And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (48 page)

As Cleve had wanted, the unobstructed picture of Gary Walsh and the other AIDS sufferers holding the “Fighting for Our Lives” banner had flashed all over the world. Marches in Houston, Chicago, Dallas, Boston, and other cities sparked some of the first local coverage of the epidemic. In New York, of course, the media, most notably
The New York Times,
was recalcitrant. Not an institution to get swept away by cheap sentiment,
The Times
relegated its coverage to a few buried paragraphs and did not make any reference to the fact that the outpouring of concern came largely from homosexuals. Instead, it called the crowd “mostly male” and left it at that.

It was four months since Gary Walsh had been diagnosed, when the nation’s AIDS caseload first exceeded 1,000 cases. According to figures released by the Centers for Disease Control on May 2, 1983, the day of the candlelight march, the number of new AIDS diagnoses in the United States had increased by 36 percent to 1,366 cases. About 38 percent of them, or 520, already were dead. This mortality rate belied the true prospective of death from AIDS. At least 75 percent of those who had the disease for two years were dead. Nearly half of the AIDS casualties were men between the ages of 30 and 39. Another 22 percent were men in their twenties. Of all the cases, 27 percent of these people had Kaposi’s sarcoma, 51 percent had
Pneumocystis carinii
pneumonia, 8 percent had both KS and PCP, while another 14 percent had different opportunistic infections, such as cryptococcosis, toxoplasmosis, or cryptosporidiosis. About 44 percent of the country’s AIDS patients lived in New York City, largely in Manhattan. In San Francisco, 169 people had contracted AIDS, including 47 who had died. Los Angeles, Miami, and Newark had the next highest numbers of AIDS cases.

Many mysteries remained with the epidemic. Gay men, who composed 71 percent of the AIDS victims, were virtually the only people who got Kaposi’s sarcoma, while the intravenous drug users rarely contracted anything but
Pneumocystis.
CDC speculators tended toward the idea that poppers might play a role in the development of KS, although there was no evidence for this because the CDC had not been able to conduct any further epidemiological studies due to lack of funds.

In fact, the CDC even had been forced to stop interviewing new AIDS cases because there weren’t enough staffers. They had been hearing from local public health agencies that more recently detected cases tended not to be drawn from the promiscuous, drug-using fast lane that characterized previous cases. This made sense because the contagion was so much more widespread now; a guy didn’t need 1,100 sexual contacts to run into somebody who carried the virus. In New York City and San Francisco, just a few partners could do the trick. The CDC could not launch educational campaigns to warn gay men about this, however, because it did not have the money.

Like Bill Kraus, many in the CDC AIDS Activities Office hoped all the media attention would change this. And like Bill, they would be disappointed.

“AIDS à l’Americaine,” Dr. Jacques Leibowitch thought when he watched the television coverage of the AIDS patients behind their banner in San Francisco. Parisian media was filled with talk of AIDS now too, largely because so much of the blood used in French transfusions came from the United States. It was so like Americans to expose themselves and march in big, dramatic parades. You’d never see anything like this in Paris, Leibowitch thought. This was distinctly American, like the Phil Donahue show, so naive and so distasteful.

Gary Walsh drifted through the first days after the candlelight march on a pink cloud of elation, but that faded as he found himself burdened by fatigue and depression. His friend Mark Feldman was back in the hospital with
Pneumocystis,
and people were saying he might not come out again. A week after the march, Marc Conant had found three new lesions on Gary. He was also losing weight.

On the rare occasions Gary felt up to making the short trek to Castro Street, strangers stopped him on the street to tell him how wonderful, brave, and courageous he was. Gary didn’t feel he was any more holy because he might die young. Having AIDS had not imbued him with any more wisdom than he had had before. Having AIDS was not beautiful; it was painful, miserable, and depressing. It was like being told you were going to die in a car accident at some point in the next year. Nobody told where or when you were going to die, just that you would perish. A mixture of anticipation and dread filled Gary’s spare moments. When he experienced a shortness of breath a day or so after seeing Dr. Conant, he wondered whether it was his mind playing tricks on him again.

May 1983

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

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

H
EARING OF THE
H
OUSE
S
UBCOMMITTEE ON
H
EALTH AND THE
E
NVIRONMENT,
C
APITOL,
W
ASHINGTON.
D.C.

M
R
. H
ENRY
W
AXMAN
: 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?

D
R
. E
DWARD
B
RANDT
: Yes, sir, that is a fair statement.

M
R
. W
AXMAN:
N
OW,
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?

D
R
. B
RANDT:
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.

M
R.
W
AXMAN
: N
OW
that you understand the complexity of the illness, why are you asking for funds to be reduced for the Centers for Disease Control?

D
R
. B
RANDT
: 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….

M
R
. W
AXMAN
: 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

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

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.