And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (12 page)

F
IRE
I
SLAND
, N
EW
Y
ORK

A brisk breeze blew off the ocean and over the sand where Paul Popham and a small cluster of friends trudged, carrying a small box. Tourist season wouldn’t open for another month, so they had the island to themselves, except for a few merchants and homeowners out to check the damage from the winter storms. Paul looked toward Bob, who was holding the ashes of Rick Wellikoff. He never knew what to say at times like this so he didn’t say anything at all. The group had walked past a boarded-up disco and the tightly shuttered houses, out to where there is just sand and sky and sea. That’s where the fifth-grade teacher from Brooklyn had wanted his remains to be spread, off the beach of the island he had loved so much. As the sun began its westward tumble toward twilight, Bob poured out the white gritty ashes, and Rick was gone into the cold gray Atlantic. Maybe now, Paul thought, he could put this behind him.

April 28

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

“What do you think about those five cases of bone sarcoma in homosexuals they’re investigating at State University of New York?” the doctor asked Sandy Ford.

Ford said she had never heard of any such study. After she hung up, the conversation gnawed at her. They were investigating something about homosexuals in Queens at the same time she was getting all these strange pentamidine orders. There had been two more orders in the past two weeks for patients with unexplained immune suppression. One of them was from the Manhattan doctor who previously had seemed so inept to Ford. He alone had now made five orders for pentamidine in three weeks. Since February, she had filled nine orders that were all tinged with similar shades of mystery.

The unknowns went against the methodical streak in her attentive nature, so on that Tuesday afternoon, Sandy wrote a memo to her boss, the deputy director of parasitic diseases, and told him about the nine drug orders and the gossip about the bone sarcoma. That was how the thorough GS-7 drug technician in Room 161 of the Centers for Disease Control’s Building 6 alerted the federal government to the new epidemic.

Sunday, May 17

W
EST
L
OS
A
NGELES

Michael Gottlieb and Wayne Shandera sat at Shandera’s dining room table surrounded by stacks of medical charts in neat manila folders. Gottlieb had heard that Alvin Friedman-Kien was working on a Kaposi’s sarcoma study in New York, and he was eager to get his paper out before Friedman-Kien’s. Shandera hit on the idea of publishing the PCP reports in the Centers for Disease Control’s weekly newsletter, the
Morbidity and Mortality Weekly Report,
known to doctors just as the
MMWR.
The 6 X 8’/2-inch booklet was mailed every Friday to thousands of hospitals and health agencies internationally. Everybody who was anybody in public health or infectious diseases read its updates on every blip in the nation’s physical well-being, along with the weekly state-by-state breakdowns on every new case of just about every infectious disease, from anthrax to rabies and typhoid. Although the publication did not carry the scientific prestige of, say, the
New England Journal of Medicine,
publication required virtually no lead time. In early May, Shandera had called Dr. Mary Guinan, an old friend at the CDC venereal disease division, and she said she’d get whatever report they wrote into the right channels.

The report required a case-by-case detailing of this new phenomenon. Gottlieb talked through the charts while Shandera put the information into the dry, turgid prose that the
MMWR
preferred. The report noted the links between PCP, CMV, and the oral candidiasis that commonly preceded the pneumonia, and stated: “The fact that these patients were all homosexuals suggests an association between some aspect of homosexual life-style or disease acquired through sexual contact and
Pneumocystis
pneumonia in this population.”

The next day, Shandera phoned in the report, entitled simply
“Pneumocystis
pneumonia in homosexual men—Los Angeles.”

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

Dr. Mary Guinan sent the paper to Dr. James Curran, her boss at the VD division. He sent the paper back to her with a four-word note: “Hot Stuff. Hot Stuff.”

Word spread around the agency about the paper CDC was going to publish on PCP. Guinan got another call from a CDC staffer in parasitic diseases. “There are a lot of people dying of PCP in New York City, but nobody will tell us about it,” he said. Apparently, the doctors had some paper that was in the review process for a scientific journal, and they couldn’t breathe a word about the PCP outbreak for fear of losing their shot at the prestigious publication credit. Already, a Manhattan gay newspaper, the AW
York Native,
had published a story about the rumors of a new killer pneumonia striking gay men, but the CDC liaison with the local public health department had pooh-poohed the gossip, telling the paper that the rumors were “unfounded.”

This isn’t right, Guinan thought. We’d better investigate.

May 30

S
AN
D
IEGO

Congratulations were in order, thought Dr. David Ostrow as he prepared his speech for the CDC’s annual sexually transmitted disease conference. The gay community had played a key role in the development of a vaccine for hepatitis B, a major international health problem, and it was time the medical world took notice. For the past three years, thousands of gay men had cooperated with the CDC research that gave the world both the first definitive hepatitis B epidemiology and, finally, a vaccine against the disease, a major killer of children in Africa and Southeast Asia. Tens of thousands of blood samples from these gay men remained frozen in the refrigerators of the CDC for use in future studies. The new vaccine could save millions of lives worldwide, and it was coming into production courtesy of the gay community. Moreover, Ostrow thought, CDC plans for widespread vaccination of gay men would start the long process of eliminating the disease from the gay population.

Things were looking up, Ostrow told the conference in his presentation on gay sexually transmitted diseases. This story had a happy ending. Personally, Ostrow hoped that he’d be able to get out of the STD business altogether, now that the biggest of gay venereal diseases had been effectively beaten.

That was when Dr. Jim Curran stood up. Ostrow recognized Curran from years of work on both the hepatitis study and gay VD issues. Curran started talking about the five cases of
Pneumocystis carinii
pneumonia in Los Angeles. The CDC would be publishing an
MMWR
on
Pneumocystis
next week, he said, and they’d soon be setting up a task force.

Later that night, Ostrow, Curran, CDC veteran Harold Jaffe, and a few gay doctors caucused in Dave Ostrow’s hotel room at the Harbor Holiday Inn. A light spring breeze blew over sailboats rocking gently in the marina outside the window. Ostrow mused on the years he had spent getting Curran and Dr. Jaffe acculturated to the gritty details of gay sexual habits, from rimming to fisting. Curran had seemed uptight at the start, Ostrow thought, but he buckled down to his work. Both Jaffe and Curran were unusual in that federal officials rarely had any kind of contact with gays, and the few who did rarely wanted to learn the detailed gymnastics of gay sex.

Maybe the pneumonia was the effect of some bad batch of drugs, Ostrow hoped aloud. Something easily taken care of. Curran agreed that there might be some environmental factor that could explain the outbreak. Maybe some bad nitrate inhalants. That was one of the two major hypotheses. There was another hypothesis, far more frightening: “It could be an infectious disease.”

On Friday June 5, 1981, the Centers for Disease Control
Morbidity and Mortality Weekly Report
published what would be the first report on the epidemic, based on the Los Angeles cases of
Pneumocystis
that Drs. Michael Gottlieb and Joel Weisman had seen in the previous months. In the week before publication, skittish CDC staffers debated how to handle the gay aspect of the report. Some of the workers in the venereal disease division had long experience working with the gay community and worried about offending the sensitivities of a group with whom they would clearly be working closely in the coming months. Just as significantly, they also knew that gays were not the most beloved minority in or out of the medical world, and they feared that tagging the outbreak too prominently as a gay epidemic might fuel prejudice. As it was, the fact that the hepatitis vaccine project had been largely a homosexual effort was downplayed for both Congress and the administration for fear that it would squash the program.

The report, therefore, appeared not on page one of the
MMWR
but in a more inconspicuous slot on page two. Any reference to homosexuality was dropped from the tide, and the headline simply read:
Pneumocystis
pneumonia—Los Angeles.

Don’t offend the gays and don’t inflame the homophobes. These were the twin horns on which the handling of this epidemic would be torn from the first day of the epidemic. Inspired by the best intentions, such arguments paved the road toward the destination good intentions inevitably lead.

June 9, 1981

M
EMORIAL
S
LOAN
-K
ETTERING
C
ANCER
C
ENTER,
N
EW
Y
ORK
C
ITY

“What’s going to happen to me?”

Dr. Jim Curran stared at the patient who was such a reflection of himself. Like Curran, the man was thirty-six years old and the product of an Ivy League education. He was even raised near Detroit, Curran’s hometown. And he was a successful professional, having carved out a career in New York as an entertainer. The man wasn’t like Curran at all in that he was homosexual and had lived in Greenwich Village for the past fifteen years.

Married and the father of two, Curran’s decade in the Centers for Disease Control had forced him to shift from city to city before landing in Atlanta, where he headed up the CDC’s venereal disease prevention services. That was why it was only yesterday he had attended the first meeting of an ad hoc task force hurriedly put together to investigate the outbreaks of
Pneumocystis
and Kaposi’s sarcoma. He’d taken a morning flight to New York City to talk to Alvin Friedman-Kien and see some of these patients for himself. The performer was the first victim of this unlikely new battery of diseases Curran had ever met.

Though he knew he was supposed to act like the big expert doctor from the CDC, Curran didn’t know what to say when the man asked him what would happen. Like most doctors, he was loathe to admit he didn’t have all the answers. Today, however, he didn’t have much choice. This epidemic was only three days old.

“I have no idea what will happen,” said Curran.

He felt embarrassed to be examining the man, stripped down to his underwear, as if he were a lab animal. The lesions, however, got him back to business. Whatever this was, Curran thought, it wasn’t the benign African KS in all the textbooks. This disease was far more aggressive.

Curran was also struck by how identifiably gay all the patients seemed to be. After years of working with the gay community, he knew that you couldn’t tell homosexuals by looking at them. These clearly must be patients who put a high personal stake in their identification as gay people, living in the thick of the urban gay subculture. They hadn’t just peeked out of the closet yesterday.

It was strange because diseases tended not to strike people on the basis of social groups. Epidemics could be restricted geographically, like the Legionnaire’s epidemic of 1976, hitting a group of conventioneers at a particular hotel in Philadelphia. Diseases might appear in a group bound together by physiological similarities, such as women who had physical reactions to Rely tampons and suffered from toxic shock syndrome. To Curran’s recollection, however, no epidemic had chosen victims on the basis of how they identified themselves in social terms, much less on the basis of sexual life-style. Yet, this identification and a propensity for venereal diseases were the only things the patients from three cities—New York, Los Angeles, and San Francisco—appeared to share. There had to be something within this milieu that was hazardous to these people’s health.

Curran returned to Atlanta, where the Kaposi’s Sarcoma and Opportunistic Infections (KSOI) Task Force was chasing down leads with a vigor that had earned the CDC its reputation as the world’s foremost medical detective agency. With all the overlapping infections, the mysterious immune defects, and the unprecedented sociological issues, nothing about this epidemic fit into any neat category. About a dozen staffers from all the disciplines potentially involved with the diseases volunteered for the working group. They included specialists in immunology, venereology, virology, cancer epidemiology, toxicology, and sociology. Because the outbreak might be linked to the Gay Bowel Syndrome, parasitologists were called in. With Curran, Harold Jaffe, and Mary Guinan, the task force was weighted with people from venereal disease studies. Curran was designated the KSOI Task Force chair, in large part, he figured, because he was the only member important enough to have his own secretary, who could type minutes.

As the task force met daily to share notes, the two potential causes of the epidemic emerged with greater clarity. First, there could be some substance common to the environment of these patients causing their immune problems. The leading candidate was poppers, or nitrite inhalants, though almost any bad batch of drugs might be to blame. The second explanation, of course, was that this was the effect of some infectious agent, either one new virus or some combination of old microbes working together in a new way. Though the two hypotheses gave latitude for a nearly infinite range of answers, most of the CDC staffers had no doubt that a smoking gun would emerge. They had tackled epidemics before, and they would again. It would take old-fashioned, shoe-leather epidemiology, and the symbol of the CDC was an old shoe with a hole worn through the sole.

When they weren’t fielding the onslaught of phone calls coming in from around the country in response to the
MMWR
report, the CDC doctors were calling contacts. Since the first
MMWR
article only discussed pneumonia, the most common comment was, “I’m seeing the
Pneumocystis,
but I’m also seeing Kaposi’s sarcoma in gay men too.” Whatever was happening to the PCP cases in Los Angeles was somehow related to these KS patients in New York.

Mary Guinan went down the street to the medical library at Emory University and checked out an immunology text so she could get a handle on Michael Gottlieb’s finding that the pneumonia victims were strangely deficient in T-helper lymphocytes. The book didn’t have anything about any kind of T-cells; their discovery was too recent. Guinan called her friend Donna Mildvan at Beth Israel Medical Center in New York. Mildvan told her about the immune problems in gay men she’d been seeing since last July. These people get horrible infections, Mildvan said, and then they wither up and die.

On a hunch, Guinan called a drug company that manufactured medicine for severe herpes infections. They told her about a New York City doctor who had been seeing still more dreadful herpes infections in gay men. This doctor told Guinan that he thought the ravaging infections were related to PCP. He hadn’t told anybody about the cases, however, because he had written a paper that was under submission at a medical journal.

Guinan was shaken by her investigation. She was accustomed to dealing with venereal diseases, ailments for which you receive an injection and are cured: This was different. She couldn’t get the idea out of her head: There’s something out there that’s killing people. That was when Mary Guinan hoped against hope that they would find something environmental to link these cases together. God help us, she thought, if there’s a new contagion spreading such death.

After the publication of the
MMWR
report on
Pneumocystis,
the news services carried a dozen or so paragraphs on the pneumonia outbreak. Most gay papers across the country carried the item well off the front pages since it seemed, at best, to be some medical oddity that was probably blown out of proportion by homophobes in both the scientific establishment and the media. It was in the gay press, however, that the complicated phraseology of
Pneumocystis carinii
pneumonia was first simplified to a term that fit better into headlines. Gay pneumonia, it was called.

June 12

C
LAUDE
-B
ERNARD
H
OSPITAL
,
P
ARIS

The gay man arrived at Dr. Willy Rozenbaum’s examining room, complaining of a severe weight loss and a shortness of breath. Again, Rozenbaum made the diagnosis of
Pneumocystis,
as baffled about the cause as he had been for the Portuguese cab driver, the Zairian airline employee, and the French woman who had spent time in Central Africa. That afternoon’s mail brought from the United States the
MMWR
describing the pneumonia outbreak in Los Angeles. This was related to the man he had seen this morning, Rozenbaum knew, and there was only one explanation. It couldn’t be anything in the environment; Los Angeles was virtually on the other side of the world. It had to be a new infectious agent.

June 16

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

Although he was only thirty-eight, Dr. Don Francis was one of the most eminent experts on epidemics at the CDC, having been among the handful of epidemiologists who literally wiped smallpox off the face of the earth in the 1970s. In recent years he had worked with the gay community on the hepatitis vaccine project, which he was now wrapping up.

Don called his old Harvard mentor, Myron Essex, as soon as he heard about how PCP and Kaposi’s sarcoma victims suffered from a strange depletion in T-lymphocytes. It was with Essex that Francis had studied the mechanisms of feline leukemia virus for his virology doctorate.

“This is feline leukemia in people,” Francis began.

Essex knew Francis had a penchant for quick conclusions stated in the most dramatic terms; he also knew that his former student had gained an international reputation for singular brilliance. After spending eight years studying feline leukemia, the major cause of cat deaths, Essex was more than casually interested in links between this disease and human disease. He and Francis were among the small minority of scientists who believed that viruses would one day be linked to cancer and other serious human ailments. Together, they had published eight articles on feline leukemia as well as a controversial piece suggesting that some human lymphomas, leukemias, and cancers of the immune system might be linked to viral infections. Essex settled back to listen to Francis’s logic.

Cancer and immune suppression, Francis said. Both feline leukemia and this new gay disease were marked by a trail of opportunistic infections that seemed to take advantage of an immune system weakened by a primary infection. In cats, the infection was a leukemia virus that knocked out the cats’ immune systems and left them open to a number of cancers. Clearly, some similar virus was doing the same thing to these homosexual men, and they were getting cancer too. Secondly, feline leukemia has a long incubation period; this new disease must have long latency too, which is the only way it was killing people in three cities on both coasts before anybody even knew it existed.

His years of battling epidemics in Africa, Asia, and America had imbued Francis with the idea that viruses were crafty little creatures constantly trying to outsmart humans in their bid for survival. Long latency periods were one of the most clever ways to thwart detection and extermination. Francis didn’t think the gay health problems were being caused by cytomegalovirus or the other familiar viruses under discussion. They had been around for years and hadn’t killed anybody. It was something new; it could even be a retrovirus, Francis said.

Essex was intrigued, although he knew most scientists would consider Francis’s suggestion farfetched. As a subgroup of viruses, retroviruses were, at best, a quaint and exotic group of viruses. Last year, a National Cancer Institute researcher, Dr. Robert Gallo, had shown that a retrovirus caused a leukemia common in Japan, the first time any virus had been linked to a human cancer. That was something of a backward scientific affair, however. Gallo had first discovered the virus and then searched worldwide for a disease that it might cause. By chance, Japanese researchers were studying the T-cell leukemia, assuming it was a contagious cancer, but they hadn’t identified a viral culprit. Identifying Human T-cell Leukemia virus, or HTLV, as the cause, had forged a major scientific breakthrough in virology; it also had frightened scientists because of its long incubation period. Such a virus could be spread all over before it caused disease and anybody would even know it existed.

Many scientists remained dubious about the future of retroviral research, however, and many still believed retroviruses to be animal bugs because virtually all of them were linked to diseases in chickens, pigs, or cats. Essex figured that this was wishful thinking. Francis’s idea, Essex thought, was a hypothesis that bore watching.