Pharma, p.43
Pharma, page 43
Gay men accounted for more than half of all reported cases in 1980 in the U.S. of gonorrhea and syphilis.8 Two thirds of the gay men at San Francisco’s popular general clinic tested positive for hepatitis B, a liver infection spread sexually or through blood. Twenty percent of the sexually active gay men moving to San Francisco contracted hepatitis in their first twelve months. Within four years, the infection rate was virtually 100 percent.9 No one yet realized it was a problem beyond those who got infected with hepatitis; blood bank officials estimated that in 1980 San Francisco gay men donated 5 percent to 7 percent of the city’s blood. There was no test to screen for hepatitis.10
A Seattle study showed that an unusually large number of gay men had contracted shigellosis, a bacterial infection spread through contaminated food, water, or feces. Seventy percent of those infected had found their sex partners at bathhouses. A study in Denver found that gay men had on average three sexual encounters every time they went to a bathhouse. There was a one in three chance they left a bathhouse with gonorrhea or syphilis.11 Chicago’s Howard Brown Memorial Clinic recorded an epidemic infection rate of hepatitis B, about half of its gay patients. At the New York Gay Men’s Health Project, a third had gastrointestinal parasites. In San Francisco, local clinics reported a stunning 8,000 percent increase in intestinal parasites over seven years, mostly young men in their thirties. It was so common by 1980 that medical journals dubbed it “Gay Bowel Syndrome.”12
The doctors who gathered for the 1980 San Francisco conference knew that parasitic diseases like shigellosis, amebiasis, and giardiasis thrived in the feces of infected patients. Unprotected anal intercourse was one way the intestinal bugs spread. The other high-risk, yet popular, sex practice was rimming. The medical journals referred to that as “oral-anal intercourse.”13
As Randy Shilts later wrote in And the Band Played On, his seminal book about AIDS and the deadly failure of the federal government to respond, “the success of the Gay Liberation movement which had started in the late-1960s, had by 1980, however… become a victim of its own success.”14
By that summer, doctors started seeing an uptick in gay patients with multiple immune-related illnesses. In New York, Los Angeles, and San Francisco, clinics noticed young and seemingly fit gay men who were inexplicably ill with tuberculosis and rare atypical interstitial pneumonias (chronic swelling of the lungs’ tiny air sacs).15
Gaëtan Dugas, a twenty-eight-year-old flight attendant for Air Canada, saw a Toronto specialist about purple lesions that had broken out on his back and face. His lymph nodes had been swollen for a year. A biopsy confirmed Kaposi sarcoma. Dugas kept working as an air steward, traveling thousands of miles annually to more than a dozen cities across the U.S., Canada, and Haiti. He later estimated to medical researchers that he had about 2,500 sex partners during the 1970s.I
A month later, a San Francisco resident, Ken Horne, was also diagnosed with Kaposi. Blood tests revealed his white blood cell count was extremely low and something undetermined was suppressing his immune system.
In July, a thirty-three-year-old German chef, who had worked in Haiti for three years, was admitted to the emergency room of Manhattan’s Beth Israel Hospital. “He came to New York after he’d gotten sick in Haiti with weight loss and uncontrollable bloody diarrhea,” recalled Dr. Donna Mildvan, then a thirty-five-year-old infectious disease specialist. A stool test revealed he had amoebic parasites, the type of intestinal bug common to travelers.
“He didn’t get better. That was extraordinary,” she recalled.
The chef kept going in and out of the hospital for the next six months.
“We’d get him a little more stabilized,” Mildvan said, “he’d go home for a while, and then he’d be back.” He kept losing weight, developed sores, and lost sight in one eye.16
Mildvan and her team were detectives hunting for the mystery of what their patient was so sick with. They ran dozens of tests and researched rare illnesses. They debated a wide range of treatments, including a massive dose of antibiotics, but feared if it was an immune disease, the antibiotics would hasten the disintegration.17
By the fall, Mildvan suspected a virus was the culprit. Beth Israel had no virology lab. She and a colleague withdrew fluid from their patient’s eye and rectal lesions and sent those to the lab at Montefiore Medical Center in the Bronx. Their report concluded that sexually transmitted herpes had caused the rectal lesions and herpes-related cytomegalovirus (CMV) was present in the eye fluid. Those viruses were not unusual. What astonished Mildvan was that they almost never caused illnesses as serious as the ones in her patient. Over the coming months, he continued deteriorating. He became blind when the CMV spread to the other eye. A CT scan showed his brain had shrunk like that of an elderly man with dementia.
“He curled up in a ball,” recalled Mildvan, “staring blindly into the distance. He was incontinent. And he died.”
Two weeks later she treated another gay male patient, a nurse with no foreign travel. He had the same CMV infection in an eye, but was deathly ill with Pneumocystis carinii. Mildvan knew that it was a rare pneumonia, only affecting those with compromised immune systems. He died after ten days at the hospital.
Across town, at New York University Medical Center, a leading dermatologist had begun seeing young men in otherwise good health who had the purple Kaposi sarcoma lesions. Dr. Alvin Friedman-Klein had been practicing for twenty-five years and the NYU skin clinic was America’s largest. Still, he had only seen fifteen cases of Kaposi in his career. Now he had two dozen young patients in less than a month, none of them fitting the cancer’s target demographic of older Jewish or Italian men.
“That’s when it clicked,” Mildvan recalls. “It’s a new disease. Something’s going on.”
That same month, Ronald Reagan was inaugurated as the fortieth president of the United States. His successful campaign for the White House was in part based on a pledge to reduce the size and role of government. He delivered on that in January, proposing deep spending cuts. The proposed budget for the Centers for Disease Control was slashed in half.
It was not a good time to cut funding for the only government agency responsible for collating data and planning how to respond to any deadly transmissible new illness. For the next four years the medical community could agree on little, not even on whether the culprit was viral or bacterial. It is not always easy to tell. Infections that cause meningitis, pneumonia, and chronic diarrhea can be caused by either. Chicken pox is a virus. Smallpox was a virus (past tense because it was the first deadly disease to be eradicated by a widespread twentieth-century vaccination program).
If the “new disease” that puzzled Mildvan and other doctors turned out to be from a bacterium, it would mean that some single cell microorganism that had coexisted with humans peacefully for thousands of years had somehow mutated into a virulent pathogen. That is what happened in the fourteenth century when bubonic plague killed 50 million people, 60 percent of Europe’s population. Antibiotics are effective against bacteria because they interfere with their cell walls and either stop them from replicating or force them to self-destruct. The drugs accomplish that without inhibiting or damaging human cells.18 Epidemiologists estimate that if antibiotics had existed during the bubonic plague, the death toll would have been cut by 90 percent.19
Antibiotics are useless, however, against viral invaders. Viruses do not have internal growth mechanisms that antibiotics destroy. They cannot survive alone but instead live inside human cells and hijack the reproductive mechanism of those cells. The 1918 Spanish influenza pandemic killed nearly 100 million people.20 Pharmaceutical companies have discovered and marketed a series of antiviral medications since 1972, but they were effective only if dispensed early during an infection, and even then, only lessened the severity of symptoms and reduced the infection’s duration.
Another weapon, vaccines, tricks the immune system into recognizing a virus and providing some “acquired immunity.” Even if the new disease was a virus, Mildvan and her colleagues were familiar with the limitations of antivirals and knew that vaccines took many years to develop. Sometimes, a vaccine might not even be possible if the proteins on the surface of the virus mutate regularly. Slight modification in the proteins of the flu virus, for instance, means that last year’s vaccine might not be effective against this year’s influenza strain.
Whatever the cause, there was no disagreement that gay men were the first victims. In early 1981 there were stories about a “gay cancer” or “gay pneumonia,” reported only in gay newspapers, the New York Native, San Francisco Sentinel, and Australia’s Sydney Star Observer. Lawrence Altman, the New York Times medical correspondent, wrote his first article about it that July. Titled “Rare Cancer Seen in 41 Homosexuals,” Altman began: “The rare and often rapidly fatal form of cancer… diagnosed among homosexual men.” He quoted a CDC spokesman, Dr. James Curran, who added to the speculation that it might be a gay-only disease. “The best evidence against contagion,” Curran told him, ‘is that no cases have been reported to date outside the homosexual community or in women.’ ”21 (The Village Voice condemned Altman’s piece as a “despicable attempt of The New York Times to wreck the July 4 holiday break for every homosexual in the Northeast.”)22
People began talking and writing more about the mystery symptoms. In Uganda, dubbed “Slim Disease,” it left its victims terribly emaciated. Doctors treating men imprisoned at New York’s Rikers Island named it after that prison, Rikers Island adenopathy (swollen lymph glands).23 Most of the media stayed focused, however, on the gay nexus. Some wrote about the Gay Plague.24
When the doctors at the National Institutes of Health treated their first AIDS patient in June 1981, they named his condition as GRID, gay-related immune deficiency. Before that patient died in four months, seven different NIH divisions tried solving the mystery as to what had savaged his immune system. After his October death, the three departments with the most expertise in immunodeficiency disorders launched a joint project. It was directed by Samuel Broder, the chief of NIH’s Clinical Oncology Division, Vincent DeVita, the head of the National Cancer Institute and the National Cancer Program, and Tony Fauci, chief of the Laboratory of Immunoregulation.25
In July 1982 the disease had a new name, one that would become the accepted medical standard: human immunodeficiency virus (HIV). The most critical, and often lethal stage of HIV infection was named acquired immunodeficiency syndrome (AIDS). The CDC used the word AIDS for the first time in a weekly report that September.26
The virus that led to AIDS was sexually transmitted, an equal opportunity infector of men and women. In Africa, where it had its genesis, and where scientists later discovered an almost exact primate strain they named simian immunodeficiency disease, it was overwhelmingly a heterosexual disease.II 27 That was the same in the early cases in Europe as well as later for intravenous drug users and hemophiliacs. Gay men were not the reason AIDS started in the U.S. They were simply its first victims. HIV was an opportunistic disease that took advantage of immune systems already under assault from multiple sex partners, recreational drug use, and repeated infections of sexually transmitted diseases.28
Fear in heterosexual America was about whether they might “catch it” from a gay colleague or neighbor. The gay community, particularly men, were cast as scapegoats for the undiagnosed disease. In the coming years, confusion, misinformation, and rumor spread. People’s fears fueled their worst prejudices.
The CDC did not help. In explaining how the disease was transmitted between people, the CDC said it was a result of the “exchange of bodily fluids.” Did that mean vaginal or anal intercourse? Oral sex? Kissing? Perspiration from an infected person? Not even the best journalists were clear what that encompassed. The New York Times’s Lawrence Altman told The Atlantic in 2014: “The journalism community was behind for quite a while in not being more specific about what ‘bodily fluids’ meant. But also, public-health officials weren’t explicit in what they meant by bodily fluids. It was a time when the words ‘penis,’ ‘vagina,’ ‘sperm,’ ‘intercourse,’ ‘rectal intercourse’—those terms weren’t part of the everyday public vocabulary. They may have been in private, but it wasn’t as it is today.”29
At the NIH, Broder, DeVita, and Fauci had assembled a public health emergency team.30 Although that effort drew little public attention, according to Broder “much of the critical work for perhaps the first three to four years of the AIDS epidemic originated with the NIH.” In a later oral history, he expressed frustration that “some scientists and organizations that might have made a contribution, did not respond to the AIDS emergency.”31
A few did not believe the virus would become widely transmitted. That view was reinforced when the CDC confirmed it was possible to get the disease through intravenous drug use.32 Those new patients were overwhelmingly heterosexual. Since they were drug addicts, however, it only added to the perception that AIDS was a disease that affected the fringes of society. “People always ask when AIDS is going to spread to the general population, as they call it,” asked Dr. Sheldon Landesman, an infectious disease expert. “That’s absurd. It implies that those who have AIDS aren’t part of the general population. It implies that they are giving it to us” (emphasis in original).33 III 34
Broder recalled that from 1982 to 1984 while the NIH researchers chased many theories, “there was an enormous sense of pressure and urgency, because there was so little known and so little we could do. As additional cases became known, there was a substantial level of stress and a certain public distrust and confusion, all of which made everyone’s life more difficult.”35 Adding to the anxiety at the NIH, says Broder, was that there were “all sorts of crazy people, who in the Andy Warhol sense of the term, could obtain not only 15 minutes’ worth of fame but possibly build a career [by] promoting ideas without a scientific foundation. This greatly confused the public and to some extent damaged science.”36
The NIH researchers had developed tests to spot drugs that might suppress the AIDS virus in tissue cultures. They found none despite testing hundreds.
By 1984, Broder’s team had focused on antiretroviral drugs, hoping they might hinder the virus from replicating in humans. Burroughs Wellcome, Pfizer, and Merck and Roche worked with those products in their labs. He did not have a receptive audience when he met with top management at the drug firms. “I went to one prestigious company, hat in hand,” he later recounted. “I got about one minute and thirty seconds of a high-ranking officer’s time. It was very disappointing for me. It was emblematic of the issue. There was no real interest in it.”37
Dani Bolognesi, a Duke surgeon, arranged a meeting between Broder and scientists at Burroughs. Broder was interested in a twenty-two-year-old chemotherapy, Zidovudine, also known as azidothymidine (AZT). An academic with NIH funding had developed AZT in the mid-1960s but Burroughs later bought the rights to it. It had never been put on sale because it proved both toxic and ineffective.
There was some resistance in Burroughs to helping the NIH. AIDS was a terrible disease, Burroughs executives acknowledged to Broder, but it was too small a market.
“They made it clear that on the basis of 3,000 patients, there was no way they could practically get involved,” Broder recalls. “As I left, I said, ‘You know, we’re going to have more than 3,000 cases. It is going to be commercially viable for you.’ ”38
They called him back to the conference room where he laid out some of the cataclysmic predictions the CDC had run. Broder said that nothing would get done unless the NIH had a private partner.
Burroughs finally agreed to help. Although the company owned the license to AZT, it had done so little with it that at first it could not even produce samples as it was missing a critical DNA constituent. The NIH supplied the missing chemicals to the company, who finally made enough of the drug for testing at the NIH. The results were good. It was the first drug, according to Broder, that “inhibited HIV viral replication” in the test tube.39
AIDS activists wanted human trials started as quickly as possible. For every day delayed, they contended, someone else died. They protested the failure of Ronald Reagan’s administration to declare AIDS a health emergency capable of infecting anyone.40 In the early years of HIV and AIDS, there were aftershocks from the 1976 swine flu fiasco. Dr. David Sencer, who had been the much maligned CDC commissioner during the swine flu debacle, had said after resigning his government post that if he was ever faced with scientific uncertainty over a possible infectious epidemic, he would err on the side of caution. Sencer had returned to public service as New York City’s health commissioner. Activists accused him of “dragging his feet” when it came to the city’s response to AIDS. At a time when action and speed were essential, Sencer fell short once again.
While once slow or negligent to cover HIV and AIDS, or to cast it as a fringe epidemic, mainstream media outlets by the mid-1980s raced to report that AIDS infections were about to explode. The front covers of national magazines fed a new fear. “Now No One Is Safe from AIDS” (Life); “AIDS: Fatal, Incurable, and Spreading” (People); “The Most Lethal Disease” (Time).41 An American doctor writing in The Lancet compared its potential “vast scope of death” to the fourteenth-century bubonic plague.42 Oprah Winfrey, in her first show about AIDS, passed along a dire prediction: “Research studies now project that one in five—listen to me, hard to believe—one in five heterosexuals could be dead from AIDS at the end of the next three years.… One in five!”43
