And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (49 page)

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

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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 lead 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

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Ed Brandt would have preferred not to be in his office that day. The Oklahoma City native had planned to stay only two years on the job, after being pulled from his post as assistant chancellor for health affairs at the University of Texas to join the Reagan administration. He figured he owed it to himself and his country to put to work finally all those less-government-is-better ideas he’d been espousing his whole career. He had talked about leaving when Reagan’s first HHS secretary, Richard Schweiker, resigned last year, but Schweiker had persuaded him to stay on and help the transition.

At the start, Brandt had viewed AIDS as a minor problem. It would be poppers, the experts told him, so he hadn’t cared much. Now, the blood transfusion cases had instructed Brandt otherwise, and he figured it was his job to hold a steady course.

Although a Baptist Sunday School teacher, Brandt wasn’t big on proselytizing other peoples’ morality, and he was too much a doctor to see AIDS as some curse from the Almighty. Already, however, some of the more conservative doctors in the administration, the religious ones who came on board with Reagan, were alluding to the God’s-curse theory and wondering whether too much money wasn’t going into AIDS research. There were letters too, like the one from the second-grade teacher who said her mom suffered from multiple sclerosis. “Why are these homosexuals getting all the research money and my mom with MS isn’t? Are they something special?”

Ed Brandt saw it as his job to keep rational about this. Some mid-level White House types had tried to jump the AIDS bandwagon by writing legislation that would make it a crime for a person with AIDS to donate blood. Dr. Brandt had squashed that fast. There was no evidence that AIDS patients were streaming into blood banks, he noted. There was an element of meanness to the proposal that bruised the doctor’s midwestern sensibilities—like the White House guys enjoyed kicking a guy when he was down. That wasn’t American.

Brandt was, however, a loyal follower of President Reagan, whom he truly respected. He had played the role for months now, holding back the line on health spending, the way he believed it should be held.

Today, that was going to have to change. Brandt didn’t believe in throwing money at a problem, but he didn’t believe in starving science either, especially, when Americans were dying. AIDS, he now saw, was simply too important to have its funding scuttled from this or that program. He started writing his memo to the Assistant HHS Secretary of Management and Budget.

“It has now reached the point where important AIDS work cannot be undertaken because of the lack of available resources,” he wrote. The CDC needed new money, not just the money that they were pirating from other budgets. He listed the “important prevention programs” that had been “postponed, delayed or severely curtailed” by the funding diversions. “…1984 will represent the third year in a row that we will be faced with major reallocation of resources to the AIDS program,” Brandt wrote. “Such long-term diversion of resources will have a detrimental effect on CDC’s important prevention programs.”

The memo was written just four days after Dr. Brandt told a House subcommittee that a Public Health Emergency Fund was “unnecessary” because “existing budget and appropriations processes are effective in funding these [AIDS] activities.”

Seeing catastrophe ahead, Dr. Dan William asked the owner of the St. Mark’s Baths, a four-story facility that advertised itself as the world’s largest bathhouse, to a restaurant for dinner. William laid out his plan. He was convinced that AIDS was caused by a new virus, being spread sexually. The overwhelming preponderance of his patients were people who went to the bathhouses. Obviously, bathhouses existed solely to provide the opportunity for the maximum number of sexual contacts. Nobody was saying the places should be closed down, William explained to the proprietor, but the bathhouses had a great opportunity to take the leadership role in promoting a new type of gay club.

William was quite taken with his idea. “The New Safe St. Mark’s,” he said. The bathhouse could take the doors off the private rooms, turn up the lights to discourage orgies, and orient the sex more toward video eroticism in which gay men could masturbate with each other but avoid the exchange of semen that probably spread this thing.

“People can do what they want to,” William recalled that the owner responded. “I have no right to direct their behavior.”

On its multi-storied premises, the St. Mark’s Baths had put up two signs, measuring 28 by 11 inches, warning patrons that some doctors believed AIDS was sexually transmitted, and some time later the dormatory, where group sex was practiced, was closed.

It was only later that the economic implications of his eager suggestions occurred to William. Of course the bathhouses would not want to emphasize that a sexually transmitted disease was loose, killing their patrons. It would destroy their business. William realized that he might have been around doctors too long. He couldn’t imagine anyone not wanting to act to save lives if they possibly could. The notion that some people might place personal profit above human life was utterly foreign to him.