And the Band Played On

Politics, People, and the AIDS Epidemic 20th Anniversary Edition

St. Martin's Press

Contents

THE FEAST OF THE HEARTS

July 4, 1976
New York Harbor

Tall sails scraped the deep purple night as rockets burst, flared, and flourished red, white, and blue over the stoic Statue of Liberty. The whole world was watching, it seemed; the whole world was there. Ships from fifty-five nations had poured sailors into Manhattan to join the throngs, counted in the millions, who watched the greatest pyrotechnic extravaganza ever mounted, all for America's 200th birthday party. Deep into the morning, bars all over the city were crammed with sailors. New York City had hosted the greatest party ever known, everybody agreed later. The guests had come from all over the world.

This was the part the epidemiologists would later note, when they stayed up late at night and the conversation drifted toward where it had started and when. They would remember that glorious night in New York Harbor, all those sailors, and recall: From all over the world they came to New York.

Christmas Eve, 1976
Kinshasa, Zaire

The hot African sky turned black and sultry; it wasn't like Christmas at all.

The unrelenting mugginess of the equatorial capital made Dr. Ib Bygbjerg even lonelier for Denmark. In the kitchen, Dr. Grethe Rask, determined to assuage her young colleague's homesickness, began preparing an approximation of the dinner with which Danes traditionally begin their Christmas observance, the celebration known through centuries of custom as the Feast of the Hearts.

The preparations brought back memories of the woman's childhood in Thisted, the ancient Jutland port nestled on the Lim Fiord not far from the North Sea. As the main course, Grethe Rask knew, there needed to be something that flies. In Jutland that would mean goose or duck; in Zaire, chicken would have to suffice. As she began preparing the fowl, Grethe again felt the familiar fatigue wash over her. She had spent the last two years haunted by weariness, and by now, she knew she couldn't fight it.

Grethe collapsed on her bed. She had been among the Danish doctors who came to replace the Belgian physicians who were no longer welcome in this new nation eager to forget its recent colonial incarnation as the Belgian Congo. Grethe had first gone there in 1964, returning to Europe for training in stomach surgery and tropical diseases. She had spent the last four years in Zaire but, despite all this time in Africa, she remained unmistakably from the Danish stock who proudly announce themselves as north of the fjord. To be north of the Lim Fiord was to be direct and decisive, independent and plainspoken. The Jutlanders born south of the stretch of water that divides the Danish peninsula tend toward weakness, as anyone north of the fjord might explain. Far from the kings in Copenhagen, these hardy northern people had nurtured their collective heritage for centuries. Grethe Rask from Thisted mirrored this.

It explained why she was here in Zaire, 5,000 miles from where she might forge a lucrative career as a surgeon in the sprawling modern hospitals of Copenhagen. Such a cosmopolitan career meant people looking over her shoulder, giving orders. Grethe preferred the work she had done at a primitive hospital in the remote village of Abumombazi in the north of Zaire. She alone was in charge there.

The hospital conditions in Abumombazi were not as deplorable as in other parts of the country. A prominent Zairian general came from the region. He had had the clout to attract a white doctor to the village, and there, with Belgian nuns, Grethe worked with what she could beg and borrow. This was Central Africa, after all, and even a favored clinic would never have such basics as sterile rubber gloves or disposable needles. You just used needles again and again until they wore out; once gloves had worn through, you risked dipping your hands in your patient's blood because that was what needed to be done. The lack of rudimentary supplies meant that a surgeon's work had risks that doctors in the developed world could not imagine, particularly because the undeveloped pan, specifically Central Africa, seemed to sire new diseases with nightmarish regularity. Earlier that year, not far from Abumombazi, in a village along the Ebola River on the Zaire-Sudan border, a virulent outbreak of a horrifying new disease had demonstrated the dangers of primitive medicine and new viruses. A trader from the village of Enzara, suffering from fevers and profuse, uncontrollable bleeding, had come to the teaching hospital for nurses in Maridi. The man apparently had picked up the disease sexually. Within days, however, 40 percent of the student nurses in Maridi were stricken with the fever, transmitted by contact with the patient's infected blood either through standard care procedures or through accidental needle-sticks.

Frightened African health officials swallowed their pride and called the World Health Organization, who came with a staff from the American Centers for Disease Control. By the time the young American doctors arrived, thirty-nine nurses and two doctors were dead. The CDC doctors worked quickly, isolating all patients with fevers. Natives were infuriated when the Americans banned the traditional burials of the victims since the ritual bathing of the bodies was clearly spreading the disease further. Within weeks, however, the epidemic was under control. In the end, the Ebola Fever virus, as it came to be known, killed 53 percent of the people it infected, seizing 153 lives before it disappeared as suddenly and mysteriously as it had arisen. Sex and blood were two horribly efficient ways to spread a new virus, and years later, a tenuous relief would fill the voices of doctors who talked of how fortunate it was for humankind that this new killer had awakened in this most remote corner of the world and had been stamped out so quickly. A site just a bit closer to regional crossroads could have unleashed a horrible plague. With modern roads and jet travel, no corner of the earth was very remote anymore; never again could diseases linger undetected for centuries among a distant people without finding some route to fan out across the planet.

The battle between humans and disease was nowhere more bitterly fought than here in the fetid equatorial climate, where heat and humidity fuel the generation of new life forms. One historian has suggested that humans, who first evolved in Africa eons ago, migrated north to Asia and Europe simply to get to climates that were less hospitable to the deadly microbes the tropics so efficiently bred.

Here, on the frontiers of the world's harshest medical realities, Grethe Rask tended the sick. In her three years in Abumombazi, she had bullied and cajoled people for the resources to build her jungle hospital, and she was loved to the point of idolization by the local people. Then, she returned to the Danish Red Cross Hospital, the largest medical institution in the bustling city of Kinshasa, where she assumed the duties of chief surgeon. Here she met Ib Bygbjerg, who had returned from another rural outpost in the south. Bygbjerg's thick dark hair and small compact frame belied his Danish ancestry, the legacy, he figured, of some Spanish sailor who made his way to Denmark centuries ago. Grethe Rask had the features one would expect of a woman from Thisted, high cheekbones and blond hair worn short in a cut that some delicately called mannish.

To Bygbjerg's eye, on that Christmas Eve, there were troubling things to note about Grethe's appearance. She was thin, losing weight from a mysterious diarrhea. She had been suffering from the vague yet persistent malaise for two years now, since her time in the impoverished northern villages. In 1975, the problem had receded briefly after drug treatments, but for the past year, nothing had seemed to help. The surgeon's weight dropped further, draining and weakening her with each passing day.

Even more alarming was the disarray in the forty-six-year-old woman's lymphatic system, the glands that play the central role in the body's never-ending fight to make itself immune from disease. All of Grethe's lymph glands were swollen and had been for nearly two years. Normally, a lymph node might swell here or there to fight this or that infection, revealing a small lump on the neck, under an arm, or perhaps, in the groin. There didn't seem to be any reason for her glands to swell; there was no precise infection anywhere, much less anything that would cause such a universal enlargement of the lymph nodes all over her body.

And the fatigue. It was the most disconcerting aspect of the surgeon's malaise. Of course, in the best of times, this no-nonsense woman from north of the fjord did not grasp the concept of relaxation. Just that day, for example, she had not been scheduled to work, but she put in a full shift, anyway; she was always working, and in this part of the world nobody could argue because there was always so much to be done. But the weariness, Bygbjerg could tell, was not bred by overwork. Grethe had always been remarkably healthy, throughout her arduous career. No, the fatigue was something darker; it had become a constant companion that weighted her every move, mocking the doctor's industry like the ubiquitous cackling of the hyena on the savannah.

Though she was neither sentimental nor particularly Christian, Grethe Rask had wanted to cheer her young colleague; instead, she lay motionless, paralyzed again. Two hours later, Grethe stirred and began, halfheartedly, to finish dinner. Bygbjerg was surprised that she was so sick then that she could not muster the strength to stay awake for something as special as the Feast of the Hearts.

November 1977
Hjardemaal, Denmark

A cold Arctic wind blistered over the barren heath outside a whitewashed cottage that sat alone, two miles from the nearest neighbors in the desolate region of Denmark north of the Lim Fiord. Sweeping west, from the North Sea over the sand dunes and low, bowed pines, the gusts made a whoosh-whooshing sound. Inside the little house, under a neat red-tiled roof, Grethe Rask gasped her short, sparse breaths from an oxygen bottle.

"I'd better go home to die," Grethe had told Ib Bygbjerg matter-of-factly.

The only thing her doctors could agree on was the woman's terminal prognosis. All else was mystery. Also newly returned from Africa, Bygbjerg pondered the compounding mysteries of Grethe's health. None of it made sense. In early 1977, it appeared that she might be getting better; at least the swelling in her lymph nodes had gone down, even as she became more fatigued. But she had continued working, finally taking a brief vacation in South Africa in early July.

Suddenly, she could not breathe. Terrified, Grethe flew to Copenhagen, sustained on the flight by bottled oxygen. For months now, the top medical specialists of Denmark had tested and studied the surgeon. None, however, could fathom why the woman should, for no apparent reason, be dying. There was also the curious array of health problems that suddenly appeared. Her mouth became covered with yeast infections. Staph infections spread in her blood. Serum tests showed that something had gone awry in her immune system; her body lacked T-cells, the quarterbacks in the body's defensive line against disease. But biopsies showed she was not suffering from a lymph cancer that might explain not only the T-cell deficiency but her body's apparent inability to stave off infection. The doctors could only gravely tell her that she was suffering from progressive lung disease of unknown cause. And, yes, in answer to her blunt questions, she would die.

Finally, tired of the poking and endless testing by the Copenhagen doctors, Grethe Rask retreated to her cottage near Thisted. A local doctor fitted out her bedroom with oxygen bottles. Grethe's longtime female companion, who was a nurse in a nearby hospital, tended her. Grethe lay in the lonely whitewashed farmhouse and remembered her years in Africa while the North Sea winds piled the first winter snows across Jutland.

In Copenhagen, Ib Bygbjerg, now at the State University Hospital, fretted continually about his friend. Certainly, there must be an answer to the mysteries of her medical charts. Maybe if they ran more tests. ... It could be some common tropical culprit they had overlooked, he argued. She would be cured, and they would all chuckle over how easily the problem had been solved when they sipped wine and ate goose on the Feast of the Hearts. Bygbjerg pleaded with the doctors, and the doctors pleaded with Grethe Rask, and reluctantly the wan surgeon returned to the old Rigshospitalet in Copenhagen for one last chance.

Bygbjerg would never forgive himself for taking her away from the cottage north of the fjord. The virulent microbes that were haunting her body would not reveal themselves in the bombardment of tests she endured in those last days. On December 12, 1977, just twelve days before the Feast of the Hearts, Margrethe P. Rask died. She was forty-seven years old.

Later, Bygbjerg decided he would devote his life to studying tropical medicine. Before he died, he wanted to know what microscopic marauder had come from the African jungles to so ruthlessly rob the life of his best friend, a woman who had been so intensely devoted to helping others.

An autopsy revealed that Grethe Rask's lungs were filled with millions of organisms known as Pneumocystis carinii; they had caused a rare pneumonia that had slowly suffocated the woman. The diagnosis raised more questions than answers: Nobody died of Pneumocystis. Intrigued, Bygbjerg wanted to start doing research on the disease, but he was dissuaded by wizened professors, who steered him toward work in malaria. Don't study Pneumocystis, they told him; it was so rare that there would be no future in it.

GLORY DAYS

June 29, 1980
San Francisco

The sun melted the morning fog to reveal a vista so clear, so crystalline that you worried it might break if you stared too hard. The Transamerica Pyramid towered over the downtown skyline, and the bridges loped toward hills turning soft gold in the early summer heat. Rainbow flags fluttered in the gentle breezes.

Seven men were beginning their day. Bill Kraus, fresh from his latest political triumph in Washington, D.C., was impatient to get to the foot of Market Street to take his place at the head of the largest parade in San Francisco. There was much to celebrate.

In his apartment off Castro Street, in the heart of San Francisco's gay ghetto, Cleve Jones waited anxiously for his lover to get out of bed. This was parade day, Cleve kept repeating. No man, even the delightful muffin lolling lazily in the bed next to him, would make him late for this day of days. Cleve loved the sight of homosexuals, thousands strong. It was he who had led the gay mob that rioted at City Hall just a year ago, although he had now refashioned himself into the utterly respectable aide to one of California's most powerful politicians. He wasn't selling out, Cleve told friends impishly; he was just adding a new chapter to his legend. "Meet me at the parade," he called to his sleepy partner as he finally dashed for the door. "I can't be late."

A few blocks away, Dan William waited to meet David Ostrow. The two doctors were in town for a gathering of gay physicians at San Francisco State University. At home in New York City, gay parades drew only 30,000 or so; Dan William tried to imagine what a parade with hundreds of thousands of gays would look like. From what he had heard, David Ostrow was glad they didn't have parades like San Francisco's in Chicago; it would never play.

On California Street, airline steward Gaetan Dugas examined his face closely in the mirror. The scar, below his ear, was only slightly visible. His face would soon be unblemished again. He had come all the way from Toronto to enjoy this day, and for the moment he would put aside the troubling news the doctors had delivered just a few weeks before.

In the Mission District, the Gay Freedom Day Parade was the event twenty-two-year-old Kico Govantes had anticipated the entire five weeks he'd been in San Francisco. The tentative steps Kico had taken in exploring his homosexuality at a small Wisconsin college could now turn to proud strides. Maybe among the thousands who had been streaming into the city all week, Kico would find the lover he sought.

* * *

Before.

It was to be the word that would define the permanent demarcation in the lives of millions of Americans, particularly those citizens of the United States who were gay. There was life after the epidemic. And there were fond recollections of the times before.

Before and after. The epidemic would cleave lives in two, the way a great war or depression presents a commonly understood point of reference around which an entire society defines itself.