killer. Over the last year# awareness and concern about AIDS has increased dramatically within the Congress and throughout the country# and this Commission has a unique opportunity to provide needed leadership at this critical time. I would like to draw your attention to a bill that I introduced several months ago, which has now been reported out of the Senate Labor and Human Resources Committee unanimously# with full bipartisan support. Senator Orrin Hatch of Utah is the principal cosponsor of that legislation. This comprehensive measure will accelerate America's response to this deepening public health crisis. The bill is based on a four point plan: To educate all Americans about AIDS risks and enable them to make informed choices to protect themselves; To develop home and communit/ based treatment alternatives for people with A CDS that are more economical and appropriate; To accelerate the search for AIDS vaccines and cures by putting federal funds to work faster; inH to assure that all Americans have access to voluntary and confidential AIDS testing and counseling. Our immediate obligation is to insure that fellow citizens do not become infected. That is why our bill calls for a comprehensive national plan of education# prevention and PAGE 2 voluntary testing. In particualar, we must target our prevention and education effort on those individuals at highest risk. We need innovative, effective, and rapid ways of finding these individuals and convincing them that life saving measures must be taken. To do the job, we must recruit and train new personnel—- and equip them with the resources and the methods to help local educators and public health officials reach their communities. It is essential that we employ the full power of the media to reach every corner of the nation with prevention information. Because the ultimate answer must be provided through ■..omedical research, we also propose an immediate effort to streamline the procedures for getting federal funds into research labs and clinics. The NIH will be asked to cut grant approval time to no more than six months. We would provide resources to train more researchers and create a network of AIDS research centers across the nation—just as we have done for cancer. Unless we develop new approaches for the care and treatment of people with AIDS and related illnesses, many urban health care systems will face collapse. Today, there are city hospitals in which 25 percent of the beds are occupied by people with AIDS related illnesses. We must involve more community physicians and provide the means to substitute day care and home care for costly inpatient services. In keeping with recommendations of the Centers for Disease Control and the overwhelming consensus of leading public health experts, we have also introduced legislation to encourage individuals at high risk to participate in voluntary testing and counseling, with full guarantees of confidentiality and prohibitions on discrimination. Last week, the Senate Committee on Labor and Human sources heard testimony from an American family with four three of whom were born with hemophilia and who now test positive for AIDS antibodies. Their parents told of the children's struggle to make sense of a world turned upside down by their personal AIDS crisis. Although the children show no sign of the disease, the family is now without a source of income, without a school, without even a place to call a home. The pediatrician who wisely recommended testing in the first place now says that he would not recommend testing again in the same situation. I urge the Commission to look closely at the sound recommendations of the Center for Disease Control and the American Medical Association. It will be impossible to find the lillion and half individuals who are currently estimated to be infected with the virus, if they feel threatened by disclosure of their status or by discrimination. The best way to conquer AIDS is to bring it out into the open, into the light of day. The alternative is to drive the epidemic underground and ourage its spread. That is unacceptable, and it is also an itation to disaster. Our Senate committee has heard first-hand how istating disrimination based on AIDS test results can be. I understand that your commission will also hear about the nightmare that the Ray family of Florida has gone through. As I've said, Senate bill 1575 and companion legislation in the house seeks to set a reasonable federal standard to insure confidentiality and outlaw senseless discriminatation. Our bill has virtually universal support from leading public health experts. Secretary Bowen testified last week that federal action in this area is unnecessary and premature, and that protection of confidentiality and prevention of discrimination should be left to individual states. I beleive that policy is an abdication of federal responsibility, and 1 wonder whether this Commission was consulted before the Administration adopted this unwise course. Finally, I would make one further point. Recognizing that IDS is an emergency, the Congress made a supplemental appropriation of $2O million this summer to insure that a mailing about AIDS prevention would go to every American household from the Centers for Disease Control. This morning, I was informed by the CDC that a national mailing won't be possible—that it is too late and the Christmas mailing rush will make it impractical. Few priorities are more important than educating our citizens about AIDS as soon as possible. Every household in America should be receiving AIDS prevention information, and I urge the Commission to press the urgency of this priority on the Administration. The tasks before us are many. Those who are ill need compassion, the hope of a cure, and affordable medical services. Those who are infected need counseling and education. Those who are at risk of infection need a vaccine. All of us need the faith and the discipline to continue to give our best efforts. The answers we seek will come from the best lights of science, not the darkness of fear and ignorance. It is now clear that AIDS has become a global health crisis. If we fail to do all that is within our power to conquer it, our failure will be measured in countless lost ives, untold suffering and enormous cost. Our ability to spond with care and compassion, reason and resolution will be «.ne best measure of our success in the months ahead. I urge the Commission to contribute to bringing the country together to fight this crucial battle. I welcome the to^work with the Commission in the months ahead and 1 look forward to the Commission's important role in advancing our knowledge and understanding of this disease. WBSS, TED NEW YORK. CHAIRMAN itM UOHTFOOT. (OVYA THOMAS w SAWYER OHIO ERNEST L KONNYU, CALIFORNIA JOtVfcNYESo.'jR, MICHIGAN JAMESM. INMOFt OKLAHOMA HENRY A.WAXMAM. CALIFORNIA ONE HUNDREDTH CONGRESS BARNEY FRANK. MASSACHUSETTS Congress of the United States Hvmse of Ktpresentatioeo HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS SUBCOMMITTEE OP THE COMMITTEE ON GOVERNMENT OPERATIONS RAYBURN HOUSE OFFICE BUILDING, ROOM B-372 WASHINGTON, OC 20515 (202)228-2548 HONORABLE TED WEISS, CHAIRMAN SUBCOMMITTEE ON HUMAN RESOURCES AND INTERGOVERNMENTAL RELATIONS HOUSE COMMITTEE ON GOVERNMENT OPERATIONS STATEMENT BEFORE THE PRESIDENTIAL COMMISSION ON THE HTV EPIDEMIC SEPTEMBER 30, 1987 INTRODUCTION Mr* Chairman and Commissioners, I appreciate this opportunity to present the findings and recommendations of the Subcommittee on Human Resources and Intergovernmental Relations. Since January of 1983, when I became chairman, the Subcommittee has conducted an ongoing review of the Federal response to the AIDS epidemic at the Department of Health and Human Services, the Department of Education, and the Veterans Administration. We have held hearings reviewing AIDS funding, health care, drug development, discrimination and civil rights, testing, and public education. I would like to submit to you transcripts of these hearings. In addition, lam presenting two reports on the Federal response to the AIDS epidemic: one prepared by the subcommittee and one by the Office of Technology Assessment at our request. This week the number of cumulative AIDS cases will reach over 42,000. As horrifying as this figure is, it is only a tiny portion of an epidemic which includes unknown numbers of people suffering with AIDS-related complex; infected with the AIDS virus; likely to become infected in the future; and the family and friends of all these. A recurring theme has emerged from our review of the Federal response to the AIDS epidemic: Oh the one hand, we have found a large number of dedicated public servants, especially within the Public Health Service. Realizing the potential effects and dimensions of the epidemic, these people have worked very hard to develop effective AIDS research, education, and control programs, based on scientific evidence• 2 Unfortunately, these dedicated public health specialists have not been afforded the leadership required to mount a truly effective Federal campaign against the disease. We have documented numerous cases in which top-level Administration officials, intent on reducing Federal involvement in all domestic spending activities, including public health, have delayed or overruled PHS efforts in the fight against AIDS. There is also no question in my mind that the Federal response to this disease has been delayed by unfounded notions that AIDS would only affect certain limited segments of American society. This misconception, combined with the Administration's conservative social agenda, has added to the delay. If there is one message that I would want to leave with this Commission, it is that we must find a way to return the management of the Federal AIDS program to the public health servants who are trained and qualified to fight this ongoing health catastrophe, and to remove the undue influence of political expediency. In the time I have remaining, I would like to touch on four important subjects; budget, provision of health care, information and public education, and coordination of Federal activities. I. THE FEDERAL AIDS BUDGET In every previous public health emergency, public health officials have led the fight for adequate resources. With the AIDS epidemic, this has not been the case. Year after year, under the leadership of many of the witnesses appearing before you today, the Congress has forced funds on a reluctant Administration• We are now nearing the end of the budget process for fiscal year 1988. In January, the Administration's proposed budget for AIDS was $534 million. It is likely that Congress will ultimately appropriate almost $1 billion for 1988. This year, as in the past, we have had to circumvent the official budget requests and return to earlier, more realistic needs assessments prepared by the agencies but rejected by the Office of Management and Budget. At the end of each fiscal year we regularly see another serious problem. Funds authorized and appropriated for crucial AIDS functions simply do not get spent. An example of this from Fiscal Year 1987 is the School Health Initiative to Prevent AIDS. The School Health Initiative is a program at the Centers for Disease Control aimed at 3 educating school children about AIDS. Over sll million was set aside for this function during fiscal year 1987. Today, the last day of the fiscal year, almost half of this money has not been spent* Concomitant with the problems in AIDS funding are the cutbacks which are occurring in allied health areas. The pressure for increased AIDS funding has meant the redirection of funds from other important public health areas, such as sexually transmitted disease (STD) research and education. This is alarming, as there is increasing scientific evidence that sexually transmitted diseases are cofactors in AIDS transmission. In robbing from STDs we end up cheating AIDS control efforts as well. 11. THE FEDERAL HEALTH CARE SYSTEM Of the estimated 1.5 million people who are now infected with the AIDS virus, 30 percent, or 450,000, are expected to develop the disease. If the cost of treating a patient over the course of his illness is $75,000, the total cumulative cost for this group will be nearly $34 billion. And these numbers may be very conservative estimates. Suppose the total number of infected persons should grow from 1.5 million to 3 million people (which is very likely); and suppose instead of 30 percent, 60 percent of those infected develop AIDS. If this scenario came to pass, the total cost of the AIDS epidemic could be as much as $135 billion. But who will pay? And how? In the research arena, a campaign has been undertaken to develop vaccines and treatments. Prevention programs are beginning. But in the vital area of health care and its financing, not much is going, on. A recent study of 169 public and private teaching hospitals found that Medicaid was the main source of payment for 54 percent of their AIDS patients in 1985. Of the remaining patients, 24 percent were indigent and private insurance covered: 17 percent. But Medicaid's low reimbursement rates do not come close to covering the full cost of treating persons with AIDS • The greater share of the burden for in-patient care is falling on States and cities and public hospitals that must cover the cost of indigent care. The Federal Government must become a greater partner in the financing of health care for AIDS patients. Only 1 to 3 percent of AIDS patients have qualified for Medicare, due to the fact that eligibility requires a two-year waiting period and so few AIDS patients live that long. I have introduced legislation which would make Medicare benefits immediately available to those AIDS patients who qualify for Social Security disability status. My bill would waive the two- 4 year waiting period. Many persons with AIDS have to become impoverished before they can become eligible for Medicaid. Others face financial ruin when attempting to meet exorbitant drug costs or when they become too sick to work and thus lose employer-based insurance policies. AIDS is a disease which often results in both frequent periods of acute illness and chronic long-term impairment. However, health care services are primarily organized to provide short-term, in-patient hospital care for the acutely ill. Because of the incompatibility of the disease with available health-care services, individual needs of AIDS patients are not often met by existing programs. The Federal Government must do much more to fund and encourage the development of creative programs to respond to the complex needs of persons with AIDS. We must also redirect our services to provide long-term care for AIDS patients who have no home to return to and no family or friends willing or able to attend them after periods of in-patient care. Out-patient clinics, day care centers, supportive housing, and alternative residential care facilities such as nursing homes, respite care centers, and hospices are all desperately needed by persons with AIDS. And so are the funds to pay for them. We need to convince a reluctant and necessarily budget- minded Administration that it is not only humane, but cost effective, to adequately fund alternative health care and revise the current rigid and restrictive Federal regulations and policies which do not allow for the spectrum of alternative services needed by AIDS patients. If modifications were made in current rules, money wasted on in-patient care could be redirected to other services. 111. THE FEDERAL INFORMATION AND PUBLIC EDUCATION CAMPAIGN Perhaps the greatest failing in the Federal response to the AIDS epidemic is our inability to mount a widespread and effective information and public education campaign. In the absence of a vaccine or treatment, all agree that this is the only available prevention strategy. The United States, with its 42,000 AIDS cases, lags far behind countries like Great Britain, Denmark, Switzerland, and Australia—which have far fewer people with AIDS or HIV infection—in our public education campaign. At least four years ago, documents reviewed by the subcommittee reflect attempts within the Public Health Service to develop a comprehensive information dissemination program. 5 As you know, it is only within the current year that any substantial Federal activity in this area has occurred. Much of the current year's activity has been spent slowly developing a highly touted AIDS superplan—the Education/Information Plan to Prevent and Control AIDS in the United States—which has been largely ignored since its release. Considering the urgency of educating the American people about AIDS, even this plan was developed at a murderously slow pace. It is now six months after that plan was issued in which so much was promised. Little seems to be happening. We are now on the eve of AIDS Prevention Month, and just this morning the Administration unveiled the culmination of several years* efforts to develop an AIDS information program: a few public service announcements and a national AIDS mailing which will not be mailed. It is unclear to me what massive AIDS education activities will unfold in the next weeks other than these public service announcements. WE MUST DO BETTER! The cost of lethargy and inactivity on AIDS education is lost human lives. Every day more and more people are becoming infected with AIDS. It has been estimated that in 1991, 74,000 new cases of AIDS will be diagnosed. Half these people are presently infected with the AIDS virus. Half are now uninfected. We must move at great speed to spread information and halt the passage of the AIDS virus. There is also a lack of coordination among the agencies working on AIDS education. The most recent example, which my subcommittee is also reviewing, involves AIDS materials being developed at the Department of Education, which is presently working on a booklet designed for teachers, parents, and school administrators. To the best of our knowledge, this booklet is being written without any input from the Public Health Service. As I'm sure you are aware, all of the education programs were delegated to the Centers for Disease Control Center for Health Promotion and Education. Many of their public health scientists specialize in school health projects. However, they are not being called upon or consulted by the Department of Education. This Center long ago prepared comprehensive school health guidelines to aid local communities in their development of their health curriculums. But to date, administration infighting has prevented them from being issued. IV. NATIONAL ADVISORY PANEL ON AIDS The information/education efforts are not the only area that 6 suggest the need for an outside advisory and coordinating body. Similarly, our ongoing review indicates overlapping programs and competing interests in the research activities being carried out by, and the funding of, the various Federal agencies. As early as November of 1983 we issued our report recommending an expert panel outside the Government to carry on such a coordinating/advisory function. The creation and charter of this Presidential panel cannot satisfy what I believe is a continuing need for an ongoing, scientific advisory group, independent from the influence of the executive and legislative branches, and others. It is for this reason that I introduced, last’ April, legislation intended to create such a body within the National Academy of Sciences 1 Institute of Medicine. While I supported efforts this summer to create another AIDS panel, in addition to this one, these proposals also fail to remove an advisory group from the political arena. In closing, no amount of wishful thinking is going to relieve the Federal Government of the massive responsibilities this epidemic presents. If we fail to meet this responsibility, untold thousands of human beings will needlessly die. Neither State and local governments, nor private agencies, can be expected to fight this battle for us. The Congress has clearly demonstrated its commitment to providing whatever is necessary. But the Public Health Service must be permitted to lead the way. STATEMENT OF THE HONORABLE CHARLES B. RANGEL/ CHAIRMAN SELECT COMMITTEE ON NARCOTICS ABUSE AND CONTROL TESTIMONY BEFORE THE PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC WEDNESDAY, SEPTEMBER 30, 1987 A PUBLIC MEETING ON THE AIDS EPIDEMIC ROOM 106 DIRKSEN SENATE OFFICE BUILDING GOOD AFTERNOON CHAIRMAN MAYBERRY , AND MEMBERS OF the President's AIDS Commission/ and especially to Dr. Burton Lee/ who testified before my Select Committee on Narcotics Abuse and Control just last week as we explored the problems of AIDS and IV Drug Use as it relates to minorities. As ALL OF YOU PROBABLY KNOW, I HAVE SPENT ALMOST THE LAST 18 YEARS OF MY LIFE SERVING HERE IN THE UNITED STATES CONGRESS. Having been around that long, it is very difficult mi to notice AND FEEL DEEPLY CONCERNED ABOUT THE MOUNTAIN OF ILLS THAT SEEM TO CONTINUE TUGGING AT THE VERY HEART OF AMERICA. WE ARE IN A FREE COUNTRY THAT CAN LEGITIMATELY BOAST OF BEING THE RICHEST, MOST POWERFUL, MOST WEuL-ENDOWED AND BLESSED NATION IN THE WORLD, YET WE CONTINUE TO HAVE PEOPLE WITHOUT JOBS, PEOPLE WITHOUT DECENT EDUCATIONS, PEOPLE WITHOUT A PLACE TO SIEEP DURING THE WINTER AND PEOPLE WHO HAVE NO FOOD AND NO IDEA WHERE THEIR NEXT MEAL, IF THEY ARE LUCKY ENOUGH TO GET ONE AT ALL, IS COMING FROM. Because we have made so little progress in effectively SOLVING MANY OF THESE PROBLEMS OVER THE YEARS, 1 SOMETIMES GET THE FEEUNG THAT WE MAY BE WITNESSING THE GREAT DECLINE OF American society. It is little wonder why such a sense of HOPELESSNESS AND HELPLESSNESS ABOUNDS IN OUR SOCIETY TODAY, SPECIALLY AMONG OUR YOUNG PEOPLE, WHO SEE ONuY A DIM l. I GHT AT HE END OF THE TUNNEL WE CAI.. THE FUTURE. 1 POSSIBLY CAN HOW THE AIDS VIRUS APPEARS TO BE TAKING A HEAVIER TOLL ON THIS NATION'S BLACK AND HISPANIC COMMUNITIES. Research is now beginning to show an exponential growth in THE NUMBER OF BLACK AND HISPANIC AIDS CASES. THE MOST COMMON STATISTIC USED TO BACK UP THIS CLAIM IS THE FACT THAT WHILE Blacks and Hispanics comprise together about 18% of the POPULATION, THOSE SAME GROUPS ARE ABOUT A OUT OF EVERY 10 AIDS CASES THAT HAVE BEEN REPORTED. AND WE ALSO KNOW THAT THE BLACK and Hispanic problem with AIDS is more closely connected with IV DRUG ABUSE THAN WITH ANY OTHER GROUP OF AIDS SUFFERERS IN AMERICA. AIDS AND DRUGS ARE THE MOST DEADLY ONE-TWO COMBINATION TO hit American society in modern times, and it promises to get worse. Unless we realize the interconnectedness of drug use. UNSAFE SEXUAL PRACTICES AND THE TRANSFUSION OF BLOOD AND THE MIXING OF OTHER BODY FLUIDS, WE WILL NEVER SOLVE THE PROBLEM. This is a multi-headed monster. Arrogance from those of us who NEITHER LIVE THE LIFESTYLE NOR COME IN CONTACT WITH THE PEOPLE MOST AT RISK OF GETTING THE VIRUS WILL BE THE KOMAN-LIKE Achilles heel of America. We had better realize AIDS threatens THE ENTIRE COUNTRY. YOU, THE INDIVIDUAL MEMBERS OF THE COMMISSION, ARE IN A POSITION TO REPORT TO THE PRESIDENT OF THE UNITED STATES THE SERIOUSNESS OF WHAT WE FACE WITH THE AIDS CRISIS. YOU WILL BE ABLE TO CONVINCE HIM AFTER YOUR INVESTIGATION THAT AIDS IS NOT JUST A MORE SERIOUS STRAIN OF THE FLU, AND IS NOT A DISEASE TO DATE, MORE THAN 570 CASES OF PEDIATRIC AIDS CASES HAVE SEEN REPORTED TO THE CENTERS FOR DISEASE CONTROL IN ATLANTA, AN OVERWHELMING MAJORITY OF THEM ATTRIBUTABLE TO THE IV DRUG USE OF THE MOTHER OR THE SEXUAL PARTNER. BUT I GUESS THE MOST STRIKING THING ABOUT THIS IS THAT 9 OF EVERY 10 PEDIATRIC AIDS SUFFERERS ARE BLACK OR HISPANIC. For a while, we thought AIDS was an affliction confined to THE HOMOSEXUAL POPULATION. BUT NOW WE FIND THE THREAT OF AIDS ENCROACHING ON THE HETEROSEXUAL COMMUNITY WITH NOTICEABLE FREQUENCY. AND WHERE DO MOST OF THOSE CASES COME FROM? IV DRUG USE. IN FACT, AMONG THE HETEROSEXUAL POPULATION, 7 OUT OF 10 CASES OF AIDS RELATE TO IV DRUG USE, In OUR PRISONS AND JAILS, WHERE WE ROUT INE_Y SARDINE-PACK INMATES, THE RISK OF THE SPREAD OF AIDS THREATENS TO FURTHER PUT THE GENERAL COMMUNITY AT RISK. WHY? BECAUSE SOMEDAY, INMATES WITH THE AIDS VIRUS WILL BE RELEASED BACK INTO SOCIETY. AND WHERE DO YOU THINK THEY WILL GO? THEY WILL INFECT THEIR WIVES, THEIR GIRL FRIENDS, AND ANY OTHERS WITH WHOM THEY MAY HAVE INTIMATE CONTACT. As OF ABOUT A YEAR AGO, AUTHORITIES DOCUMENTED 1,232 PRISON AIDS CASES IN 58 Federal, State and local correctional systems. Again, IV DRUG USE IS BELIEVED TO BE THE BIGGEST CONTRIBUTOR TO INMATE AIDS CASES. IN A RECENT STUDY OF MILITARY VOLUNTEERS, BLACK RECRUITS WERE FOUR TIMES MORE LIKELY THAN WHITE RECRUITS TO BE INFECTED WITH THE AIDS VIRUS. We are out to save a people. A nation. We are doing all we can TO ADDRESS A NATIONAL SECURITY PROBLEM/ BUT WE CANNOT DO IT ALONE. OUR NATIONAL WILL IS EASILY MOBILIZED WHEN WE TALK ABOUT THE Communist threat. But I don’t believe the so-called Communist INFILTRATORS HAVE IN THE LAST 20 YEARS/ 30 YEARS, KILLED AS MANY OF US AS HAVE DRUGS. THE COMMUNISTS HAVEN'T TAKEN AS MANY American lives the last five years as has AIDS, and probably WILL NOT TAKE AS MANY OVER THE NEXT FIVE YEARS AS AIDS THREATENS TO TAKE. Whatever efforts we put together on fighting AIDS must INCLUDE COORDINATION. WITH SO MANY GROUPS AND AGENCIES AND LEVELS OF GOVERNMENT RUNNING OFF INTO DIFFERENT DIRECTIONS, WE WILL NEVER MAKE ANY PROGRESS. WE NEED TO ESTABLISH SOME TYPE OF NATIONAL NETWORK FOR THE OPEN SHARING OF INFORMATION. WE NEED TO SPONSOR AN ANNUAL, OR SEMI-ANNUAL CONFERENCE ON AIDS, TO FACILITATE THE INFORMATION EXCHANGE AND TO ASSURE THAT ALL INTERESTED PARTIES SERIOUSLY SEEKING A SOLUTION TO THE PROBLEM ARE WORKING ON ONE ACCORD. WE HAVE TO HAVE SUBSTANTIVE, NOT SYMBOLIC, SUPPORT BY THIS ADMINISTRATION. I WOULD LIKE TO CLOSE MY STATEMENT TODAY BY MAKING SOME RECOMMENDATIONS TO THIS COMMISSION, IN ADDITION TO THE ONE I HAVE TRIED TO MAKE THROUGHOUT THAT YOU CONVINCE Mr. REAGAN THIS CRISIS IS REAL, AND THAT ALL OF AMERICA IS AT RISK FROM AIDS AND THE THREAT THAT IT POSES. COMMUNITY AR£ TWO LARGE INSTITUTIONS CAPABLE OF AIDING THE CAUSE- BUT I FEEL THAT BOTH OF THOSE SEGMENTS IN OUR SOCIETY ARE TO SOME DEGREE CONFUSED OVER WHAT SHOULD BE THEIR PROPER ROLES IN FIGHTING THIS KILLER. IT IS UP TO US TO LEAD AS AN EXAMPLE - AND TO GET THEM INVOLVED IN CONTRIBUTING THEIR OWN RESOURCES TO FIGHTING AIDS. And- finally- I think we have to push harder for community OUTREACH PROGRAMS. IT MAY BE UNORTHODOX- BUT GETTING STREET PEOPLE TO GO OUT AND WARN OTHER STREET PEOPLE ABOUT THE DANGERS OF SHOOTING UP- AS WELL AS THE DANGERS OF SHARING NEEDLES- IS A LOT MORE EFFECTIVE THAN DOCTORS AND SOCIAL AND HEALTH WORKERS PASSING OUT PAMPHLETS AND SAYING- "JUST SAY NO.” Mr, Chairman- thank you for allowing me to appear before you TODAY. I LONG FOR THE DAY 'WHEN Mr , REAGAN AND HIS CABINET WILL ANNOUNCE PUBLICLY TO THE AMERICAN PEOPLE THAT THE ILLEGAL USE OF DRUGS IN THIS COUNTRY IS A NATIONAL SECURITY CONCERN. I LONG FOR THAT DAY- WHEN THEY WILL SAY IN THE SAME BREATH- "WE HAVE TO DO SOMETHING ABOUT THAT PROBLEM BECAUSE IT IS ACCELERATING AIDS AND SOCIAL DESTRUCTION." I LONG FOR THAT DAY- WHEN THEY WILL ALSO say- "Here are the resources to combat the drug problem that has CONTRIBUTED TO OTHER PROBLEMS LIKE AIDS. WE MUST GET RIO OF DRUGS NOW." U S. Government Printing Office 19EB -61 7-020/U35i 2