And the Band Played On

by Randy Shilts

  29

  PRIORITIES

  May 1983

  CENTERS FOR DISEASE CONTROL, ATLANTA

  Everybody had told Don Francis that Atlanta wasn’t really so bad, but it was. Don attended meetings around the clock; his wife Karen and their two children stayed in a motel until Karen found a house. For the first time since the Atlanta-Phoenix commuting began, Don felt he had a home again. However, he rarely had a chance to enjoy it.

  Battle lines were drawn between the CDC brass and the administration’s budget people on whether money for AIDS research should come from new funds or be redirected from other projects. The party line that health officials were forced to follow publicly was that the agencies had all the money they needed to fight AIDS, since they could divert money from other programs’ budgets for it. As far as the Office of Management and Budget was concerned, the $8 billion spent in the Public Health Service was generous enough to allow such diversions. At the CDC, where Don Francis was trying to put together the agency’s first AIDS lab, it meant chaos.

  He couldn’t believe the laboratories he needed to remodel; they were like something out of a Louis Pasteur movie, with copper and asbestos incubators. Researchers so far had improvised their labs. To pipe carbon dioxide into a room with viral cultures, for example, one virologist had indelicately used a screwdriver to smash a hole in the drywall so he could pull a rubber tube from the room with a carbon dioxide tank into the lab with the cultures. This is modern science? Francis wondered.

  Within a few weeks, Don Francis suggested that the CDC simply start spending money, even if it were not allocated to them. Congress would bail the CDC out; the agency should put itself in the red now, he argued. The more bureaucratically minded people shuddered at Francis’s brash strategy.

  Other AIDS researchers faced similar problems. The AIDS Activities Office ran wholly on a crisis mentality, jumping from one emergency to the other. There was never enough time to write up findings for publication. There were never enough lab people to study tissue specimens. There was never the opportunity to look at the subtler nuances of the epidemic, such as the role of possible co-factors. The CDC had yet to do a complete study on which sexual behaviors were responsible for spreading AIDS and which weren’t. At one point, Don Francis ordered a basic textbook on retroviruses, only to have the requisition refused. The CDC could not afford even $150 for a textbook.

  The announcement about the links between Human T-cell Leukemia virus and AIDS would be published within days in the Morbidity and Mortality Weekly Report, CDC Director Dr. William Foege knew. The data, from Drs. Robert Gallo, Max Essex, and Luc Montagnier, represented the first hard evidence pointing toward a specific virus. Gallo was actively promoting HTLV-I, while the French in recent weeks had become more outspoken in advancing their isolate as an entirely new virus. No matter which, Foege could no longer justify the delays in CDC funding. On May 6, he started writing a long memo to his boss, Assistant Secretary for Health Edward Brandt, to lay out his requests.

  “CDC is being pressed from many different sides for information about its resource needs related to the AIDS problems. The questions are coming in from gay groups, Congressional committees, individual Congressmen’s staffs, and even the Library of Congress. This heightened interest and concern has been stimulated by recently held appropriations committee hearings, media coverage of the HTLV lead, and demonstrations by interested groups.

  “We understand that various proposals to increase both the 1983 and 1984 funding for AIDS are being considered in Congress. This puts both PHS and CDC in the frustrating position of once again playing ‘catch up’ in regards to AIDS funding.

  “Clearly, we can effectively use additional funds and positions this year and we definitely should be expanding our efforts around in 1984. In fairness, I must point out that our plans and our resource estimates are based on what we now know about AIDS. We have not included estimates of resource needs beyond the first phase of the investigation. I anticipate that once we have identified an agent, our efforts will change direction, intensify, and our needs will escalate.”

  Attached to William Foege’s memo were fourteen pages crammed with studies the CDC would undertake if it had adequate AIDS funding, and the projects that would be cut if the administration provided no further money for AIDS and forced CDC administrators to gut other projects for bucks. The requests included the laboratory for which Don Francis was agitating, studies of Haitians and blood donors, an international AIDS conference, and expansion of field surveillance of the disease in New York, Los Angeles, and San Francisco. Altogether, the memorandum marked a new step for the epidemic, as its funding concerns now were being advanced to the level of agency chief.

  It wasn’t going to make a lot of difference. When the memorandum was released as part of a Freedom of Information Act request, a pen had slashed a black mark across its first page, underlining the word “withdrawn.”

  Monday, May 9

  HEARING OF THE HOUSE SUBCOMMITTEE ON HEALTH AND THE ENVIRONMENT, CAPITOL, WASHINGTON. D.C.

  MR. HENRY WAXMAN: I would like to take a few more minutes to go over with you the response of our government to the AIDS crisis…. Now, the first crisis was dealt with by the Centers for Disease Control, and the CDC had to divert some of its activities that it ordinarily undertakes for hepatitis, venereal disease, and other public health problems in order to meet the pressures of the AIDS epidemic suddenly staring them in the face.

  Congress came along and said, we realize you have a very difficult job to do; we are appropriating $2 million more. The Centers for Disease Control has spent $4.5 million last year on AIDS; is that a fair statement?

  DR. EDWARD BRANDT: Yes, sir, that is a fair statement.

  MR. WAXMAN: NOW, when the Reagan administration has submitted its budget for 1984, the request is not for $4.5 million or more to deal with an ongoing public health crisis; the request is for only $2 million.

  A few minutes ago, you said that this is a complex medical problem; it is an epidemic that we must deal with; it is a problem that must be solved. Your rhetoric was one of resolve. But the actions of this administration are one of neglect. How can you justify reducing the amounts of funds for the CDC to deal with this public health crisis when we are in the middle of this public health crisis, not the end of it?

  DR. BRANDT: Well, you know obviously one can always go back and look at one’s actions earlier and try to determine whether you would have done things differently, and I think in most instances everything would have been done.

  I think we followed leads as they developed, Mr. Chairman. This looked like a drug problem early on, and great attention was paid in trying to determine whether or not the use of certain drugs—I am not talking about illicit drugs—could, in fact, lead to immune suppression…. That is why the early efforts of the NIH were aimed in that direction.

  As that concept was rejected—largely on the basis of both animal studies at the NIH as well—we then moved toward the transmissible disease concept. That is why I think it is in the last few months that we have begun to more fully understand the complexity of the illness.

  MR. WAXMAN: NOW that you understand the complexity of the illness, why are you asking for funds to be reduced for the Centers for Disease Control?

  DR. BRANDT: I will have to go back and look at that. I heard you say that earlier. I was not aware that we had done that, and indeed information I was just handed is that the money will probably go up in 1984….

  MR. WAXMAN: I want to just conclude my comments with you to say that I am very disappointed with the administration’s response to the AIDS issue. In April 1982, we held a hearing in Los Angeles to look at the problem, and one of the leading CDC researchers told our subcommittee that the 300 cases were the tip of the iceberg. I am sure if he was telling us that information, he was telling the Reagan administration as well.

  That was April 1982.

  Not until a year later have we seen any funds go out from the NIH to do
research in this area, specifically directed to AIDS; and at least it is our information that the CDC is going to be cut in its own activities; and now with the Congress coming in saying to the administration, let’s set up a fund for you to deal with this crisis and other crises in the future, rather than saying to us, that is a constructive approach, you say you don’t mind the concept; you are not sure about the money, but you have the authority already to do it, but you are not doing it.

  I just think this is a very disappointing way to respond to the Congress in trying to deal with the problems….

  Privately, Edward Brandt’s own opinions were not that distant from Henry Waxman’s; moreover, Brandt knew that Waxman knew this; and Waxman knew that Brandt knew that he knew. Waxman personally respected Brandt, who was both a tough spokesman for the administration and a committed doctor as well. Brandt’s job was to stand behind his boss, President Reagan; Waxman’s job was to oppose him and try to protect the public health. All these components were in evidence when Waxman dismissed Brandt as a witness. “I know that you have a deep personal feeling and commitment to having the government do all it can,” said Waxman. “I know you don’t make all the policies for the Reagan administration. But, unfortunately, those who make the policies sent you down to talk to us and to take the sting of some of our unhappiness.”

  After the hearing, Waxman aide Tim Westmoreland, Representative Ted Weiss aide Susan Steinmetz, and Michael Housh, an aide to San Francisco Congresswoman Barbara Boxer, walked to Susan’s office, where they munched on sandwiches and plotted strategy. The hearing had confirmed precisely what they feared. Rather than admit to past deficiencies and try to reconcile itself to AIDS funding needs, the administration would make its health officials lie about AIDS resource problems. The aides needed to get together some kind of numbers to present as the funds needed for AIDS research, and they needed to do it fast. In order to appropriate supplemental funds for the 1983 fiscal year ending in October, they had to get the money passed by Congress within the next three weeks. To do that, they needed proof that AIDS research was being shortchanged.

  For her part, Susan Steinmetz was going to Atlanta the next day to study CDC files on orders from Weiss’s oversight committee on intergovernmental relations. Her private sources within the CDC told her there were some dandy memos from frustrated staffers to CDC brass.

  The Next Day

  CENTERS FOR DISEASE CONTROL, ATLANTA

  CDC Director William Foege wanted to make two points clear from the start. Susan Steinmetz could do whatever she wanted, but she would not have access to any CDC files, and she could not talk to any CDC researchers without having management personnel in the room to monitor the conversations. The agency also needed a written, detailed list of specific documents and files Steinmetz wanted to see.

  Susan Steinmetz was flabbergasted. What did they think oversight committees did? Their work routinely involved poring through government files to determine the truth of what the high-muck-a-mucks denied, and then privately talking to employees who, without the prying eyes of their bosses, could tell the truth. This was understood, she thought. She already had made a number of appointments for discussions with people like Jim Curran, Harold Jaffe, and Don Francis. She wanted to talk to them. Alone. And she wanted to see if CDC files yielded memoranda that proved what she suspected: that, contrary to government claims, AIDS researchers did not have all the funds they could use to battle this scourge. She couldn’t provide a list of memos when she had yet to establish their existence.

  To counter this, William Foege advanced a unique argument. All files contained the names of AIDS patients, he said. Therefore, if the CDC showed Susan Steinmetz the files, they would be violating the confidentiality of patients.

  Steinmetz explained again that she was interested in the policy aspects of the epidemic, things like planning, resources, and budgets. She wondered why an agency truly dedicated to confidentiality would be sticking peoples’ names into such files where they so clearly could be irrelevant.

  Complicated negotiations marked the next two days, with Susan Steinmetz filing frequent advisories to Washington, where Representative Ted Weiss had angrily staked out the obstructionism. CDC personnel, who struck Steinmetz as peculiarly contentious, wanted to conduct their own review of files before letting Steinmetz see them, but Weiss wouldn’t budge. They might throw away revealing memoranda, he figured. Ultimately, Steinmetz and the CDC hierarchy negotiated a fifteen-point process whereby they would pull files and delete names, although she could see the document, without the name, to ensure that the CDC wasn’t merely sanitizing their records.

  As another demand, the CDC insisted that before any interviews with CDC staff took place, the agency would screen questions that Susan Steinmetz put to scientists.

  This is getting pretty strange, Steinmetz thought. On the phone, other oversight committee staffers in Washington confided that they had never heard of an agency being so recalcitrant to Congress, particularly in a case such as this where the oversight would result only in the release of more funds.

  Finally, on the second day of Susan’s visit, Elvin Hilyer, the CDC manager coordinating her visit, abruptly announced that Steinmetz’s presence would no longer be permitted in the CDC building and that no agency personnel would be allowed to speak to her.

  Susan Steinmetz was crestfallen. Ted Weiss was furious. He fired off a letter to Health and Human Services Secretary Margaret Heckler, demanding immediate cooperation. Heckler said Weiss should proceed in a more “orderly” fashion and said she would have HHS officials help him once he outlined specific questions and areas of research. Weiss had no choice but to call Steinmetz back to Washington.

  In Bethesda, Steinmetz encountered many of the same problems at the National Institutes of Health. The National Cancer Institute officials issued a memo demanding that all interviews with researchers be monitored by the agency’s congressional liaison. At first, the National Institute for Allergy and Infectious Diseases was cooperative, but then, in an apparent NIH-wide clampdown, information became difficult to excavate there as well.

  May 12

  CAPITOL, WASHINGTON. D.C.

  The hearing before the House Appropriations Subcommittee on Labor, Health and Human Services brought out the panoply of the nation’s top health officials, including the directors of the NIH, CDC, NCI, and NIAID. A month before, Secretary Margaret Heckler had set the tone for testimony when she told Congress that “I don’t think there is another dollar that would make a difference because the attempt is all out to find an answer.” That was the policy of the Department of Health and Human Services and of these health officials. They would not have the luxury of partaking in “budget-busting” with these congressional representatives. Thus, when the ranking Republican on the subcommittee, Representative Silvio Conte of Massachusetts, pressed each agency director about the adequacy of resources, he was assured repeatedly that researchers had adequate funds and that if agency chiefs needed more money, they’d be sure to ask for it.

  “Are you equipped now to go ahead with your work on this?” Conte asked of William Foege.

  “As we have in the past, when we have a health emergency, we simply mobilize other resources from other parts of the centers…. If we reach a point where we cannot do that, of course, then we will come back and ask for additional funds, but at the moment that is the way we intend to handle it,” said Foege, who just six days before had privately written Edward Brandt that the CDC “clearly” needed more money.

  Dr. James Wyngaarden, director of the NIH, similarly stated that everything was going smoothly with AIDS research: “We have been investigating this problem of acquired immune deficiency for some time.”

  “Do you have enough flexibility within your existing resources, Doctor, to be able to respond adequately and quickly to this emerging health problem?” Conte asked Dr. Vincent Devita, director of the NCI.

  “…We have been able to respond quickly and I think cover every lea
d that we now have in this particular syndrome,” said Devita, who had written a memo to Wyngaarden just five weeks before, pleading for extra NIH funds for AIDS grants. “I think we do have a great deal of flexibility.”

  Dr. Richard Krause of the National Institute for Allergy and Infectious Diseases agreed that NIAID was “doing all within our power to learn how to treat this terrible disease.”

  Tim Westmoreland watched the hearing, thinking this was Washington at its worst. The witnesses were treading one step shy of perjury. Nor was that much of a secret. The Reagan administration wrote its policy on calculators in the Office of Management and Budget. Members of Congress and the scientists lying to them understood it. Later, some admitted privately that they knew they were making a mistake by lying, but they comforted themselves with the idea that they needed to keep their jobs to prevent their replacement by people who would make bigger mistakes. “If I were to leave, who would take my place?” they’d ask aloud. “With this White House…”

  Westmoreland was also surprised at the gullibility of the press. It was as if the initials M.D. or M.P.H. after these officials’ names had conferred upon them the credibility of Moses. Didn’t reporters know how to ask that tough second question? Or was it the more likely scenario, that they simply did not care?

  The Next Day

  HUBERT H. HUMPHREY BUILDING, DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON, D.C.