Tuesday, May 30, 2006

Margaret Heckler, The Age of Aids, on Frontline

interview: margaret heckler

[photo of Margaret Heckler]

Margaret Heckler was President Reagan's secretary of health and human services from March 1983 to December 1985. Here she says AIDS was her number one priority, but that she had to balance her department's response against the Reagan administration's fiscal priorities. Heckler maintains that preexisting Public Health Service budgets were enough and that additional funding to fight AIDS was unnecessary. "I think that really, we could not have gained anything more by increasing the cash expenditures," she tells FRONTLINE. "We were in the right direction. We were placing the emphasis on those who could provide the answers. In a peculiar case, this was not a problem that money could solve; it was a problem that the scientists could solve." Heckler also addresses the infamous April 1984 press conference where she and virologist Robert Gallo announced his discovery of the AIDS virus. Heckler suggested a vaccine would be available within two years. "That turned out to be totally incorrect," she acknowledges. "But at that time, we did not know that the replication of the virus would be so difficult -- and it still is a problem. ... That is the story of AIDS. There were new discoveries, lots of myths that we could easily dispel, but then very serious medical and scientific questions that had to be dealt with." This is the edited transcript of an interview conducted on Jan. 11, 2006.


[When did you first hear of AIDS?]
I was quite surprised to learn from a conversation with David Winston, who had been a staff member of the Senate Health Committee under then-Sen. [Robert] Schweiker, and who had served with Gov. Reagan at the Health Department in California. … I asked his recommendations on the priorities I might set, and he said, "Oh, well, you must begin with AIDS." I said, "AIDS?" I had never heard of AIDS. "What is AIDS?" He said, "This is a disease that is killing young people, and the hospital wards in San Francisco are crowded -- in fact, bulging." I said, "Well, I have never been briefed on this; I have never heard of it." I had just gone through the whole confirmation process, and it had never been mentioned.
I just returned to the department and asked to see Dr. [Edward] Brandt who was the [assistant health secretary] and I just said, "Dr. Brandt, I just heard of a disease that has never been mentioned to me before: AIDS." He said, "Madame Secretary, you don't want to know." I said: "I may not want to know, but I must know. I am responsible for this department, for everything that happens here, and this is frightening. I have just heard the worst stories about it." He then went on to give me a brief summary.
I immediately realized that this was a serious crisis, and my first step was to go to the White House and talk to [Chief of Staff] Ed Meese, because … I knew that this was potentially going to go over the budget, and I wanted to let him know, give him a heads-up on that. I told Ed about the disease, that I felt this was the most serious priority I had … and said that if I need for the funds, I have to come back to him, and I would do so. …
Subsequently, many times, I did mention AIDS [to the White House], and I brought people from the [Health and Human Services] Department to our domestic policy meetings -- I was chairing that meeting -- and for the Domestic [Policy] Council. I felt it was very important to exchange views and brief key people at the White House, which happened throughout the time that I was HHS secretary. …
I felt that since this was such a serious issue that I would become very involved in the total management of it, the oversight, and my goal was really to drive the department, with its scientific expertise, into resolving some of the basic medical questions for the patients as well as for the whole society.

You said something just before … that perhaps HHS as an institution wasn't aware of AIDS before you came in.
No. … Dr. Brandt himself told me that they had been working on this disease. I just had not been briefed on it, and there were no papers in preparation for my confirmation about AIDS. I had not been briefed personally. …
We were privately operating in the sense of an emergency, which was not so proclaimed to the country as such.
AIDS was a mystery. It was a puzzlement even to the scientists. Before we knew what to do or how much it would cost or anything like that, we needed to find out what the scientists could tell us.
My goal was simply to expedite the process … and create the priority of AIDS as the number one issue at the Department of Health and Human Services.
… What was the atmosphere in the administration regarding spending?
Economic stability was one of the great goals of the president, and he was a fiscal conservative. He also felt that our spending policies were out of hand, and I had dealt with this as a member of Congress when he was first elected. … The budget was out of control. … I knew that this budget was fat and could be trimmed, and had to be, because we wanted to establish fiscal integrity for the country.
However, having said that, I still knew that there had been no allocation for AIDS in any budget I had seen, … and it was terribly important to make the administration know and the White House know that this was a high priority with me, and it was an urgent priority.
I felt that [Meese] understood that I wanted to see the problem handled in the most appropriate way, and if that took more money, I was going to request it and expect support. I had no idea what the parameters of that funding might be. But this whole question was a puzzlement for the scientists, for HHS, and I thought that it was important to just stake out my request. …
I was giving them a forecast of what could happen, because we were actually blind. There was no understanding of the cause of the disease. We had very slight information on all of the other factors relating to AIDS, and under those circumstances, one could not think of the financial consequences to the department from simply budgetary costs. I was very aware of the budget because as the secretary, that was one of my major responsibilities, to keep the budget as low as possible while serving the people well and retaining important programs. At that early stage, I had no sense of what the outcome would be financially. But we had to begin, and we had to begin it with the concept that this was an urgent priority for America.
So you came in … accepting the responsibility for the department, knowing that it would be subject to this fiscal restraint.
Oh, yes, I did, because I knew the country needed to have fiscal restraint. The president was right. In fact, he has led the way to many of the fiscal improvements worldwide. Other countries that suddenly saw the desirability of the balanced budget were motivated by the experience and the illustration of what the United States had done. …
Did you ever speak directly with [President] Reagan … about AIDS?
No. Actually, I don't recall a discussion with him, because generally speaking, we had very structured Cabinet meetings with a very tight agenda. … And this was much too early. Since we were not knowledgeable about the full scope of the AIDS dilemma, we were not capable of really presenting anything to the Cabinet. Usually the presentations to the Cabinet were determined in advance, predetermined, and every aspect of the problem was known so that the secretary involved with that particular issue was able to answer all of the colleagues' questions. This was not the case with AIDS. We were in a search-and-rescue mission, and we had so much to learn. …
We did brief [the Domestic Policy Council]. I know that I mentioned it to others, … and I sometimes brought staff who would also speak on the issue, so there was a general awareness. …
I became probably the most knowledgeable person, because I was in my own Cabinet meetings at the conference room. We met once a week, but I also followed the list of medications, the FDA [Food and Drug Administration] activity, and I received all notices on political progress for the AIDS patients at the [NIH (National Institutes of Health)] Clinical Center. I had given [Director of the National Institute of Allergy and Infectious Diseases] Dr. [Anthony] Fauci -- who was so active and so impressive from the beginning on this subject -- I had given him my request: "Please call me at any time when there was a breakthrough." Many times I went to the Clinical Center. I saw patients, sat with them. It was a heartbreaking experience. They were young. I saw these sunburned kids who were like my son, and there they were, dying. I started this -- visiting patients -- with a great sense of hope, but gradually that became transformed into a sense of the sadness of the whole problem. …
The bureaucracy rose to the challenge. As a result, there were many changes that did occur in a shorter period of time than has ever been achieved before, and this was very, very valuable time, because we were privately operating in the sense of an emergency, which was not so proclaimed to the country as such. …
So when you say unproclaimed emergency, describe that.
I felt that it was an incipient emergency which could occur at any time. We had nuns who were developing AIDS problems and dying in surgery. People were very afraid to go to their local hospital and have any surgical procedure because no one trusted the blood supply. … All the news stories about these unexpected experiences of AIDS deaths built up the myth that every gay person was unsafe to be with. … People became very nervous about this. …
In the beginning, I had to be totally indoctrinated on the problems of AIDS, but as time went on it was quite clear, so I tried to dispel these myths. For example, I contacted my former colleague from the House, [New York City] Mayor [Ed] Koch, and asked him to join me in visiting an AIDS patient at a hospice in New York. We simply met and sat and talked with this young man. I sat on the edge of his bed; we shook hands with him. It was simply to dispel the thought that just touching an AIDS patient would produce the transmission of the disease. …
We also went to the National Convention of Mayors. As the main speaker, I immediately shared with the mayors what the truth was, as we knew it, about AIDS. But this was a changing scene. …
What were some of [the] irrational fears?
Well, there were fears of waiters, being served by a person who might be homosexual: Was that potentially going to transmit a disease? At that point, we didn't know who was affected with this disease or not. The population already suffering from the AIDS virus, unfortunately at that time, were always in a very late stage of the disease. We later learned, many years later, that this testing had to take place much earlier and the diagnosis of the disease came much earlier, and this was a great help to the patients and to the public. People were afraid of hairdressers touching their heads and so forth. Any personal bodily contact in any way whatsoever was considered the subject of this enormous fear. …
My goal was to dispel myth and support confidence, but based on scientific information. And I have to say that the brilliant minds of NIH and CDC [Centers for Disease Control and Prevention] and the Public Health Service across the department were very, very supportive. …
If there were fears that were clearly unfounded, what was your thinking about getting the president involved in the effort to dispel some of the myths?
Because it was an ever-changing scene, if the president were to take a stand on one aspect and then were to be contradicted with our information, … this is not a situation in which a president would be speaking. It is too subject to contradiction, in certitude and in exactness. It would not be wise to have had him make any statement.
But the important thing was that on the scientific level, I was receiving this information. … There was a special pressure that our [weekly] meeting alone created. This was very fortuitous, because the end result was that everyone thought this had to be done as quickly as possible, and the whole machine of HHS started to use every tool available to turn out and find answers. That, I think, was the major contribution that I was trying to make, … to utilize the scientific brainpower of that great institute of NIH and HHS to resolve these human problems at every level.
That kind of effort takes money, and you mentioned having the restraints. How did you go about getting the funds that you needed?
Well, everyone was already on the HHS payroll, which was a very big asset, so we did not need new funding at that point. That allowed us to use the funding that existed in the separate budgets and all the allocations. Also, as the secretary, I had authority to transfer funds from other programs that were not as needy, and therefore, as a result, we didn't have a funding problem at that stage. …
There were a lot of people, though, who felt that more money should have been spent.
I disagree with that. I think that the wise investment that we made in terms of the existing talent -- scientific expertise at NIH is unparalleled, and we already had Dr. Fauci, [virologist] Bob Gallo and CDC. CDC was doing everything. I was pushing them to the maximum. ... The funding was already established for these operations, for these particular functions, so we didn't have the budgetary crunch.
Throwing money at the problem was exactly the kind of philosophy that President Reagan would have hated and was not authorized. [That was] one of the reasons that I supported him when he came in with his budgetary program and his whole package, his Reaganomics.
[First] you went to Meese and said, "I might need more money," and then later [you're] saying, "We can't just throw money at the problem"?
Well, because I would never just want money. Money is not a category, not a commodity to be simply used without purpose. The purpose was to resolve the problems. I just alerted him to the potential cost, and I had no sense of what that might be. But it is very important, in that period, to be conscious of what the drain on the economy, drain on my budget would be. It did not turn out to be as great as I expected, primarily because we had so much in-house expertise that was already budgeted.
Now, [at the] CDC in particular, ... [early AIDS researcher] Don Francis and others were saying that with $10 million or $20 million, they could do a bang-up job, and the money just wasn't there.
I didn't hear those comments, and it depends on what time. We were pushing the process and felt that the money actually was not our biggest problem. Our problem was getting scientific answers, and that funding was there. We did have to seek additions to our funding as time went on, and [HHS budget adviser] John O'Shaughnessy made presentations to the Bureau of the Budget. We got subsequent allocations and increases when necessary. …
Before we had the right strategy to deal with all the different aspects of this disease, it would have been very foolhardy to simply throw money at the problem. We had the best minds working on the problems, and we were making ... substantial progress. ...
I think that really, we could not have gained anything more by increasing the cash expenditures. We were in the right direction. We were placing the emphasis on those who could provide the answers. In a peculiar case, this was not a problem that money could solve; it was a problem that the scientists could solve, and so one had to balance the various segments of the AIDS dilemma. ...
I was so personally involved with the oversight of the whole [AIDS response], more so than any other program at that time, it dwarfed, in terms of time and energy and effort, any other investment I made in the department's main mission. It dwarfed any other category. ...
There are hundreds of programs in this department. While this was a very, very important one and my first priority, nonetheless, there were about 350 others, and there were requests for increases in many of the others. These were very important programs -- Medicare and Social Security at the time, and various other important programs -- so that in balancing everything, I would make certain decisions that I felt were the appropriate ones, while driving the engine of change and cure on the AIDS issue. ...
There are very difficult decisions to be made at all times. At HHS, one could have life-and-death decisions three times a day in various segments. ... But this is the nature of that department. It deals with life and death.
I had a very compassionate record in Congress, but there also is the need for some fiscal sanity, responsibility, and I also, living in a bureaucracy for the first time, could see that there were areas of waste. ...
[The number of people infected with the virus] turned out to be much higher than anyone expected. What was your reaction to learning [how many people were affected]?
I was relieved to know, because [for] once we had something concrete to deal with. It was tragic. ... But at the same time, knowing where you stand allows you to deal with reality, and that is an asset. ... We started to know what we had to deal with, and that pushed even greater change, because the number of people that were affected was so high.
Then in the pharmaceutical communities, there was a tremendous response. We were trying new drugs on a weekly basis almost. Then drug cocktails, putting medications together, and then the alternative responses and alternative products became available. They were very important, and they have been very important, in terms of dealing with the quality of life for many patients.
[How important was identifying the virus?]
Well, that was very important. It was a tool. It was a success because it was achieved in a very limited period of time, and if one looks at bureaucracies in general, they are known for lethargy, and this was a bureaucracy that responded with alacrity and with a wonderful spirit. I believe this. That was a great accomplishment on their part. ...
Tell us about [the press conference after Gallo identified the virus].
... We announced the identification of the virus, and that was a tremendously important announcement on the part of HHS and Dr. Gallo. At that time, this is the place where I do feel, obviously, that I misjudged. I worked with Dr. Gallo because he was briefing me constantly, as everyone was, and I have so much confidence in him, and so much respect for him. He had identified the human T-Cell leukemia virus. He had a track record that was impressive.
We anticipated the subject about a vaccine. When would a vaccine be available?, was the question. I listened to, again, the leaders of the department, who said they really didn't know, and I asked Bob Gallo, "What do you think?," and he said two years. In the press conference, I did say two years, and that turned out to be totally incorrect. But at that time, we did not know that the replication of the virus would be so difficult -- and it still is a problem. It was a scientific fact that had not ever entered the picture before.
This was the story of AIDS. There were new discoveries, lots of myths that we could easily dispel, but then very serious medical and scientific questions that had to be dealt with. ...
At the press conference, some people have said, well, it was too bad that the French did not get recognition at the press conference at the same time as Gallo.
I was such a supporter of Bob Gallo's; I really believed in him. It wasn't by any means a national issue. ... I was not well briefed on the French claims, and I had confidence in Gallo. He had kept me so informed, and he was a brilliant investigator, but also a zealous participant. He was quite confident at that time, and I derived my sense of confidence from my working relationship with him, and the results that he had produced. I really did feel that he had been the actual identifier of the virus.
Do you think he misled you?
No, not at all, no. I think he was also confident of himself, felt he had. In fact, he felt that way for quite a long time afterwards, after that particular meeting and before the final adjudication, before I left. I have no idea what his final attitude was. But I know that he was extremely knowledgeable and felt that it indeed had been his discovery, so that was transferred to me.
Between Bob Gallo and Tony Fauci, [they] were the two heroes. I would say Fauci first, because he took care of everyone, and I was very patient-oriented and very concerned about the patients, and so both of these [men] were remarkable. ...
[What is President Reagan's legacy?]
It has been a revisionist attitude, fortunately, for Reagan, after President Reagan's funeral. People have seen and started to measure the accomplishments of his presidency -- the downfall of the Berlin Wall and so many other things; the budgetary disciplines that he introduced to the world, which have helped other governments and have really set the pace in many areas. ...
There was an enormously deep dislike of Reagan. One heard him constantly introduced as or just defined as the movie star who had become the president. In fact, one night I told the president -- I was at a party with him and said, "Mr. President, I want to go home because one of your movies is on, and it's one that I haven't seen." He said: "Margaret, it's not worth your time. You know, I was in a number of grade B films." This was Reagan; this was a man of such humility, but a man of such talent and natural leadership and vision for the country and the world. But I think later that that view was corrected by reality, by certain things that in the world proved him right. ...
During the Reagan years, [I think] $5.7 billion was spent on research and on the AIDS problem. So he did speak [about AIDS], and in fact, he used the very words that I used from the beginning, which was AIDS is the highest priority of the Department of Health and Human Services. That I had established. ...
I turned out to be overly optimistic about our discovery of a vaccine, and that is where my enthusiasm went too far, because the department had performed so well. CDC was brilliant. The FDA was excellent in approving the blood products. The NIH was excellent, and Dr. Fauci could not have done more. Dr. Fauci was so dedicated that he never took time out for lunch. He simply came to my meeting in his white coat and went right back to the Clinical Center. That was the spirit. Now, he was extraordinarily devoted and conscientious about it. He was a driven doctor whose mission alone was to deal with this problem, and he was an inspiration. But others were outstanding as well.
I feel that HHS has never gotten the credit, that the scientific expertise has never been recognized for their effort and their performance and their achievements, and the caring and concern that turned this vast, massive ship of a department on the dime into a fast-moving, decision-making body that responded to the needs of the time and the needs of those young people who were dying in our hospitals. I think that the department deserved the highest marks.
I left shortly thereafter and went to Ireland [as U.S. ambassador], so this was not something I ever had the opportunity to say publicly, but I am so proud of what everyone did, and also the responsiveness to the needs. ...
There are so many comments made that are conjectural about President Reagan's views, but I think the time had not arrived. He was supportive; Ed Meese was supportive from the beginning. It was not until the science was securely resolved that he was on the kind of solid ground.
The other thing is that he had certain priorities of major consequence -- his Reaganomics, his economic policy, his war on communism; we were still in the Cold War -- and he had already ordained the areas in which he would place his greatest emphasis. In the meantime, at HHS, as his appointee and as recipient of powers which he delegated to me, ... I was doing everything possible in an activist fashion and basis to deal with the problem, and I think he was at peace about it.


Read more: http://www.pbs.org/wgbh/pages/frontline/aids/interviews/heckler.html#ixzz1Kyv5ni6T

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