And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (10 page)

“My life is falling apart,” Ken Home told Dr. James Groundwater.

Groundwater was a dermatologist, involved in a course of work that did not lend itself to such dramatic confessionals. But the forty-three-year-old physician had the fatherly manner of someone to whom you’d spill your guts, and as Ken anxiously took off his shirt, the doctor heard his story.

For two years, he’d been feeling tired and always a little sick to his stomach. There was also this diarrhea, off and on, since 1978. It was horrible. And then, last month, Ken said, came these funny bumps.

Groundwater examined the bluish-purple spots. One was on Ken’s left thigh, the other was near his right nipple.

“What’s happening to me?” Ken pleaded.

He was angry that years of visiting doctors had not made him one bit better, or even told him what was wrong.

Groundwater was surprised at the size of Ken’s lymph nodes. They certainly had something to do with those spots.

Ken continued his story as the doctor examined him: His bosses had been making unrealistic demands, so he went on disability this month. He had also started seeing a shrink; he’d do anything to get his life back together.

Groundwater pondered what could be wrong with the thirty-seven-year-old patient. It could be lymphoma, which would explain the swollen nodes but not the spots. Groundwater drew some blood and cut off a sliver of the lesion for a biopsy. They’d figure this out.

Thanksgiving Day, November 27

O
RANGE
C
OUNTY
, C
ALIFORNIA

Canadian winters were so tedious that Gaetan Dugas was overjoyed at the invitation to spend Thanksgiving weekend in southern California. The new object of Gaetan’s affections, a hairdresser, was equally thrilled at the catch. Normally, the hairdresser was content to cruise the Boom-Boom Room in Laguna Beach. His trip to the 8709 Club in West Hollywood had been only his second or third time at a bathhouse, and he’d hooked this gorgeous airline steward who was coming back for seconds, maybe even thirds. What a wonderful weekend they’d have. The baths weren’t so bad after all, he thought.

Gaetan briefly examined himself in the mirror. Yes, a few more spots had had the temerity to appear on his face. The doctors said there was no treatment, but that didn’t matter. He felt fine, and pushing back his sandy hair just so, he smiled at the thought: “I’m still the prettiest one.”

December 5

S
AN
F
RANCISCO

Desperation haunted Ken Home’s sunken eyes as he slowly pulled off his shirt to show Dr. Groundwater the two new purple spots on his chest. No, not another biopsy, he told the doctor fiercely. He wanted some answers.

The blood test assay that had come in from the lab was also disconcerting. Something was wrong with Ken’s white blood cells. Even more startling was the lack of reaction to a series of routine skin tests Groundwater had given the BART station manager during his last exam. The tests, little pricks with needles infected with benign germs, normally swell up to hard red bumps. This means the immune system is manufacturing the antibodies to fight the germs. No bumps on Ken. The immune system had just ignored the needle pricks.

Ken repeated his complaints of nausea, fatigue, and diarrhea, leaving the dermatologist mystified. The man sounded sick, very sick, but from a lab point of view, there wasn’t really
that
much wrong with him. Blood tests are off all the time, and sometimes the skin tests don’t take—but such immune fluctuations don’t leave you so incapacitated. All Groundwater could do was order more tests. He persuaded Ken to let him do a biopsy of a lymph node, which would show whether there was some kind of lymph cancer. The doctor also drew extra blood and sent it to the lab with special instructions to scan the serum for every exotic viral disease they could imagine.

There is an answer to this, Groundwater thought. There always is.

December 9

L
OS
A
NGELES

“What are we doing to ourselves?”

It was the question that Dr. Joel Weisman felt compelled to ask himself as he checked out the nervous, thirty-year-old advertising manager. The guy was sick. He had a painful eczema, persistent diarrhea, and endless fevers. Even worse, he’d been sick for six weeks now and was seeing Dr. Weisman on a referral from his normal internist. After ordering up tests, Weisman wrote his tentative diagnosis on the patient’s chart: “Patient has problems that appear to be secondary to immune deficiency.”

Mysteriously ill people aren’t all that rare in a medical practice, Weisman knew, but this was not isolated. In October, another young gay man had gone to Weisman’s associate with a strikingly similar disarray in his immune system. The constellation of diseases was startling. White fungi grew around the man’s fingernails, fluffy candidiasis was sprouting all over his palate, and he too was suffering from rashes, prolonged fevers, swollen lymph glands, and low white blood counts. Hospitalization brought a brief respite from the skin problems, but by early December, the patient’s nightsweats were soaking through the sheets of his bed and the rashes had returned. Weisman’s partner first thought the man’s blood had been bombarded with both bacterial and viral infections, but by December he also diagnosed “immune deficiency.”

On top of these two cases, another twenty men had appeared at Weisman’s office that year with strange abnormalities of their lymph nodes. That’s how the ailments of these two more seriously ill patients had started. Weisman had half-expected something more serious when he started seeing the lymphadenopathy, or abnormal enlargement of the lymph glands. New studies were showing that 93 percent of gay men were infected with cytomegalovirus, a herpes virus that had been linked to cancer. The gay sexual revolution had also made the Epstein-Barr virus, a microbe also linked to cancers, pandemic among homosexual men. There were only so many viruses a body could battle before something went horribly awry. Now Weisman worried that he was seeing what could happen in the frightened eyes of the advertising manager who had been far too young and healthy last year to be so sick today.

The dean of southern California gay doctors, Weisman had pondered how to start telling gay men to slow down, that all this sex might end up being hazardous to their health. This was not a community that took kindly to stern reprimands, especially about sex, the doctor knew. These men had often been bruised by the painful proddings of parents and priests. This was not a time or place to be judgmental, because most of these men had fled their homes for cities like Los Angeles precisely to escape judgment. Yet the strange mix of taboos and newfound freedom had created a social climate that was wonderfully tailored for aggressive little viruses. So, as Weisman reassured this young man that they’d give him back his health, he was wondering to himself, “What are we doing to ourselves?”

It was the end of 1980, a year when the top movies were
Coal Miner’s Daughter
and the second Star Wars fantasy,
The Empire Strikes Back.
The top musical album was
The River
by Bruce Springsteen, filled with sad songs of economic dislocation and moral confusion about where a once-secure America was going. Meanwhile, a new virus was now well-entrenched on three continents, having moved easily from Africa to Europe and then to North America. Later surveys would show that in the United States fifty-five young men had been diagnosed with some infection linked to the new virus by the end of 1980. Ten others had been diagnosed in Europe, while many more were ailing among the uncounted sick of primitive Africa. Slowly and almost imperceptibly, the killer was awakening.

December 23

N
EW
Y
ORK
C
ITY

Rick Wellikoffs rapid deterioration stunned his doctors no less than his friends. Kaposi’s sarcoma wasn’t supposed to act this way, Dr. Linda Laubenstein knew, but nonetheless Rick was dying. The doctors put it to him bluntly: His lungs were filling up with something. They didn’t know what. They could keep draining the fluid through the tube they had inserted in his chest, and they could, of course, keep him alive on the machines. That, however, would be all they were doing—keeping him alive.

Rick mustered his courage and said, no, he didn’t need the machines. He wanted to go home to his brownstone on the Upper West Side. He checked out of the New York University Hospital two days before Christmas. Paul Popham wanted to go home with him. It was what a friend should do. But that night John and Wes, two of the men with whom they shared the house on Ocean Walk, were throwing their holiday party. Go to the party, Rick insisted.

As the night wore on, Rick’s lover sat at Rick’s bedside and listened to his breaths grow shorter and shorter until, deep in the night, he stopped breathing altogether. In those first hours of the day that Danes observe as the Feast of the Hearts, the thirty-seven-year-old fifth-grade teacher passed away in a flat on West 78th Street, becoming the fourth American to die of what would later be called Acquired Immune Deficiency Syndrome.

B
ETH
I
SRAEL
M
EDICAL
C
ENTER
,
N
EW
Y
ORK
C
ITY

With a sense of weariness, Dr. Donna Mildvan studied the autopsy report of a thirty-three-year-old German chef to whom she had devoted so much of the past five months. His death had been particularly grisly. Plagued by the cytomegalovirus that had spread its virulent herpes throughout his body, the young man had simply curled into a ball and finally died one day, as the late December cold descended on Manhattan. Mildvan grimaced as she surveyed the last CAT scan of the man’s brain. It was shrunken and atrophied, like the brain of a senile old man. She wondered whether she would ever understand what she had missed, what had so cruelly torn away this man’s life.

Two weeks later, a Beth Israel nurse appeared in the emergency room, suffering from
Pneumocystis.
Within ten days, he was dead. It turned out that he was also homosexual. When the pathologist told Mildvan that an autopsy had revealed widespread infection with cytomegalovirus, the physician’s thinking crystallized quickly: There were too many coincidences. Two men had died of infections that should be mere nuisances, not brutal killers. Their immune systems had collapsed. This also explained why she had ten other patients, all gay men, who were suffering from a strange enlargement of their lymph nodes. Something was wrong with their immune systems too.

Mildvan quickly arranged a meeting with the city’s best-known gay physician, Dan William.

“I’m very concerned too,” said William. “I have lots of patients with lymphadenopathy.”

Mildvan went quickly to the point. This was all connected, she was convinced, and in the early weeks of 1981 she became one of the first doctors to begin conceiving a larger picture.

“Whatever that lymphadenopathy is, I think it’s the same thing that just killed those two other guys,” Mildvan said. “There is a new disease going around in homosexual men.”

January 15, 1981

S
T
. L
UKE’S
-R
OOSEVELT
H
OSPITAL,
N
EW
Y
ORK
C
ITY

Enno Poersch watched the white foam bubble out of Nick’s mouth. Foam oozed from his ears and nostrils. For a few days after his mid-November diagnosis, it had looked like the young bartender was improving. The swelling in his brain receded. Nick and Enno even joked occasionally. But Nick never regained his strength after the diagnostic surgery. He had a heart attack, was revived, and was put into the intensive care unit with a tube down his throat and into his lungs to make sure he’d breathe.

He slept most of the time, though sometimes his eyes would open and he’d look at Enno, tall and strong and utterly helpless. Enno was convinced Nick was trying to communicate, but then his eyes would close again. When they pulled out the tube and simply cut a hole in his throat to ease the labored breaths, Nick couldn’t talk, even if he had had the energy. He had two more heart attacks, but the nurses and the machines had kept him from death. The doctors said a herpes virus, cytomegalovirus, was running wild in his body, inundating every organ, and he had some lung infection too. Nobody could say exactly what it was.

Enno and Nick’s sister were keeping vigil over his bed on the brisk Thursday morning of January 15 when one of the nurses commented, “It’s like he’s trying to hold on for somebody.” And Nick’s sister turned to Enno and said the inevitable: “Why don’t we turn it off?”

As the machines were disconnected, Enno looked down at the young man he had met on a Fire Island beach so long ago. He had been so handsome and vibrant. Enno was still staring down at the bed when the machines stopped bleeping and Nick’s chest heaved one last time, and he was dead.

Enno made the trip to Nick’s Pennsylvania hometown for the big Italian funeral. After the long trip back, he walked listlessly into his 80th Street apartment. He had never felt so alone. The phone rang and an anonymous caller started talking dirty. Enno couldn’t believe what he was hearing.

“My lover just died, you asshole, and I just now got back from the funeral,” he shouted.

“Oh God,” said the voice in tones of genuine contrition. “I’m sorry.”

February 1

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

In her tiny office in the cluster of red brick buildings that serve as nerve center for the federal government’s monitoring of the public health, technician Sandra Ford did a second take on the pentamidine request form. Pentamidine was one of the dozen drugs that were used so rarely that the federal government stockpiled the nation’s supply through a special arrangement with the Food and Drug Administration. Not only were the drugs not yet officially licensed for widespread use, but not enough profit existed in their production to interest commercial firms. When doctors needed them, they called Sandy Ford.

The thirty-year-old Ford had spent the last two years in the cramped Room 161 of Building 6 at the CDC, processing pentamidine requests and sending out small bottles of the drug in reinforced cardboard boxes covered with RUSH stickers.

She wasn’t going to save the world at this job, she thought, but she was where the action was and she prided herself on her thoroughness. That’s why she looked twice at the pentamidine request from a New York City physician. The form said he needed the drug to treat a case of
Pneumocystis carinii
pneumonia. Nothing unusual about that, because
Pneumocystis
was the disease that pentamidine was most frequently used to cure. Unlike most other requests, however, the doctor didn’t say why the patient had this rare pneumonia. You only got
Pneumocystis
when something had kicked the bottom out of your natural immunities, Ford knew. Her drug requests almost always mentioned some underlying cause of immune suppression. Most typically, childhood leukemia patients being treated with chemotherapy needed the drug. Others were people with lymphomas or patients on drugs used to stop the body from rejecting a transplanted organ. Sandy made a mental note about this unusual request, methodically filed the form away, and filled the order.

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

“Are you for the president or against him?”

Every Republican on Capitol Hill seemed to be echoing the line in the early days of February. The country seemed downright giddy over its new president, who had been able to announce the end of the humiliating Iranian hostage crisis only moments after pledging, in his friendly way, to cut and hack the federal budget to size. Battered by the loss of the Senate and the defeat of an incumbent president, the Democrats collectively seemed as insecure as a teenager who was stood up on the night of the senior prom. In the first months of 1981, they didn’t appear to have the gumption for much fight.

The long-feared Reagan budget was handed to Tim Westmoreland moments after it arrived in his office. This, everyone knew, was to be the opening volley in the new Reagan administration’s war on domestic spending. The book was still warm to the touch from the printing presses as Westmoreland quickly leafed to the sections on health programs. As chief counsel to the House Subcommittee on Health and the Environment, he would be the key congressional staffer to defend the Democratic health agenda. Westmoreland was thankful that his boss, Los Angeles Congressman Henry Waxman, rarely wavered from a thoroughly liberal commitment to federal health spending.

Slapped together quickly in the days after the Reagan inauguration/the book was a hodgepodge of handwritten margin notes. The Carter administration had held a tight line on health spending. Under Reagan, Westmoreland could see, it would be worse. The National Institutes of Health did not fare too poorly under the Reagan proposals, losing only $127 million of Carter’s proposed $3.85 billion. Westmoreland sighed, however, when he saw the Reagan plan for the Centers for Disease Control. The executive Office of Management and Budget, or OMB, wanted to cut the Carter budget’s recommended $327 million in CDC funding to $161 million.

None of this was particularly surprising. President Reagan had gone into office promising that federal programs would be turned over to the states. About half the money cut from the CDC budget would go to the states in block grants so they could administer comparable programs locally. Westmoreland, however, worried that the slashing of the CDC budget courted disaster. The CDC was the frontline in any public health emergency that might befall the country. In the past decade, it had been called upon to tackle Legionnaire’s disease and toxic shock syndrome. These weren’t pork-barrel special interest programs or social engineering schemes by pointy-headed liberals. The CDC usually got involved when people were dying.

N
EW
Y
ORK
U
NIVERSITY

Dr. Linda Laubenstein immediately recognized Paul Popham as a friend of Rick Wellikoff, the schoolteacher who had died last December after contracting the rare skin cancer. Paul was at NYU being treated again for psoriasis. Now there were six cases of that cancer, Kaposi’s sarcoma, she mentioned to Paul. Funny thing, she added, all of them were gay men.

U
NIVERSITY OF
C
ALIFORNIA,
L
OS
A
NGELES

The fungus on the fingers, the diarrhea and herpes, those had been around for a long time, the young man explained carefully to Dr. Michael Gottlieb. The fevers had been running at 104 degrees for three months now, and he had dropped thirty pounds, he said. But the shortness of breath was something new.

Dr. Joel Weisman had sent the patient to UCLA in hopes that they could figure out what was so mercilessly haranguing his body. As Michael Gottlieb began studying test results, he was struck by how similar this man’s symptoms were to those of another young man he had treated late last year. Coincidentally, this second patient was also gay. Gottlieb still was taken aback when the lung biopsy indicated that the thirty-year-old, like last year’s patient, was suffering from
Pneumocystis.
Even more striking was the depletion in his T-cells, just like the other patient.

Michael Gottlieb thought Joel Weisman looked anxious as they sat down with two other specialists to talk about the case in Gottlieb’s office at UCLA. Of course, Weisman was anxious: He hadn’t told Gottlieb yet that he had still another patient with precisely the same bizarre constellation of symptoms, right down to the rare pneumonia that suddenly didn’t seem so rare anymore. Two cases was something to be concerned about. Three cases, he felt, were a big deal, a harbinger of more to come.

Weisman offered that the men’s immune systems might have been shattered by some new cytomegalovirus or some combination of CMV and the Epstein-Barr virus, the cancer-linked viruses that most commonly cause mononucleosis. The new patient’s blood certainly showed elevated levels of CMV that were rising and falling daily. Something was going on with that virus, Gottlieb agreed, and he would work it up further, but he still wasn’t sold on the idea that CMV was causing it. The virus had been around for years and was reported to have infected as many as 93 percent of gay men. Something that ubiquitous just doesn’t pick on a handful of people to start brutalizing. It needed careful study, they decided. Weisman soon sent Gottlieb his second
Pneumocystis
patient, the third such case at UCLA. Like Weisman, Gottlieb now knew something important was going on, even if he wasn’t sure what. He started poring over books on CMV, immune problems of transplant patients, and anything else he could find on immune suppression. He began framing a scientific paper on the miniepidemic of pneumonia.

S
T
. L
UKE’S
-R
OOSEVELT
H
OSPITAL
,
N
EW
Y
ORK
C
ITY

Not many Haitians can afford to whisk themselves up to a fancy Manhattan hospital for treatment, Dr. Michael Lange thought, but the house staff confided that the patient was a bodyguard to President-for-Life Jean-Claude Duvalier. The patient, Lange noted, was positively ravaged, suffering from severe candidiasis, and even worse, tuberculosis that had spread throughout his body. The fellow’s immune system appeared to be shot, and there didn’t appear to be any reason for it. In another room, Lange was probing a similar mystery—a drug addict suffering from
Pneumocystis.
Talk was that a hospital in Queens was treating an outbreak of the pneumonia in intravenous drug users.

March 3

U
NIVERSITY OF
C
ALIFORNIA,
S
AN
F
RANCISCO

The doctors lifted the baby boy gently from the mother’s womb. Not only was the birth complicated by the cesarean section, but this was an “Rh baby.” Because of an unusual genetic complication, his body had antibodies to its own blood. Only complete transfusions would save the infant’s life, and within the next week, his entire blood supply was replaced six times.

A week after the baby’s birth, a forty-seven-year-old man came into the Irwin Memorial Blood Bank to donate blood. The donor seemed fine and healthy. Before the day was over, his blood was broken into components. On the next day, one of those components, blood platelets that help blood to clot, were transfused into the ailing baby at the UC Medical Center on Parnassus Hill.

C
ASTRO
S
TREET
, S
AN
F
RANCISCO

Shortly after they met, Kico Govantes told Bill Kraus about his first night at a bathhouse on the day of last year’s Gay Freedom Day Parade. Bill laughed and hugged Kico, and told him he was hopelessly naive. Kico’s wholesomeness had been a source of amazement and attraction for Bill since the day they had met.