With consistent, adequate treatment, people with HIV have a life expectancy that is nearly normal. However, because HIV often affects the most vulnerable people in our society, getting that consistent treatment remains a real and important challenge. 30 years after And the Band Played On was first published, HIV/AIDS is now often viewed as a chronic illness, rather than the terminal diagnosis it was in the 1980s. For those born after the first AIDS deaths occurred in the US, it can be hard to imagine the fear, denial, stigma, and confusion that accompanied the early AIDS epidemic. Randy Shilts’ And the Band Played On, is a classic work of investigative journalism that chronicles the response of the government, media, medical/scientific community, gay community, and society at large as the epidemic of AIDS unfolded. He portrays the prescient heroes that recognized the danger of AIDS early, but who also paid great personal and professional prices to confront the crises. Ultimately, the book shows the neglect of the early crisis by the government and the media, the battle within the gay community about the “appropriate” response to AIDS, and the apathy of society at large when AIDS was viewed as a “gay” disease.
Shilts’ picks up the tale of HIV in New York at the bicentennial celebration in 1976. Subsequent research has shown that HIV actually arrived in the US from Haiti in 1970 or 1971, but went unrecognized for some time. Aside from some cases in Africans and Europeans who had been to Africa in the late 1970s, AIDS went basically unrecognized until 1980. At that time, President Reagan was elected on a pledge to reduce government spending and physicians started noticing an unusual uptick in Kaposi’s Sarcoma and Pneumocystis pneumonia.
Clinicians and health officials from the CDC recognized quickly that these illnesses seemed to occur in gay men who had many sexual partners. However, several competing theories were developed regarding the etiology, that ranged from the use of poppers, excess sperm suppressing the immune system, a combination of pathogens suppressing the immune system, and a new infectious agent. By the end of 1980, fifty-five people had been diagnosed with an AIDS related disease in the US, with ten more in Europe, and many more in Africa.
By mid 1981, doctors in New York, Los Angeles, and San Francisco were recognizing a pattern in these cases. They were seeking money and equipment for research, but found they were stifled by federal, state, and university bureaucracies. A case control study from the CDC suggested a disease with a similar transmission pattern to Hepatitis B. Lack of resources and staff at the CDC delayed analysis and publishing of these findings for well over a year. The impact of this delay cannot be overstated, because delays lead to definitive actions not being taken. These actions could have been recommendations to close bath houses, specific safe sex practices, or screening blood based on stronger evidence of an infectious cause of disease. By August 1981, about twenty clinicians and scientists saw the horror of what was coming. They spent the next three and a half years trying to convince the rest of the United States of the urgency of the epidemic that was to come.
Shilts’ compares the resources devoted to HIV in the early days to those devoted to Toxic Shock Syndrome and Legionnaire’s disease and speculates that stigma against gay men, particularly “promiscuous” gay men likely contributed to the financial resources directed to the disease. Mainstream media outlets did not start reliably covering AIDS until it became clear there were heterosexual victims of the disease. The Reagan administration insisted that scientists had all the money and equipment they needed, despite scientists clamoring a relative pittance to conduct their research and significant delays in research due to simple problems like a lack of a fume hood or a statistician. Scientific rivalry between Dr. Robert Gallo from the National Cancer Institute and scientists at the Pasteur Institute in Paris, prevented the recognition that the Parisians had discovered the causative virus for about a year. A history of discrimination caused some in the gay community to resist closure of bath houses for want of further proof of an infectious cause of the disease and fear of quarantine of gays and loss of civil rights. Physicians in charge of blood banks resisted screening blood because of financial cost and because they minimized the risk of infection in the blood supply. At the same time, innovators like Gay Men’s Health Crisis were creating a health and social services structure for people with AIDS out of nothing. Drs. Marc Conant and Paul Volberding were creating innovative clinics and hospital wards in San Francisco. Bill Kraus and Tim Westmoreland were investigating delays in AIDS research and forcing funding for AIDS research and services through Congress, knowing that the President would not veto funding that arrived at his desk. The story of the early AIDS epidemic is one of people with foresight facing nearly insurmountable obstacles to doing the right thing.
About the Author
Randy Shilts was a reporter for the San Francisco Chronicle. He started covering AIDS full-time in the early 1980s. In an interview, he said that any good reporter could have covered AIDS, but he was called to cover the story because he was gay and it affected people he knew and loved. He waited until after completing the manuscript for And the Band Played On to get tested for HIV because he was concerned that knowing his status would affect his reporting. He was diagnosed with HIV in 1987 and died of AIDS in 1994
Why this book?
And the Band Played On has so many lessons for healthcare practitioners that are applicable today. This book shares the courageous stories of many heroes we should emulate as we act as “natural attorneys” for our patients. Through the obstacles these activists, politicians, and scientists faced, we can learn how to get government, media, and society to recognize that the health of our most vulnerable citizens impacts the health of us all. When catastrophes like HIV/AIDS happen, we often say “never again”, yet we find ourselves facing similar apathy and denial in responding to other recent infectious diseases like Ebola and Zika and in allocating resources to public health in general.
Book Club discussion with Drs. Amy Walsh, Deborah Rose, and Jordana Haber
- How can we respond when we see looming catastrophe, but bureaucracy disagrees or moves too slowly?
- How can we as a medical community be less dismissive of the renegade thinkers who are able to see the implications of a clinical problem early?
- Too often “medicine” sides with the powers that be. How can we make staid medical culture more radical and take up the cause for the “untouchable”?
- “How very American, he thought to look at a disease as homosexual or heterosexual, as if viruses had the intelligence to choose between different inclinations of human behavior.” (p. 103) How do you think American social mores impacted the scientific and journalistic response to the disease? Are there particular people that you see as being at risk of being victimized by similar moral judgment today?
- “Don’t offend the gays and don’t inflame the homophobes. These were the twin horns on which the handling of this epidemic would be torn from the first days of the epidemic.” (p. 68) What are your strategies for telling people things they need, but don’t want to hear? What would the consequence of a more direct approach have been?
- After Paul Popham’s experience trying to fundraise for Gay Men’s Health Crisis on Fire Island he thought to himself, “How do you help a community that doesn’t want help?” (p. 92)
- Shilts demonized Gaetan Dugas in his telling of the early AIDS epidemic. Dugas’ reckless attitude toward exposing others to HIV was representative of many who continued to frequent bath houses after being diagnosed. However, his culpability in the early spread of the disease was exaggerated based on subsequent epidemiological research. How do you think this portrayal of an AIDS villain affected the response to AIDS and LGBT people?