And the Band Played On: Politics, People, and the AIDS Epidemic


And The Band Played On by Randy Shilts is one of my top 5 books, a masterpiece of investigative reporting. It tells the story of the beginning of the AIDS epidemic in the United States, and how it was allowed to happen. All of our institutions failed to do anything: Gay political leaders treated it as a PR problem, the Reagan administration treated it as a budget problem, and the media largely ignored it. It is a story of how politics came before saving lives.

Before

The last time everyone remembered being healthy was the 1980 San Francisco Gay Pride Parade, where 30,000 participants marched past 200,000 spectators. The gay community of San Francisco had taken a lot of pride in their achievements. Over the course of the 1970s, thousands of gay men migrated to San Francisco, to the point where 40% of the city’s adult men were openly gay. Through voter registration drives, they had made 1 in 4 voters in San Francisco gay, giving them a lot of political power within the city. Bill Kraus, an activist, even included a plank in the 1980 Democratic Party Platform that acknowledged that gay people existed, though it didn’t demand any rights. Gay men also participated in many charitable activities, from assisting doctors develop a Hepatitis B vaccine to frequent blood drives. Five to seven percent of blood donors in San Francisco were gay, and blood bankers always knew they could count on the gay community to donate in the case of shortages. 

Among public health officials and doctors, however, there were some concerns. Almost all gay men were infected with Hepatitis B, and gay men were coming down with all sorts of STD’s and intestinal parasites from frequent sexual partners. What if a new pathogen got loose in this community?

The Gay Community

Over the course of 1981, doctors in New York, San Francisco and Los Angeles began to notice unusual diseases in gay men - Kaposi’s Sarcoma and a pneumonia caused by the fungi Pneumocystis . Normally, Kaposi’s Sarcoma (KS) is benign as far as cancers go - it typically afflicts Mediterranean men in their 60’s and 70’s who go on to die of other things. Pneumocystis pneumonia (PCP) is similarly exotic - it’s a fungi that is usually kept in check by the immune system, but likes to live in the warm, damp environment of our lungs. Doctors put out a warning in the CDC’s Morbidity and Mortality Weekly Report (MMWR) terming it “GRID” Gay-Related Immune Deficiency.

These diseases were a lot more aggressive than normal, killing the men afflicted a few months after they were diagnosed with the mysterious immune deficiency. The diseases were particularly gruesome ways to go. One man had a KS lesion the size of a golf ball lodged in his throat, which would close his windpipe if he laid down. This forced him to sit at all times - he couldn’t even lay down to die.

Scientists at the CDC hypothesized two potential causes of GRID - nitrate inhalants, known as poppers, or a virus spreading through sexual contact. It was noticed that GRID showed up in men who were the most promiscuous and frequented gay bathhouses. However, this was confounded by the use of poppers among this group as well - legal drugs used as a stimulant and muscle relaxer. The CDC hoped that a bad batch of drugs was causing GRID, since all that would be needed was to confiscate the drugs. However, it soon became clear that the disease was too widespread to be caused exclusively by poppers. By 1982, it was clear a virus was causing it, and it was spreading - hundreds of cases were diagnosed, and 300 had already died nationwide. Worse, as the epidemic went on, scientists found the disease had a long incubation period, 5.5 years, if not more - doctors were only seeing the tip of the iceberg. Over time, as more risk groups were discovered, the disease was named AIDS - Acquired ImmunoDeficiency Syndrome.

Public health officials clearly needed to take action to prevent the virus from spreading further, but they did very little. Instead, to avoid inflaming homophobes and offend gay men, they hosted endless committee hearings where decisions were postponed to be studied further. They developed a vocabulary known as AIDSpeak, designed to downplay the gravity of the epidemic as much as possible. There were no AIDS victims, instead there were PWAs - People With AIDS. People were advised to cut down on their sexual partners and reduce their drug use rather than stop risky behaviors altogether. “Semen” became “bodily fluids” - everyone was uncomfortable spelling out exactly how the virus was transmitted. The language was designed to do nothing rather than take action:

AIDSpeak was the tongue designed to make everyone content. AIDSpeak was the language of good intentions in the AIDS epidemic; AIDSpeak was a language of death.

The biggest failure of the public health authorities was the bathhouse controversy in San Francisco. There were many gay bathhouses in San Francisco, New York, and North America where gay men went to have sex. It was known even before the pandemic that the bathhouses were breeding grounds for venereal disease; an average bathhouse patron, with their 2.7 sexual contacts a night, had a 33% chance of walking out with syphilis or gonorrhea. If it could spread other STDs, it would be an effective vector for spreading AIDS. And yet the decision to shut down the bathhouses was endlessly delayed in San Francisco. The bathhouses were important to the gay community; many of their proprietors were leaders in the gay political movement and key advertisers for gay newspapers. Some were motivated by profit rather than gay rights: one owner told an AIDS doctor that “we get paid when they come in, and you get paid when they come out”. After a lengthy fight, bathhouses were obliged to put up posters warning patrons of the danger of AIDS, but they put them in the darkest corners of their establishments, if they bothered to at all. Those like Bill Kraus, who fought to close the bathhouses, were labeled as secret homophobes, “Sexual Facists”, and “Monagamists”. Eventually, gay activist Larry Littlejohn took advantage of San Francisco’s referendum process to put an ordinance to ban sexual activity in the bathhouses on the ballot. Only once it became clear that the ordinance would pass did Public Health Director Merwyn Silverman use his authority to close the bathhouses to sex in 1984, years after he was initially advised to shut them down. 

This is not to say the gay community did nothing as they were faced with an unprecedented crisis. Organizations such as the Gay Men’s Health Crisis and Kaposi’s Sarcoma Foundation raised money and provided comfort to the stricken, not an easy task as the government provided no resources at all. Activists such as Bill Kraus and Larry Kramer tried to sound the alarm and pressure the government.

Gaetan Dugas

Gaetan Dugas was a Quebecois-Canadian flight attendant who was one of the earliest gay men to come down with symptoms of AIDS, in 1980. Gaetan, because of his job, flew between many different cities and participated in gay life across North America. He was known for his attractiveness and desirability - he estimated he had at least 2,500 different sexual partners over his lifetime. The author erroneously refers to Gaetan as “Patient Zero” (AIDS was present in the US before him), linked to to the earliest AIDS cases. The book says that Gaetan was the link between clusters of KS and PCP in New York, San Francisco and Los Angeles - men in these clusters either had sex with Gaetan or had sex with someone who had sex with Gaetan. However, this was more because of Gaetan’s extensive willingness to help researchers contact trace AIDS cases than actually being “Patient Zero”. Gaetan kept extensive documentation of his sexual contacts in an address book and doctors were able to trace most of his sexual contacts, unlike other gay men.

However, there is a dark side to Gaetan: even after he was told he was infectious, he continued to go to the bathhouses and have sex there. While in public Gaetan denied that he was infectious - in his words, you couldn’t spread cancer - there were rumors that he was intentionally infecting other people:

It was around this time that rumors began on Castro Street about a strange guy at the Eighth and Howard bathhouse, a blond with a French accent. He would have sex with you, turn up the lights in the cubicle, and point out his Kaposi’s Sarcoma lesions. “I’ve got gay cancer,” he’d say. “I’m going to die and so are you.”

Blood

Over the course of 1981, non-gay men, principally heroin users and their female partners, starting coming down with Pneumocystis. At first, it wasn’t clear to doctors that this was the same disease that afflicted gay men; They never came down with Kaposi’s Sarcoma. However, once it became clear this was the same illness, doctors began to suspect a second transmission route for the suspected virus—through the sharing of needles. If this was true, it would also show up in blood products. Their worst fears were soon confirmed: they found suspected AIDS cases in hemophiliacs, their female sexual partners, and people who had received a blood transfusion. 

The CDC set up a meeting with blood bankers and showed them the evidence that AIDS could be transmitted via blood transfusions. They asked that, since gay men infected with hepatitis B were also likely to be infected with the unknown virus that caused AIDS, they test donated blood for hepatitis B antibodies. The blood bankers were reluctant to take action because it would increase the cost of their product, and they did not want to be associated with something as tawdry as AIDS. In addition, Congress shielded blood banks from product liability laws. Blood bankers continued to insist that the odds of transfusion AIDS were 1 in a million. Some blood bankers were willing to ask people to self-defer if they were a member of a risk group, but it became clear that people were donating even if they were a member of a high-risk group. The clotting factor manufacturers, not protected by law, decided to implement testing; they also created a heat-treated version of factor VII that would kill any viruses inside, but they doubled the cost of the heat-treated product. Later on, the blood bankers would be forced to settle with people who contracted AIDS through a transfusion, citing negligence.

The Media

Compared to other health scares across the country, the media’s response to AIDS was muted. The New York Times, home to the city with the highest AIDS caseload, published three articles on the disease in 1981 and three in 1982. The entire national media published less than sixty articles in 1982, and most of those were about infant AIDS cases. This silence even extended to the obituaries of those who died of AIDS. Many victims and their families were ashamed to be known as gay, so they simply said they died after a long illness. Thus, even as thousands were dying of AIDS, nobody had it, and nobody died of it. AIDS stories, when they were written, were given to the science reporters, who tended to focus on the mystery of the disease, the scientists investigating it, and the possibility of a cure. They did not ask questions about why the government was doing so little or if the health authorities were responding appropriately.

The media, however, would periodically freak out when non-heroin-using heterosexuals were at risk of AIDS. In 1983, Anthony Fauci wrote a paper saying it was possible AIDS could be spread via household contact. Other scientists were flabbergasted, because at that point the transmission vectors for AIDS were well understood. While Fauci insisted his words were taken out of context, the paper sent the media into a feeding frenzy: “normal” people could be afflicted by AIDS. The media published dozens of articles saying AIDS could be spread via household contact. AIDSSpeak also worked against inflaming panic - “bodily fluids” meant semen and blood, but nobody wanted to say that. Nobody wanted to say the former, and blood bankers objected to the latter being included. Instead, the media interpreted “bodily fluids” to mean “saliva” as well. Could AIDS be spread by coughing? These articles would create prejudice against AIDS patients in the future; once people thought scientists weren’t sure how AIDS was spread, they wanted to keep away from AIDS victims as much as possible. Police officers in San Francisco demanded that they be given PPE for dealing with possibly gay men. Morticians in New York City argued they shouldn’t have to embalm AIDS victims.

One man, however, would make all the difference: Rock Hudson. Rock Hudson was a popular leading man in Hollywood, starring in many romantic films in the 1950s and 1960s. He was diagnosed with AIDS in 1984, and traveled to France for treatment while keeping his diagnosis a secret. After collapsing, it was leaked to the press that Hudson had AIDS. The discovery that a man who was a close personal friend of President Reagan, a man considered the archetype of wholesome American masculinity, was a closet homosexual was shocking. AIDS immediately became a top subject of media, and a fashionable cause. The gay community resented that thousands of them had died with barely a peep, and what it took to get attention was a has-been closet case.

The Government

While people were dying, the government’s response was indifference. San Francisco had the best (and only) response to the AIDS epidemic, making some efforts to educate its citizens about the dangers and providing services for AIDS victims. However, because of the city’s glacial consensus-based politics, it took until 1983 to mount an official response.

New York City, with 40% of the nation’s AIDS cases, did almost nothing at all. Mayor Ed Koch, attacked by his political opponents as gay because he was unmarried, did not want to further associate himself with gay men. The city looked for any excuse to not spend any money, and left the issues up to the gay community. By the end of 1983, the city had spent $24,500 in total on AIDS. Instead of education efforts, the city relied on the gay newspaper, the New York Native to educate gay men about AIDS. However, the Native only had a circulation of 20,000 in a city with a gay population of 500,000. Only 1 in 25 gay men read it, and the rest were not told about the new pandemic. 

At least in San Francisco and New York, there were public hospitals and AIDS wards that could provide reasonable care to the sick. In contrast, the rest of the nation was woefully unequipped to deal with it. In Florida, for example, a 27 year old man was being treated at a private hospital for the opportunistic infection cryptosporidiosis. When his state Medicaid benefits ran out, the hospital demanded he leave. However, there was nowhere for him to go; nursing homes in Florida did not accept AIDS patients, and there were no public hospitals that could take him. The hospital decided to fly him to San Francisco and dump him at a hospital there. While it cost $14,000 to charter the jet, it was cheaper than the $100,000 in hospital bills a typical AIDS patient accumulated. The man soon died afterwards. Doctors in San Francisco accused Floridian authorities of hastening the man’s death.

Only the federal government had the resources and authority to respond nationally. However, the Reagan administration treated the pandemic as a budget crisis rather than a health crisis. Even before AIDS, the administration planned to cut the CDC’s budget in half and distribute it to the states in block grants. As scientists started to sound the alarm on AIDS, the CDC and NIH were expected to take money from other programs to research AIDS rather than get new appropiations.  Congress, concerned that not enough resources were provided, often forced the administration to spend more money. Even when Congress authorized more money for AIDS, the administration restricted how the money could be spent in the hopes of returning it to the Treasury. For example, the CDC was unable to hire more staff to deal with the epidemic. Administration officials were instructed to tell Congress that they had more than enough money to fight AIDS, even as scientists begged for resources in internal memos. Even with spending boosted by Congress, it amounted to very little: in 1982, $8,991 was spent per AIDS death at the NIH. In contrast, Legionnaire’s disease, a disease that affected the politically sympathetic, received $34,841 per death.

Reagan himself was silent on AIDS, not mentioning the pandemic publicly until 1985. Listening to the President, you would not have known that a pandemic was going on at all. Even when he did talk about it, he spoke more about testing and identifying the HIV-positive than developing a treatment. However, his evangelical political allies were not shy about blaming the pandemic on the homosexual agenda and actions of the victims for AIDS.

The Scientific Community

As scientists and doctors raced to find the cause of the mysterious immune disorder, they were stymied by politics. Many researchers were told they were ruining their careers by focusing on a stigmatized gay disease. Dr. Jay Levy, whose lab would become one of the three labs to isolate HIV, was stalled for six months because the UC Berkley would not grant him $1,500 for a filter. Undeterred, he and Dr. Marcus Conant went to the California Legislature, which appropriated funds for the filter. However, the university administration jealously guarded their powers to dispense funding, and were furious he went over their heads. As revenge, they made every effort to stall the release of the funds. Later, when more grants for AIDS research were available, Dr. Levy and Dr. Conant were frozen out entirely by the administration and forced to leave the university.

The scientists chasing AIDS were not perfect. Bureaucratic squabbling often took a front seat to actual bench work, and in the race to discover the cause of AIDS first, scientists were unwilling to cooperate with each other. Scientists at the NIH looked down on the CDC’s epidemiologists as amateurs and were unwilling to share lab samples with them. At the NIH, in turn, Dr. Robert Gallo’s National Cancer Institute (NCI) feuded with Dr. Anthony Fauci’s National Institute for Allergies and Infectious Diseases (NIAID). Because many AIDS patients came down with Kaposi’s Sarcoma, the NCI thought they should handle it. NIAID thought they should have priority because AIDS had so many opportunistic infections associated with it. Scientists in competing institutions duplicated work and siloed information, stalling progress on identifying the cause of AIDS.

One controversy would cause an international incident: who discovered the AIDS virus. HIV was originally isolated in 1983 at the Pasteur Institute in Paris by Dr. Françoise Barré-Sinoussi and Dr. Luc Montagnier. They named it LAV, or lymphadenopathy-associated virus, and noted that the virus was associated with AIDS but were not sure it was the cause of AIDS rather than an opportunistic infection. They struggled to publish their results, however, as most of the scientific world was looking to Dr. Robert Gallo’s lab at the NCI to find the cause of AIDS. Dr. Gallo’s who worked in human Lukemia viruses and the immune system, proposed that a virus in the HTLV family he discovered was the cause of AIDS. Once it became clear that LAV was the caused of AIDS, Gallo stole credit for discovering the virus by stealing samples from the French. In one incident at a 1983 conference, where the LAV researchers were going to present their findings, Dr. Gallo had another presenter at the conference stall for time so the French would be unable to do their talk. The Reagan administration, eager to take credit for doing something about AIDS, backed Dr. Gallo, and eventually President Reagan and President Mitterrand compromised, naming all three researchers as co-discoverers of HIV.

Testing

When Dr. Gallo announced he had “discovered” HIV, he also said a test would be available within six months and a vaccine in two years. This prediction proved to be overly optimistic; it took another year to develop a test, and vaccine research is ongoing to this day. Once a test was available, random sampling was done, and 35% of gay men on the east coast were found to be infected with HIV in 1985.

Epidemiologists finally had a tool to see the extent to which HIV had penetrated America. However, the gay community was afraid of a test that could out you as gay. Not only were there social and economic consequences from discrimination, but health insurance companies might want to drop potential AIDS patients from their rolls. The federal government could have required that the test be subject to federal confidentiality guidelines, but officials were reluctant to take those steps. The administration was taking a more forthright anti-gay stance and nobody wanted to be seen helping homosexuals.

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