And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (37 page)

Don Francis was enraged. The blood banks were going to kill people, he fumed, and the FDA wasn’t going to do a damn thing about it.

Harold Jaffe was not given to such dramatic pronouncements, but he was equally disappointed. He couldn’t believe what he had heard from the blood bankers. They did not want to believe their industry could be involved in something as horrible as AIDS, so they had simply denied the problem existed. To a large extent, the same thing was happening in the gay community, Jaffe knew, but the blood bankers were doctors and scientists of a sort. They were supposed to be rational and most had sworn to uphold the Hippocratic oath.

It had been a year since Bruce Evatt had heard of the first suspected AIDS case in a hemophiliac. He had expected more cases at that time, but the problem was growing much faster than anyone had expected. He had not anticipated that the CDC would be so definitively thwarted in its influence on public policy. The CDC had stood alone and lost. In history, he knew, it would all go down as a stupid mistake, a terribly stupid mistake.

The year 1983 was going to be that kind of time for the AIDS epidemic. There would be denial on all fronts, leading to stupid mistakes that would cost thousands of lives in the short term and tens of thousands in the long term. The lost opportunities of 1982 would be explained later with the chorus: “How were we to know?” This had no meaning in 1983. By then, vast numbers of people knew better, but confronted with knowledge and the chance to do something, they usually did the wrong thing, if they did anything at all. At the time, their postures seemed like the right thing to do in order to preserve civil rights or, say, the economic viability of the blood industry. The problem, of course, was that such considerations constantly overshadowed concerns of medicine and public health.

Two days later, after the fateful meeting in Auditorium A, the American Association of Blood Banks convened a Washington meeting with all the major blood banking organizations, as well as the American Red Cross, the National Gay Task Force, and the National Hemophilia Foundation. Under prodding from gay representatives, the groups issued a joint statement reiterating the blood banking industry’s opposition to donor screening. “Direct or indirect questions about a donor’s sexual preference are inappropriate,” the statement said. Dr. Roger Enlow, a New York City gay physician and a leader of the American Association of Physicians for Human Rights, heralded the policy. “We’ve preserved not just gay rights,” he said, “but the human right to privacy and individual choice.”

January 6

R
AYBURN
H
OUSE
O
FFICE
B
UILDING
,
W
ASHINGTON,
D. C.

Tim Westmoreland returned from Atlanta more convinced than ever that AIDS was the very public health crisis he had feared when he first read of the Reagan administration’s proposed health budget cuts two years ago. He pressed his investigations of CDC and NIH funding harder. The revelations about transfusion AIDS had created an unprecedented level of media attention to the epidemic, finally. How would the NIH respond to questions about its dismal handling of the epidemic, Westmoreland wondered.

The answer was between the lines of a memo from the National Institute for Allergy and Infectious Diseases, or NIAID, that arrived in the health subcommittee’s office that Thursday morning. The memo claimed that NIAID had financed a “large effort” in the past fiscal year, doling out $22 million for the study of immunoregulation, another $2.4 million for immune deficiency conditions, and $1.3 million for research into cytomegalovirus. Altogether, the NIAID position paper concluded, “The level of support of NIAID’s portfolio for studies relevant to patients with AIDS is approximately $26 million.” The phrase “studies relevant to patients with AIDS,” Westmoreland knew, was the operative lie of the document. Buried in another paragraph was the agency’s admission that it was devoting only $750,000 of funds directly to intramural AIDS research. Since a bout with the common cold technically involved the immune system, NIAID simply was claiming that such studies were “relevant to patients with AIDS,” even if the research was only tangentially related to the syndrome.

That week, Bill Kraus talked to Dr. Robert Gordon, one of a long succession of NIH coordinators for AIDS, to ask whether there were any problems with AIDS funding. Congress would be no barrier to getting more money, Kraus said.

No, answered Dr. Gordon, the NIH funding for AIDS was “more than adequate.”

January 7

The
Morbidity and Mortality Weekly Report
on AIDS among female sexual partners of male AIDS sufferers established what would be the last major risk group for Acquired Immune Deficiency Syndrome. Mary Guinan had been railing about “semen depositors” for more than a year, but the publication of the two case histories of New York women with AIDS finally put a “heterosexual contact” category on the CDC’s official list of AIDS risk groups. One thirty-seven-year-old woman, suffering from
Pneumocystis,
lived for five years with an intravenous drug user who had died in November, the
MMWR
reported. A twenty-three-year-old Hispanic female with lymphadenopathy had no risk for AIDS other than living for the past eighteen months with a bisexual who had developed both Kaposi’s sarcoma and
Pneumocystis
in June 1982. The account also noted that the CDC had received reports of forty-three other previously healthy women who had developed either
Pneumocystis
or other AIDS-related opportunistic infections, mainly after having sexual relations with intravenous drug users. Although none of the men had contracted AIDS, the CDC concluded, “Conceivably these male drug abusers are carriers of an infectious agent that has not made them ill but caused AIDS in their infected female sexual partners.”

Another summary in that issue of the
MMWR
also hinted at the shape of things to come, with the first official report on the growing problem of AIDS in prisons. Most of the ten New York state prisoners discussed in the narrative were intravenous drug users, as were all of the New Jersey AIDS prisoners. In fact, prisoners accounted for six of the forty-eight AIDS cases in New Jersey.

Both
MMWR
reports gave greater weight to the idea that gay cancer wasn’t so gay anymore. Now AIDS became more newsworthy, particularly as the implications of transfusion AIDS sunk in. Because any chance accident might put one in need of a transfusion, just about everybody was now at risk for AIDS, it seemed.

Pressure mounted on the blood industry in the weeks after the Atlanta meeting to protect “innocent victims.” The National Hemophilia Foundation enraged gay activists by calling for “serious efforts” to bar all gay men from donating blood. The for-profit blood-products manufacturer soon fell in line with the foundation, unable to take the commercial risk of offending hemophiliacs, a major market for blood products. The non-profit blood bankers, however, continued to oppose such deferrals as “premature.” Meanwhile, gay groups across the country were organizing to oppose what they called the “quarantine” of gay blood.

Blood bankers were quick to pick up the gay rhetoric. At an AIDS study group at the University of California in San Francisco, where Dr. Marcus Conant was trying to engineer a strong university position for hepatitis antibody testing, the staid medical director of San Francisco’s Irwin Memorial Blood Bank took his arguments against surrogate testing straight from the lexicon of militant Gay Freedom Day speeches. The hepatitis testing would end up marking gay men with a “biological pink triangle,” said Dr. Herb Perkins, alluding to the emblems gays wore in Hitler’s death camps. “If 95 percent of gay men are antibody core positive, do we want them marked to exclude all blood with this marker?” he asked.

Conant was unimpressed by Dr. Perkins’s oratorical flourishes. He knew more than civil rights was involved with the blood banks’ refusal to test blood or defer donors. It was dollars and cents, both in increased testing expenses and for the larger recruiting drives needed to replace gay donors. Conant had no doubt that self-deferral of donors could prove to be a disaster. Too many gays were in the closet, and those who weren’t tended to view AIDS as a problem for sleaze-bag gays, the bad homosexuals, not themselves.

Within two weeks, Conant had enlisted the major AIDS experts from UCSF, as well as the highly respected dean of the medical school, to issue a public plea to blood bankers in New York, Los Angeles, and San Francisco to start hepatitis core antibody testing.

The blood banks ignored the statement. Perkins insisted that the call for surrogate testing was “not based on any rational evidence that it would screen out everyone with AIDS, or anyone who was incubating AIDS.”

January 13

S
AN
F
RANCISCO
C
ITY
H
ALL

The ragtag cluster of White Panthers smirked at the voter registrar’s clerks when they presented their grocery boxes of petitions for certification. Word swept through the broad marble corridors of City Hall, stunning political veterans who had long ago written the Panthers off as scraggly gun-toting malcontents. The voter registrar confirmed, however, that they had collected some 35,000 signatures, largely from the heavily registered precincts around Castro Street. This was far more than the 19,000 signers needed to put the recall of Mayor Feinstein on the ballot, and the special recall election was set for April.

Upstairs, in her large paneled office, the mayor broke down and wept when she learned that she would be the first San Francisco mayor in thirty-six years to face a recall. Although she referred to it publicly as a “guerrilla attack on our system” by a “small eccentric fringe group,” she had no doubts about where the recall organizers had drawn their support in those angry days after the veto of the domestic partners’ ordinance. As gay leaders gathered for their weekly meeting with Feinstein that afternoon, she chided, “Well, you’ve had your revenge.”

Even some of Feinstein’s longtime supporters chortled, enjoying the fact that they truly had exacted some retribution for the domestic partners’ veto. Few could have imagined the impact the recall election would have on the lives, and deaths, of thousands of San Franciscans for years to come.

January 18

P
ASTEUR
I
NSTITUTE
,
P
ARIS

Francoise Barre peered at the cultures where the tissue from the biopsied lymph node had been set fifteen days before. She was at a loss to understand why, but her lymphocytes seemed to be dying off. This was the opposite of what the scientist expected. When HTLV infected lymphocytes, the virus caused the white blood cells to replicate madly, creating the overabundance of lymphocytes that is called leukemia. Barre added new lymphocytes to ensure that the culture stayed alive. She worried that she might be doing something wrong, but persevered in her calm, methodical way.

That Afternoon

U
NIVERSITY OF
C
ALIFORNIA
,
S
AN
F
RANCISCO

Marcus Conant knew the minute he saw the first lesions that Gary Walsh had Kaposi’s sarcoma. Conant had worked up Gary completely just a few weeks ago, right before Gary left for Key West. Conant had examined every inch of his skin. The three small spots, two on his right calf and one on his left, were new.

“I’m not going to play games with you,” said Conant. “I think it is KS. We’re going to have a biopsy. It may take ten days to confirm it. I understand that this will be ten days you spend in limbo, but we have to make sure.”

Gary was anxious as he dressed to leave. In the hallway, Conant quietly told his nurse to write on Gary’s chart that he had Kaposi’s sarcoma.

January 23

A
TLANTA

As president of the nation’s largest gay community AIDS organization, Paul Popham was making the circuit of appearances at the new AIDS groups sprouting up around the country to provide information and support services for victims of the new disease. Paul enjoyed the opportunity to travel. The fledgling AIDS activists in the hinterlands always came away from his talks all gushy about the hunky guy from New York who was out there in the trenches, still keeping his cool.

The debate over the civil rights aspects of blood donations raged everywhere; it was the first topic of conversation between Paul Popham and CDC’s Jim Curran as the pair waited their turn to speak at the Aid Atlanta organizing event. Paul echoed the fears Curran was hearing so much lately, about how AIDS might be used as a medical pretext to round up homosexuals and put them in concentration camps.

“I know I’m not going to get AIDS, and I’ll be damned if I’m going to spend the rest of my life in some camp,” said Paul, in his friendly Oregonian way.

Curran thought the train of thought was curious. After all, nobody had suggested or even hinted that gays should be in any way quarantined for AIDS. The right-wing loonies who might propose such a “final solution” were not paying enough attention to the disease to construct this Dachau scenario. Still, it was virtually an article of faith among homosexuals that they would somehow end up in concentration camps.

In fact, such talk had been around even before AIDS, back when Anita Bryant and California State Senator John Briggs had mounted their campaigns to protect children from homosexual teachers.

P
ASTEUR
I
NSTITUTE
,
P
ARIS

Every three days, Francoise Barre returned to her lymphocytes to see what might be growing from the lymph node tissue. It was late on this Sunday afternoon when she got around to running the radioactive test to detect the presence of reverse transcriptase, the enzyme that enables the reproduction of retroviruses. She found the radioactivity to be 7,000 counts per minute. The level was significant but still was not proof that a retrovirus was indeed growing in the culture. She may have been measuring some extreme background radiation. Three days later, the harder proof came. The radioactive assay now measured reverse transcriptase at a rate of 23,000 counts per minute.

This was not background radiation; this was a retrovirus. Moreover, it did not seem to be the Human T-cell Leukemia retrovirus. Although the reproduction of the retrovirus seemed to be peaking, it was killing off her cell line. Had she not added the new lymphocytes earlier, Barre would have missed seeing the virus altogether because all the cells would have been killed by the extraordinarily lethal retrovirus. That, she would learn later, was what had happened in the laboratories of both the Centers for Disease Control and the National Cancer Institute. The viruses had killed off the cultured cells again and again while the scientists waited for the infected lymphocytes to proliferate, the way white blood cells proliferate when infected with the Human T-cell Leukemia virus, HTLV.

Barre explained her discovery to Luc Montagnier and Jean-Claude Chermann. She had a human retrovirus, she said, but it was not behaving like HTLV. It was a new retrovirus.

New human viruses aren’t discovered very often; the scientists knew that they would have to present exhaustive evidence to have their claim believed. Moreover, it would take more evidence to establish that they had found the virus that could be the cause of the “mystery disease,” as SIDA was most commonly called in those early months of 1983. A number of tests needed to be run to validate their results. They needed to get antibodies to Robert Gallo’s HTLV to ensure that theirs was not the previously discovered virus. Ultimately, the researchers would need to take a picture of the virus through an electron microscope and characterize its genetic properties.

Montagnier decided to hold off telling the excitable Dr. Rozenbaum about the discovery until they were more certain; he didn’t know whether he could stand the young doctor’s unrestrainable enthusiasm just yet.

January 24

C
ASTRO
D
ISTRICT
, S
AN
F
RANCISCO

The weeds grew wild and rangy in the summer here, on this desolate outcropping of granite that jutted above Castro Street; in the winter, they turned brown, jerking stiffly in the cold January wind. Among them, Gary Walsh could see new buds as well, the harbinger of spring growth. Gary came to the promontory when he was troubled. He’d stare at the little village of Castro and the larger city that lay far beyond, shimmering by San Francisco Bay. Tomorrow morning, he would leave his Alpine Terrace apartment and see Dr. Marcus Conant again, and although he hoped Conant would grin broadly and tell him it was a false alarm, he knew that wouldn’t happen. The spots on his legs were not a false alarm. He had AIDS and, tomorrow morning, Marc Conant was going to tell him that the biopsy confirmed Kaposi’s sarcoma.

As Gary surveyed the village below him and watched the weeds in the wind, he was surprised at how much more he was seeing, how every sight had extra color and more palpable texture. Intellectually, he understood why. He might never see another winter. As if for the first time, he was actually taking in the feeling, the entire sense of the moment as he had never before. It was what he had long been seeking in his years of self-exploration and his career in psychology—to be so totally in touch with the moment, with now. In a strange way, he began to feel as blessed as he was cursed.

Matt Krieger was ebullient when Gary Walsh called. He had made Gary a photo album of a trip they had taken together to Mexico. He had wanted to give the album to Gary for Christmas, but Gary had been in Key West. Gary dallied in pleasantries only briefly.

“I’m calling because I want to tell you something,” he said. “I have AIDS and I want to tell you myself. I don’t want you to hear about it on the grapevine.”

They talked briefly. Matt wanted to tell Gary how much he loved him, how he wanted them always to be friends even if they weren’t lovers. But he didn’t want to push too hard on his independent former lover. Not now.

For the rest of the night, Matt was devastated. This was what he had warned Gary about over a year ago, after organizing that press conference with Marc Conant, and now his most fearful nightmare had become reality.

Late that night, Gary poured himself a snifter of cognac, put Beethoven’s Fifth Symphony on the stereo, and pulled out his small cassette tape recorder.

“There have been some incredibly special times during the past few months that leave me very, very rich: spots I could not have gotten to without the spots that are on my leg,” said Gary. “It seems amazing to me how rich this time can be, how much I’ve enjoyed touching that inner self. It’s like it’s never been touched before…. And all the hell you bear along the way, including this fucking disease, it all seems to be helping to get me to a spot where I can rest peacefully, whether it’s living or whether it’s dead. I want this spot, this connection with the beauty around me more than I’ve ever wanted a lover—because it is my lover. It’s what you can always carry with you, where you can understand everything….”

The strings of the Beethoven symphony played dramatic crescendos as Gary planned his approach to his disease, the way he’d explain it in a therapy session. “It’s important for me to keep a very close watch on this time. It would be so easy to think I’m not even going through this. It’s an interesting time. I would not miss it for the world—what it’s like to go through this unfolding.”

The Next Morning

U
NIVERSITY OF
C
ALIFORNIA
,
S
AN
F
RANCISCO

Gary Walsh was visibly agitated when he stepped into Marc Conant’s examining room. Conant hated giving out these diagnoses. It wasn’t the kind of talk dermatologists usually have with their patients. Conant confirmed the diagnosis and the pair talked about possible therapies. Gary said he’d talk to his own internist about the further course and get back to Conant.

Gary slipped out of the office. Conant glanced down at the chart. There would be a lot of Gary Walshes in the years to come, he knew, and they were all going to die. Conant had to remain fixed to this reality, even as friends and colleagues sometimes told him that he was overly pessimistic. It would be even worse if he really believed he could save these people, Conant felt, because it would make it that much worse when they died. He put the chart aside. In the next waiting room was another bright young man, not unlike Gary Walsh, who had come in worried about some purplish spots he had found the day before on his thigh.