And the Band Played On

And the Band Played On: Politics, People, and the AIDS Epidemic is a best-selling work of nonfiction written by San Francisco Chronicle journalist Randy Shilts published in 1987. It chronicles the discovery and spread of HIV and AIDS with a special emphasis on government indifference and political infighting to what was initially perceived as a "gay disease," that has impacted the United States and the world for decades after. The book is an extensive work of investigative journalism, written in the form of an extended time line, the events that shaped the epidemic presented as sequential matter-of-fact summaries. Shilts describes the impact and the politics involved in battling the disease on particular individuals in the gay, medical, and political communities. It begins in the late 1970s in Africa, with the then first confirmed case of AIDS, that of Grethe Rask, a Danish doctor, and it ends with the announcement by Rock Hudson in 1985 that he was dying of AIDS, when international attention on AIDS exploded.

The title of the book appears to be a reference to the oft-repeated story about the dance band in the first-class lounge of the Titanic, which kept playing as the ship was sinking, an allusion to the multiple agencies and communities who neglected to prioritize a swift medical response to the crisis.

A review called it "one of the most important books of the year," upon its release. Randy Shilts described his motivation to undertake the writing of the book in an interview after its release, saying, "Any good reporter could have done this story, but I think the reason I did it, and no one else did, is because I am gay. It was happening to people I cared about and loved."

Subject
Randy Shilts decided to write the book after attending an awards ceremony in 1983 when he received an award for his coverage in the San Francisco Chronicle. In an anecdote that is included in the book, Bill Kurtis gave the keynote address and told a joke: "What's the hardest part about having AIDS? Trying to convince your wife that you're Haitian." Shilts responded to the joke by saying that it, "says everything about how the media had dealt with AIDS. Bill Kurtis felt that he could go in front of a journalists' group in San Francisco and make AIDS jokes. First of all, he could assume that nobody there would be gay and, if they were gay, they wouldn't talk about it and that nobody would take offense at that. To me, that summed up the whole problem of dealing with AIDS in the media. Obviously, the reason I covered AIDS from the start was that, to me, it was never something that happened to those other people."

Shilts focused on several organizations and communities that were either hit hardest by AIDS, were given the Sisyphean task of finding the cause of the disease, or begging the government for money to fund research and provide social services to people who were dying:

The gay community
AIDS in the US first struck gay men and IV drug users in Los Angeles, New York City and San Francisco. Shilts' sources in the gay community tried to remember that last time everyone they knew was healthy, which was the Bicentennial celebration in 1976 when sailors came from all over the world to New York. Some of them carried sexually transmitted diseases and rare tropical fevers. There was a marked difference in these cities between Before in 1980, and After around 1981, for the gay community, when Before marked the period before gay men knew someone, then most or all of their friends who were dying - a time that was looked back upon with a sense of care-free innocence. After became the time when people within the community knew about AIDS.

In New York City, men like Larry Kramer and Paul Popham who had no desire for public acclaim, were forced by bureaucratic apathy into forming the Gay Men's Health Crisis to raise money for medical research and to provide social services for scores of gay men who began getting sick with opportunistic infections. Shilts described the desperate actions of the group to get recognized by Mayor Ed Koch, assistance from the Public Health Department to provide social services and preventive education about AIDS and unsafe sex.

In San Francisco, particularly in the Castro District, gay community politicians like Bill Kraus and Cleve Jones found a new direction in gay rights when so many men came down with strange illnesses in 1980. The San Francisco Public Health Department began tracing the communicable disease and linked it to certain sexual practices, made recommendations to gay men on how to avoid getting sick—stop having sex—a directive that went completely against what the Castro District had fought for for years. Kraus and Jones often found themselves fighting a two-fronted battle: against city politicians who would rather not deal with a disease that affected such an undesirable population as gay men, and the gay men themselves, who refused to listen to doomsday projections and continued their unsafe behavior.

In all three cities, however, the sizeable gay communities themselves in many instances were responsible for raising the most money for research, providing the money for and the actual social services for the dying, and for educating themselves and other high-risk groups up to and beyond 1985. Larry Kramer went on to form ACT-UP as a political activist organization forcing government and media to pay attention to AIDS. Cleve Jones went on to form the NAMES Project.

The medical community
Doctors, of course, were the first to deal with the toll that AIDS would take in the United States. Some would realize their life's course in dealing with patient after patient who showed up in their offices with baffling illnesses, most notably lymphadenopathy, pneumocystis carinii pneumonia, Kaposi Sarcoma, toxoplasmosis, cytomegalovirus, cryptosporidia, and other opportunistic infections that caused death to be a grisly combination of ailments overtaxing a nonexistent immune system. With no information on how the disease was spread, hospital staff were often reluctant to handle AIDS patients, and Shilts reported that several hospitals refused to treat them at all.

Shilts reported how the Public Health Department of San Francisco handled this new communicable disease by tracking down people who were sick, and linking them to other people who had symptoms, some of them living in different parts of the country, and he noted how the New York City Public Health Department did very little, when Public Health Director David Sencer refused to call it an emergency and stated that the Public Health Department need not do anything at all since the gay community was handling it sufficiently.

Around the same time gay men were getting sick in the United States, doctors in Paris, France, were receiving patients who were African or who had lived in Africa with the same symptoms as American gay men. Parisian doctors Francoise Barre, Luc Montagnier, and Willy Rozenbaum began taking biopsies of HIV-affected lymph nodes and discovered a new retrovirus. As a scientific necessity to compare it to the American version of HIV, the French doctors who represented the Pasteur Institute sent a French colleague to the National Cancer Institute where Robert Gallo was also working on the virus. The colleague performed a switch on the samples, Shilts reported, because of a grudge he had against the Pasteur Institute. Instead of Gallo comparing his samples with the French samples, he found the very same retrovirus as the French sample, putting back any new results in AIDS research for at least a year.

Departmental ego and pride, Shilts reported, also confounded research as the Centers for Disease Control and the National Cancer Institutes battled over funding and who might get credit for medical discoveries that were to come from the isolation of the HIV virus, blood tests to find HIV, or any possible vaccine.

Once AIDS became known as a "gay disease" there was particular difficulty for many doctors in different specialties to get other doctors to acknowledge that AIDS could be transmitted to people who were not gay, such as infants born from drug-using mothers, children and adults who had hemophilia (and later, their wives), and people who had received blood transfusions.

The discovery of AIDS in the nation's blood supply and subsequent lack of response by the blood banking leadership occurred as early as 1982. Doctors were able to find evidence of AIDS transmitted through blood transfusions, yet it took until 1985 before blood bank industry leaders would recognize that AIDS was in fact transmitted through blood transfusions. Plus, industry leaders said - according to Shilts - screening donors for Hepatitis alone might offend them, and the cost of screening all the blood donations provided across the country every year was too high to be feasible.

The political and governmental agencies
The Centers for Disease Control (CDC), responsible for tracking down and reporting all communicable disease in the US, faced governmental apathy in the face of mounting crisis. Shilts reported how CDC epidemiologists forged ahead blindly after being denied funding for researching the disease repeatedly. Particularly frustrating were instances of the CDC fighting with itself over how much time and attention was being paid to AIDS issues.

Although Reagan Administration officials like Health and Human Services Secretary Margaret Heckler and Assistant Secretary Edward Brandt spoke publicly about the epidemic, calling it in 1983 its "Number One Health Priority" no extra funding was given to the Centers for Disease Control or the National Institutes of Health for research. What the United States Congress pushed through was highly politicized and embattled, and a fraction of what was spent on similar public health problems.

Shilts made appropriate comparisons to the government's disparate reaction to AIDS versus the Tylenol Crisis of 1982, and the recent emergence of Legionnaire's Disease in 1977.

Shilts is often quoted as claiming that Ronald Reagan neglected to mention AIDS publicly until 1987, even after calling friend Rock Hudson to tell him to get well. After Hudson's death and in the face of increasing public anxiety, Reagan directed Surgeon General C. Everett Koop to provide a report on the epidemic. A political conservative, Koop's report was surprisingly clear about what causes AIDS and what people and the US government should do to stop it, including sex and AIDS education provided for all people.

On a civic level, the closure of gay bathhouses in San Francisco became a bitter political fight in the gay community putting the San Francisco Public Health director on the spot to educate people on how AIDS is transmitted, and to close the bathhouses as a matter of public health.

The news media
Shilts was himself a San Francisco Chronicle newspaper reporter assigned to AIDS full time in 1982. It was from this unique vantage point that he repeatedly blasted the US news media for ignoring the medical crisis because it didn't affect people who mattered, only gays and drug addicts. Shilts noted most newspapers would print stories about AIDS only when it affected heterosexuals, sometimes taking particular interest in stories about AIDS in prostitutes. Many stories called AIDS a "gay plague" or "homosexual disease" in articles that pointed to it showing up in new populations, like hemophiliacs or people who had received blood transfusions. In fact, Shilts recounts more than once the irony of a reporter commenting on how much is not reported about the disease, then linking it once more to rarer instances of transmission to non-drug-using heterosexuals.

On the other end of the extreme, a general phobia of AIDS was assisted by news media who erroneously reported that AIDS could be contracted by household contact, without checking any facts in their stories, which prompted mass hysteria across the nation.

Criticism and recognition
And the Band Played On became a commerical success, contrary to the expectations of Shilts himself. It remained on the New York Times Bestseller List for five weeks, was translated into seven languages, was nominated for a National Book Award, and made Shilts an "AIDS celebrity." Reviews of the work were generally positive, noting, "Shilts has the ability to draw the reader hypnotically into the personal lives of his characters. That, and his monumental investigative effort, would have made this a best-selling novel - if the contents weren't so horribly true." One reviewer agreed, saying, "And the Band Played On reads like a mystery thriller. The fact that it is non-fiction adds to the intensity but also increases the rage the reader is left with." The Los Angeles Times called it, "An important, masterful piece of investigative reporting."

Subsequent books on medical crises including breast cancer, chronic fatigue syndrome, Agent Orange, and continued response to AIDS have been compared to Shilts' book as a standard, characterizing it as a, "groundbreaking book on the history of the AIDS epidemic...every element of a thriller."

And the Band Played On won the Stonewall Book Award for 1988. It earned the 10th spot on 100 Lesbian and Gay Books That Changed Our Lives, compiled by the Lambda Book Report. In 1999, The New York City Public Library topped its list of "21 New Classics for the 21st Century" with And the Band Played On.

In a 1988 book review, The New York Times commented that the detail in Shilts' work was too confusing, being told "in five simultaneous but disjointed chronologies, making them all less coherent," and notes that Shilts neglected to dedicate as much detail to black and Hispanic intravenous drug users, their partners and children. The reviewer also expressed doubts that a swifter response to the government would have stemmed the spread of AIDS as quickly as Shilts was implying. One reviewer was frustrated by Shilts not asking the right questions: "Shilts fails to probe the broader questions and stops where far too many of us stop: We don't ask why the Department of Defense and the entitlements like Social Security are getting all the money when the homosexuals and the IV drug abusers with AIDS and the multiple sclerosis patients are not." Gay groups also criticized the book's implications that a diagnosis of HIV indicated that death was sure and imminent. Richard Rouilard, editor of The Advocate in 1992 criticized Shilts for being out of touch with the contemporary style of activism and its sexual overtones.

Shilts is often quoted as claiming that Ronald Reagan neglected to mention AIDS publicly until 1987. However, Reagan briefly discussed the topic in questions and answers during a news conference on September 17, 1985.

Gaetan Dugas as "Patient Zero"
The book includes extensive discussion of Gaetan Dugas, who died in 1984, who was labeled the "Patient Zero" of AIDS, a claim which has since been challenged. The original 1987 St Martin's Press hardback edition was followed by a 1988 Penguin paperback, which had an addendum covering more recent events. It doesn't re-examine the Dugas story, which was questioned by many, including Dr Paul Darrow, who had done the original cluster study that gave Dugas the codename "Patient O" ("Oh," for Out-of-Town), not "Patient Zero," which has a specific meaning in epidemiology. By definition, Patient Zero, or the Index Case, is the first case in an outbreak. Shilts assumed that Dugas was the original source of the infection among gay men in North America. Darrow had not reached this conclusion at the time he had published his first report on the cluster of puzzling infections. He later concluded that the study had been flawed. Unfortunately, Dugas died in 1984, before he could confirm or deny Shilts' characterization of him. By that time, Shilts had constructed a number of scenes with Dugas, ascribing thoughts or dialogue that could not be confirmed.

After publication
While Shilts was writing the book he was tested for the HIV virus and told his doctor not to tell him if he had it until the book was finished so it wouldn't affect his objectivity. He had observed that everyone he knew who got a positive test became an activist and he wished to remain a journalist. On the day he sent the final manuscript to the publisher, he got the HIV-positive diagnosis. He also revealed that he received abuse from gays for the articles he wrote for the San Francisco Chronicle supporting the bathhouse closures, as well as for And the Band Played On, saying it was common for him to be spat upon in the Castro District. He was also "worshiped" by many in the gay community for writing the book, but also seen as someone who pandered to publicity.

Shilts declared while promoting the book in Australia in 1988 that AIDS in the western world could be eradicated, and by 1994, "AIDS could be as manageable as diabetes." However, in reference to Africa, Shilts noted, "At this point it's inconceivable that there will be an AIDS-free world in Central Africa, as we're looking at a death rate on the scale of the Holocaust." Shilts gave an interview in 1991 where he noticed, "the stellar AIDS reporters in the early years...the people who did the best job-and the reporters who wanted to cover AIDS but their male editors wouldn't let them-tended to be women," and made a connection that if more women were allowed to write about the epidemic, media coverage would have been vastly different.

Randy Shilts died from complications of AIDS in 1994. Upon his death he was eulogized for his work in And the Band Played On by Cleve Jones, who said, "Randy's contribution was so crucial. He broke through society's denial and was absolutely critical to communicating the reality of AIDS." Larry Kramer said of him, "He single-handedly probably did more to educate the world about AIDS than any single person."

Film
And the Band Played On was used as the basis for a 1993 HBO Emmy-winning movie of the same name, produced by Aaron Spelling, directed by Roger Spottiswoode, and starring Matthew Modine as Don Francis and Richard Masur as Dr. William Darrow, doctors at the Centers for Disease Control, and Alan Alda as real-life controversial viral researcher Robert Gallo. The movie also starred B.D. Wong, Glenne Headly, Swoosie Kurtz, and Ian McKellen as Bill Kraus. The movie featured a plethora of other big stars in supporting and cameo roles, who agreed to appear in the film for union-scale pay, such as Richard Gere, Phil Collins, Tchéky Karyo, Lily Tomlin, Steve Martin, and Anjelica Huston. The film was released the same year as Philadelphia and Angels in America, which prompted one reviewer to note it a triumph and a loss, 12 years after the epidemic had begun, such works of art were necessary still to draw attention to it.

Reviews of the film were mixed, claiming that it was a noble try, but failed to be comprehensive enough to cover all the intricacies of the response to AIDS. However, And the Band Played On was noted for raising the standards of HBO-produced films, along with other well-received films at the time.

Film ending
Elton John performs "The Last Song" at the end of the film, appearing during a closing montage featuring many celebrities who died of AIDS-related causes, such as musician Freddie Mercury, who also had a song (Play The Game) featured in the film; actors Rock Hudson, Anthony Perkins, Brad Davis and Robert Reed; tennis player Arthur Ashe, writer Michel Foucault, nurse and "KS poster boy" Bobbi Campbell; and fashion designer Willi Smith.