And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (32 page)

The different epidemiological trails AIDS was blazing led the small group of people involved in its research to one conclusion: This thing was getting much bigger. Moreover, the spread among such diverse elements of the population meant it was going to get much, much worse before it got even slightly better.

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

The start of the federal government’s new fiscal year on October 1 found the AIDS Task Force still scrambling for money. CDC budget managers had to prepare three budgets for its AIDS work before it submitted one that scaled down AIDS spending enough to be acceptable to the administration. When Wilmon Rushing, acting administrative officer for AIDS, sent the final budget to CDC management, he warned, “As you know, the attached budget is insufficient to adequately fund AIDS surveillance and epidemiologic studies. However, we will continue with the highest priority activities until additional funds become available.”

At the CDC’s hepatitis labs in Phoenix, Dr. Don Francis filed another memo asking for money to fund basic laboratory research. He talked up the $198,301 request as much as he could, prodding the CDC chieftains to make a quick decision. The virus was there, lurking about AIDS victims’ blood, he was sure. All he needed was the basic equipment. No answer was forthcoming from Atlanta.

The only glimmer of good news for government funding broke in October when the National Cancer Institute announced it was taking applications for a $1.5 million clinical research grant. Though it came over a year after NCI officials first intimated they would put some bucks behind their often-stated fascination with the syndrome, the news brought the first traces of hope for beleaguered clinicians like Paul Volberding at the UCSF Kaposi’s Sarcoma Clinic.

Then Volberding read the fine print in the cooperative agreement announcement. The $1.5 million grant was to be distributed over a period of three years at $500,000 a year. Moreover, it wasn’t going to just one hospital but was intended to be shared among a number of urban AIDS centers. Volberding’s heart felt leaden as he tried to create a budget request that would fit the application’s demands. He had ten scientists, many of whom were eminent retrovirologists and immunologists who had put other plans on hold in hopes for this chance to work on an important disease. Now he had to figure out a way to divvy up $500,000 among them. That, of course, assumed he would get the whole grant, an unlikely scenario.

The cuts Volberding would have to make were obvious, once he realized his priorities lay with the clinic’s pioneering treatments and immunology research. There would be no funding for epidemiology, even though San Francisco’s centralized and cooperative gay community gave investigators the best place in the world to study the spread of this disease. Without money for epidemiology, there certainly would be no way to figure which sexual practices spread AIDS most efficiently, or how to intervene and slow the transmission of the disease through public health education.

Just writing the grant meant begging word processors at the hospital and a constant scaling-down of what Volberding knew was needed to help stop the disease.

In Los Angeles, Michael Gottlieb, who had seen the first cases of
Pneumocystis
nearly two years before, was frantically trying to pare down his grant proposal, borrowing UCLA computer time and ignoring the frowns of colleagues who continued to urge him to get out of AIDS and back into a more “legitimate” area of scientific research. As the deadline for the grants approached, he drove to Santa Monica, where he found a gay man who volunteered to do the word processing of the complex request for nothing. Of course, the grant money would not come until well into 1983, Gottlieb knew, and it would not be enough to even start decent research. He was losing time, and time meant losing lives. He wondered how many people would die before the government took the epidemic seriously. What was the threshold of death and suffering society could tolerate?

He asked himself the same question later, after the gay man who had done the word processing for UCLA’s first request for an AIDS grant withered away and died of the disease.

The discovery of cyanide in Tylenol capsules occurred in those same weeks of October 1982. The existence of the poisoned capsules, all found in the Chicago area, was first reported on October 1.
The New York Times
wrote a story on the Tylenol scare every day for the entire month of October and produced twenty-three more pieces in the two months after that. Four of the stories appeared on the front page. The poisoning received comparable coverage in media across the country, inspiring an immense government effort. Within days of the discovery of what proved to be the only cyanide-laced capsules, the Food and Drug Administration issued orders removing the drug from store shelves across the country. Federal, state, and local authorities were immediately on hand to coordinate efforts in states thousands of miles from where the tampered boxes appeared. No action was too extreme and no expense too great, they insisted, to save lives.

Investigators poured into Chicago to crack the mystery. More than 100 state, federal, and local agents worked the Illinois end of the case alone, filling twenty-six volumes with 11,500 pages of probe reports. The Food and Drug Administration had more than 1,100 employees testing 1.5 million similar capsules for evidence of poisoning, and chasing down every faint possibility of a victim of the new terror, according to the breathless news reports of the time. Tylenol’s parent company, Johnson & Johnson, estimated spending $100 million in the effort. Within five weeks, the U.S. Department of Health and Human Services issued new regulations on tamper-resistant packaging to avert repetition of such a tragedy.

In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. No more cases of poisoning occurred beyond the first handful reported in early October. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, and spend money, lots of money, when they thought the lives of Americans were at stake.

Altogether, seven people died from the cyanide-laced capsules; one other man in Yuba City, California, got sick, but it turned out he was faking it so he could collect damages from Johnson & Johnson.

By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize public health officials, or issue regulations that might save lives.

The institution that is supposed to be the public’s watchdog, the news media, had gasped a collective yawn over the story of dead and dying homosexuals. In New York City, where half the nation’s AIDS cases resided,
The New York Times
had written only three stories about the epidemic in 1981 and three more stories in all of 1982. None made the front page. Indeed, one could have lived in New York, or in most of the United States for that matter, and not even have been aware from the daily newspapers that an epidemic was happening, even while government doctors themselves were predicting that the scourge would wipe out the lives of tens of thousands.

October 28

C
ITY
H
ALL,
N
EW
Y
ORK
C
ITY

A policeman led Larry Kramer, Paul Popham, and the rest of the delegation from Gay Men’s Health Crisis to a dark and chilly basement room in the bowels of City Hall. As the group surveyed the small chamber, furnished with a beat-up table and some straight-back chairs, the policeman mentioned that he couldn’t remember the last time he had seen the room used. That was a few minutes before 11 A.M., the time of their appointment with Herb Rickman, the gay staff man for Mayor Ed Koch and liaison to the gay community.

Kramer had looked forward to the long-delayed meeting with Rickman and had neatly typed an agenda of the points the group needed to cover. Although he was dubious that GMHC would get much from Koch—they had spent well over a year just to get this audience with a low-level aide—the meeting at least would give the group a chance to set out an agenda of items the city needed to be working on.

Kramer hoped that the sheer justice of the GMHC arguments would carry the day. The week before, the group had announced that it was now offering social services to people suffering from AIDS. Since virtually all the social services were those that public health agencies normally provide, Kramer hoped the city would at least help the group finance the growing GMHC staff. Even more significantly, gay men needed some aggressive health education. That certainly was the duty of the health department, Kramer thought.

By the time Herb Rickman arrived at 12:30 P.M., bustling with his own importance, even mild-mannered Paul Popham was irritated. Yet the mayor’s aide was all smiles and benevolence, apologizing for the ninety-minute tardiness and quickly acceding to all the group’s proposals. If San Francisco was putting money into community groups to fight AIDS, then the city of New York would equal what San Francisco was spending, dollar for dollar, the mayor’s aide said. Yes, he’d get Health Commissioner David Sencer on top of this epidemic right away, and of course, the mayor would issue a proclamation for an AIDS awareness week in the spring. The city’s commission on real property would find a building for the group, Rickman promised, and the mayor’s liaison to Washington would call the White House.

Even the ever-implacable Larry Kramer seemed in a good mood as he left the meeting that marked the first official attention the municipal government of New York City had lent to the epidemic. “We’ve finally got our foot in the door,” the men told each other.

“Considering how slowly the wheels of government move, we are making some progress,” Paul Popham told the
New York Native.
After the year of delay and the months of unanswered phone calls and bureaucratic runarounds, it all seemed too good to be true. And it was.

P
ARIS

Drs. Francoise Brun-Vezinet and David Klatzmann had gone to the New York University symposium on AIDS in September to present their data on “AIDS in France: The African Hypothesis.” Their theory was that AIDS had come out of Africa, since so many of the early cases were among Africans and Europeans who had been to Central Africa shortly before falling ill. The African connection was all the talk of European AIDS researchers. Not too many months before that, Copenhagen’s Dr. Ib Bygbjerg, recalling the horrible death of his friend Grethe Rask, was derided for linking AIDS to infectious tropical diseases. Now, scientists in Brussels and Paris raced to be the first doctors to publish on the cases of
Pneumocystis
and virulent Kaposi’s sarcoma from the late 1970s.

Two distinct waves of the AIDS epidemic were sweeping Europe—the first dating back at least five years to Africa, and the second, more recent, among gay men who had contacts with American homosexuals, usually in New York City.

What had excited Brun and Klatzmann, however, was the scientific gossip about Human T-cell Leukemia virus, or HTLV, as the cause of AIDS. Dr. Robert Gallo at the National Cancer Institute had long hypothesized that HTLV had an African origin, being carried to Japan by Portuguese who had stopped in Africa on their way around the Horn in the late fifteenth century. HTLV was also endemic to the Caribbean, where the disease was festering among Haitians. Brun found the theory intriguing, given her studies into HTLV under Dr. Luc Montagnier at the Pasteur Institute. Klatzmann, meanwhile, had spent much of the past year working up immunological profiles on Willy Rozenbaum’s AIDS patients.

Brun and Klatzmann were also part of the working group on AIDS that Dr. Willy Rozenbaum and Jacques Leibowitch had organized early in the year. After returning from New York, the researchers eagerly shared the talk about HTLV at the next European group meeting. They decided to try to enlist retrovirologists to study the hypothesis, hopefully at the Pasteur Institute, France’s most respected scientific institution.