And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (45 page)

Although the commitment proved to be a boon to Robert Gallo’s lab, other AIDS research at the National Institutes of Health foundered for lack of money. When Jim Goedert and Bob Biggar had started their research on cohorts of Washington and New York City gay men in 1982, they had hoped they could learn what factors might lead some gay men to come down with AIDS while others remained healthy. Such a long-term study was essential to understanding not only the cause or causes of the syndrome but the natural history of the disease. By 1983, however, Goedert still did not have the funds to hire even a nurse to do the most basic tasks. The researcher had to drop plans to follow his Washington group. Just drawing blood and conducting physical exams on the New York cohort took six weeks. This left Goedert with mountains of data that could not be analyzed because he did not have adequate staffing.

Meanwhile, Jim Goedert’s conversations with Jim Curran thoroughly committed him to the idea that a new infectious agent was causing the syndrome. Moreover, his physical exams in New York had convinced him that the disease was wearing many faces, appearing as full-blown AIDS in some, lymphadenopathy in others, and even a vaguer malaise in many more.

Belatedly, Goedert discovered that the NCI lab where he sent his blood samples for AIDS did not have the capabilities to look for reverse transcriptase, the sure marker of retroviral infection. The tests were never run. Life as an AIDS researcher at the National Cancer Institute, he later remarked, meant “chronic frustration.”

At the National Institute for Allergy and Infectious Diseases, Dr. Anthony Fauci shared Goedert’s discontent. You needed a pot of gold to draw researchers, and such money was not forthcoming from an administration that was nickel and diming its way through an epidemic. Unlike the NCI, the NIAID saw no pressing need to accelerate its AIDS research. NIAID Director Richard Krause was dumbfounded at criticism leveled at his institute. It was the clinicians who were making the most noise, he noted, the doctors in the field with the patients. Sending money to them, Krause felt, would be like pouring funds down the drain; most had no experience in research. But the NIAID had a balanced portfolio of research on the immune system. In the field of battle, a wise general did not send troops scurrying every which way at whim. They were placed strategically, according to a plan. “How,” Krause wondered, “could it move any faster?”

Besides, he thought, there were plenty of centrifuges and culture disks in labs across the United States. The resources were there if the doctors wanted to use them.

C
ENTER FOR
H
UMAN
T
UMOR
V
IRUS
R
ESEARCH,
U
NIVERSITY OF
C
ALIFORNIA,
S
AN
F
RANCISCO

The talk about the French and American publications on HTLV made Dr. Jay Levy even more enthusiastic about looking for a retrovirus. All the publicity about AIDS, however, had created another obstacle. No lab would let Levy use its ultracentrifuge to experiment with blood from AIDS patients. Scientists were growing antsier about picking this horrible thing up in the lab. Levy, who only recently had experienced a six-month delay in getting a flow hood for the most basic lab research, found his AIDS research delayed once again, this time for lack of an ultracentrifuge.

April 12

C
APITOL
B
UILDING,
W
ASHINGTON,
D.C.

“In terms of AIDS, the Department [of Health and Human Services] has made a very strong commitment,” Secretary Margaret Heckler told a House appropriations subcommittee. “In fact, I have spoken to the head of the CDC personally on a number of occasions on the subject and there is no stone being left unturned to pursue an answer. This is a serious, very serious problem and every single research avenue of the Department is being directed toward the resolution of this problem…. The Public Health Service is going to use every dollar necessary to try to find an answer because the fatality rate of this disease is so staggering and so high that it threatens this whole society…. I have to say that, in the AIDS situation, I really don’t think there is another dollar that would make a difference, because the attempt is all out to find the answer.”

That afternoon in Atlanta, Don Francis again wrote a memo to Dr. Walt Dowdle, offering a far different assessment of the federal government’s response to the AIDS epidemic.

“Our government’s response to this disaster has been far too little,” wrote Francis. “Much of this is because the slope of the epidemic curve has been gradual, lasting years instead of days. We are not accustomed to dealing with outbreaks having long latent periods. But these situations require even greater speed because even after discovery of the cause, we will be so far behind and control will be even more difficult….

“The inadequate funding to date has seriously restricted our work and has presumably deepened the invasion of this disease into the American population…. Because of the slow and inadequate funding process, it seems that after we get funds and recruit staff, we are always too late—the disease has passed us up again and we are again understaffed and underfunded.

“There must be some way to do it right…. In this vast and wealthy country there must be a way to get $10 to $20 million immediately for this disease. I stress speed because the usual government funding
and
spending processes are so slow as to be unacceptable in such an emergency situation.

“For the good of the people of this country and the world, we should no longer accept the claims of inadequate funding and we should no longer be content with the trivial resources offered. Our past and present efforts have been and are far too small and we can’t be proud. It is time to do more. It is time to do what is right.”

S
AN
F
RANCISCO

Gary Walsh’s idea for a candlelight march had spread nationally by mid-April. AIDS sufferers in dozens of cities took the lead in putting together observances under the glare of newfound media attention. The San Francisco planning sessions for the protest, which had been named “Fighting for Our Lives,” were a scream. Gary traded the latest AIDS jokes with the other AIDS casualties. Should they play connect-a-dot with their lesions? How does Anita Bryant spell relief? Gary asked. A-I-D-S. One Kaposi’s sarcoma patient went to a meeting with a hankie marked with purple spots to signify his interest in “victim’s sex.” The latest quip on Castro Street concerned the news that the CDC finally had discovered the cause of AIDS to be track lighting on industrial gray carpeting.

Gary did hilarious imitations of himself lobbying the legislature in Sacramento for a bill to establish a panel that could assess the needs for AIDS funding in the state. “I’m dying of this disease,” he’d say. “How can you vote against it?” It was shamefully melodramatic, which only made Gary love it more.

They shared stories about acquaintances who tried discreetly to eye their lesions. Gary had called attention to those doing so, much to the chagrin of people who thought they were being ever-so-subtle.

They also shared their anger. They were sick of being called AIDS victims, because the semantics implied that they were passive and helpless at a time when they wanted to fight actively to regain their health. They were tired of being called AIDS patients because most of them weren’t in the hospital, the normal criterion for defining a patient. They wanted to be people with AIDS or, in the acronym-loving gay community, just PWAs. A nasty fight over such issues had broken out between the PWAs and the
Bay Area Reporter,
the idiosyncratic weekly that boasted the largest circulation of any local gay newspaper. Editor Paul Lorch had begun criticizing the various AIDS programs, such as the Shanti Project and the KS Foundation, as gravy trains for gay radicals, “wolves” and “AIDS pimps” out to leech a stricken gay community.

In a letter signed by a number of PWAs, including Gary Walsh, Paul Lorch was accused of a “sensational approach to reporting [that] only fuels the fire of fear, guilt, homophobia and adds to the everyday stresses of PWAs.” The letter asked that
Reporter
publisher Bob Ross either fire Lorch or resign from the KS Foundation’s board of directors. Ross was not impressed, and Lorch wrote a rather ungentlemanlike response.

“Had I from the first spoken louder—even more shrill—some of you might not be the marked men you are today,” wrote Lorch. “What’s more, I sense that your experiences have failed in making you bigger men. The letter reveals a reverse trend, a trend toward peevishness. What a time in your lives to be without honor. Taken to tattling. Exiting with a whimper…. For most of the names on your list, the only thing you have given to this gay life is your calamity.”

This rejoinder stirred more controversy.

Paul Lorch decided to exact his own revenge. He took the letter demanding his termination and the list of all the people who signed it, and set it aside. One by one, as they died, he crossed their names off the list, getting the last laugh, so to speak.

April 14

N
EW
Y
ORK
C
ITY

Larry Kramer arrived late for the meeting of the New York AIDS Network, but he didn’t think it would matter. Within days of Larry’s protest at the AIDS conference, Mayor Ed Koch had agreed to a meeting on April 20 with a maximum of ten people. Each organization in the network would send two. Larry figured that he and Paul Popham would represent the Gay Men’s Health Crisis. By the time Larry arrived, however, the ten representatives were chosen, including two from GMHC. Larry was not among them. Instead, Paul Popham and the executive director, Mel Rosen, would represent GMHC.

Larry Kramer was stunned and then he became angry. The meeting was all his work, he complained. He had organized the protest that pressured Mayor Koch into having the conference in the first place, not to mention the past eighteen months of
kvetching
on top of that. How could they leave him out? GMHC was organized in his own living room.

Paul said that his choice of Mel Rosen only made sense. The president and the executive director should be the two people who represent the organization. Privately, Paul shuddered at the notion of taking the easily incited Larry Kramer into a meeting with Koch. There was no telling when Larry would start screaming, and once the mayor was put on the defensive, he would dig in his heels.

Larry upped the ante. If he did not go to the meeting with Mayor Koch, he would resign from the board of directors.

Paul said that would be fine. Later that night, Paul polled the board of directors and found unanimous support for his position. Everybody was tired of the fighting, and that’s what being with Larry Kramer meant—fighting.

Larry was in shock. GMHC had been his family. It was all he had been doing for the past year, and now they were rejecting him. The fact that he always was half in love with Paul Popham made the rebuff all the more stinging. He hated them; he loved them. They had betrayed him. He was alone.

April 19

C
ENTERS FOR
D
ISEASE
C
ONTROL
H
EPATITIS
L
ABORATORIES
, P
HOENIX

Don Francis had typed up the speech he had given in New York and sent it off on April 12 to Kevin Cahill for inclusion in the AIDS conference book. As per CDC policy, however, the paper needed to be cleared by CDC higher-ups. Jim Curran sent it back to Don Francis with his handwritten notes.

“I would suggest omitting p. 10, and parts of pp. 9, 11, 15, 16 re: the ‘lack of resources’ available at CDC—Although I believe Don is correct,
in part,
there is little benefit to publishing this, esp. in a ‘political’ book.”

The censored comments included every remark Don Francis had made about the “ravages of budget cuts” and the problems of fighting an epidemic under an administration committed to reducing health spending. Making such extensive cuts in the manuscript would be difficult, Jim Curran noted, advising that “since this ms has been sent to Cahill, the revision may need an excuse.”

April 20

M
AYOR’S
O
FFICE,
N
EW
Y
ORK
C
ITY
H
ALL

There were two types of requests the New York AIDS Network took with them to their first and only meeting with Mayor Ed Koch at City Hall—the kind that cost money and the kind that didn’t. Mayor Koch warmly embraced the requests that cost the city nothing. Yes, he would declare a “state of concern” about AIDS for the week of the GMHC circus fund-raiser and the candlelight march. Of course, he would join Dianne Feinstein’s AIDS Task Force of the U.S. Conference of Mayors. He also supported confidentiality for AIDS patients and agreed that the federal government should be spending more money on AIDS research. He’d talk to the city’s lobbyist about pushing for more federal funds.