17: Randdy Shilts

Excerpt from And the Band Played On: Politics, People, and the AIDS Epidemic Published in 1987.

Acquired immunodeficiency syndrome (AIDS) is a collection of infections and symptoms that result when a person's immune system has been damaged by the human immunodeficiency virus (HIV). The immune system is the body's complex, internal set of parts that fights off destructive germs and organisms. AIDS was first recognized in 1981. More than twenty-five years later, there was still no known cure. As of the beginning of 2006, more than 25 million AIDS sufferers had died, making it one of the most destructive, widespread diseases in history.

The term AIDS was not widely used until 1982. By then, more than 800 people in the United States had died with AIDS symptoms. By 1983 the number of Americans who had died with AIDS had climbed above 3,000, and in 1984 alone there were more than 4,000 AIDS-related deaths. It was not until 1985 that reliable testing for HIV, the virus that causes AIDS, was developed. It took the U.S. government until 1986 to publish its first detailed report on AIDS. More than 16,000 Americans had died of the disease by that time.

"Access to [AIDS] test results could possibly result in wide-spread discrimination against gays by employers, insurers, or a government that might turn repressive toward gays in future years."

AIDS awareness had grown gradually during the 1980s, but the publication of And the Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts (1951–1994), provided the first widely read history of the disease and its victims. The book also detailed the slow response of both the medical community and the U.S. government in addressing the disease as well as the lack of attention given to AIDS by news media. In addition, Shilts discussed the initial reluctance of members of the gay community to accept the changes in lifestyle that are necessary for the prevention of HIV. The gay community, which is made up of individuals who are attracted to others of the same sex, is one of the groups most directly affected by AIDS. By the time America "paid attention to the disease," wrote Shilts in his book, "it was too late to do anything about it."

Shilts had been hired by the San Francisco Chronicle newspaper as a reporter in 1981 and was assigned to cover stories about the city's large gay community. His articles about a new disease striking gay men were among the first reports on AIDS in the mainstream, or leading, newspapers and magazines. Shilts began focusing his coverage on AIDS, eventually collecting stories about people infected with HIV and their interactions with the medical community.

As he began collecting the stories for a book, Shilts incorporated findings by Dr. William Darrow, who had been assigned by the Centers for Disease Control and Prevention (CDC) to participate in a task force investigating AIDS. The CDC is one of the thirteen major operating units of the U.S. government's Department of Health and Human Services. It's also the principal government agency responsible for protecting the health and safety of all Americans. Shilts also added results from his own research on the slow and costly response to the pandemic, which is a disease that spreads over a wide area, such as an entire country or throughout the world. The AIDS pandemic "was allowed to happen by an array of institutions," concluded Shilts in his book, "all of which failed to perform their appropriate tasks to safeguard the public health."

Things to remember while reading the excerpt from And the Band Played On: Politics, People, and the AIDS Epidemic:

• The book's title is an expression used on several occasions in song lyrics. Typically in those lyrics, the band plays on while tragic and confusing events happen all around.
• The book takes the form of an extended timeline, a sequence of events related to AIDS presented as summaries that reflect the struggles of individuals as well as the larger society, the medical and scientific community, the government, and the media.
• To help the general public understand more about the victims of AIDS, Shilts presents the experiences of both little known and well-known patients, physicians, and researchers. Other parts of the book depict the variety of responses made by local and national politicians and disagreements within the medical science community that delayed reliable identification of the AIDS virus.
• The excerpt from And the Band Played On begins with the story of a woman who contracted AIDS through a blood transfusion. In fact, in the early years of the disease, many of the people who contracted AIDS were infected through blood transfusions. Because it took more than five years to develop a test to check for AIDS in blood before it was used in a transfusion, many people got the disease in hospitals. The AIDS epidemic continued to grow in Africa and Asia during the 1990s and even in the early twenty-first century because many nations were slow to adopt blood testing.

• In the excerpt, Shilts writes: "Surveys of gay men indicated that as many as 75 percent planned to take the antibody test once it was available. Concern soared that, once blood banks started screening, the men would go to a blood bank and donate blood in an effort to learn their antibody status." This concern surfaced during the 1980s because many gays who wanted to be tested for AIDS chose to go to blood banks rather than their doctors. It was easier for them to remain anonymous at blood banks. Many gays were concerned that the medical records kept by their doctors could be used to identify them if a social or governmental crusade against homosexuals began.
• Shilts talks about Pneumocystis, also called pneumocystis pneumonia (PCP), which is the most common opportunistic infection found in people with HIV. An opportunistic infection occurs because an immune system is weak and can't fight off the spread of germs, viruses, and disease. During the early days of the AIDS epidemic, more than 85 percent of people with HIV eventually developed PCP if they didn't receive treatment. Prior to the early twenty-first century, it was the major killer of people with HIV. However, PCP has since become almost entirely preventable and treatable.

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

January 10 [1985]

Cathy Borchelt was at work in the San Francisco Police Department's record room when a co-worker handed her the morning Chronicle [a San Francisco newspaper] and asked about the story on page eight. It was an announcement by the Irwin Memorial Blood Bank that an ailing, unnamed woman at Seton. Medical Center had contracted AIDS through blood provided by Irwin in August 1983.

"Is that your mom?"

It was the first time anybody in the Borchelt family was informed that Frances was indeed suffering from transfusion AIDS.

"I've been suspecting this because the doctors said she had Pneumocystis, " Cathy said as she scanned the story.

"There's a lot of Pneumocystis going around," her colleague agreed.

Cathy knew her mother was an intensely private woman and would not want to see anything about herself in the newspaper, even if it did not carry her name. She called the hospital to make sure nobody put a copy of the Chronicle in her room.

That evening at the hospital, Cathy was watching television with Frances when the newscaster began talking about the new transfusion case in Seton Medical Center. Frances Borchelt shook her head sadly at the news.

"That poor lady," she said. "If it were me, I'd sue."

Cathy was shocked. Obviously, nobody had told her mother yet that she had AIDS. That night, Bob Borchelt insisted that the doctors tell Frances what had happened.

The next day, Frances didn't say anything about the conversation she had had with her doctor, although the family noted that she seemed depressed.

The woman in Seton Medical Center was the 100th American known to have contracted AIDS through a blood transfusion, Irwin president Brian McDonough said the next day. As part of a new policy of openness, Irwin was now publicly announcing each new case of transfusion AIDS. The intent was to allay [ease] any suspicion that the blood bank was whitewashing [covering up] the transfusion-AIDS problem. In revealing Frances's diagnosis, McDonough added that thirty-two AIDS patients had donated blood to Irwin in recent years and that at least seventy-two local people had received blood products from these donors. The blood bank expected another two dozen AIDS cases from recipients of its products in the next year.

The Irwin policy of candor [honesty] infuriated other blood bankers who were still clinging to their one-in-a-million rhetoric, if not declining comment on the problem of transfusion AIDS altogether. Blood bankers were anxious to get the entire AIDS problem behind them. That would happen with the release of the HTLV-III antibody test, when at last they could pronounce the blood supply safe from AIDS.

The Food and Drug Administration had announced a February 15 release date for the screening test. Local public health officials and gay organizations, however, continued to be concerned about its vast policy implications [consequences]. In few issues had social, political, psychological, and medical variables converged to create such a policy morass [mess].

Surveys of gay men indicated that as many as 75 percent planned to take the antibody test once it was available. Concern soared that, once blood banks started screening, the men would go to a blood bank and donate blood in an effort to learn their antibody status.

Meanwhile, scientists were uncertain as to the accuracy of the test. Dr. Robert Gallo said in early January that the test might not detect between 5 and 30 percent of AIDS virus carriers. The problem stemmed both from the test's accuracy and the fact that it did not appear that people developed detectable HTLV-III antibodies until six weeks after infection. Thus, somebody recently infected with the AIDS virus would not test positive on the antibody test. This left health officials worried that if gay men donated blood to learn their antibody status, some infected blood might slip through the AIDS screening, further contaminating the blood supply.

Added to these fears was the growing anxiety about the civil liberties [personal freedoms] implications of blood testing among gay men. With as many as one-half of gay men testing positive for HTLV-III in some studies, it appeared that the test could well become a de facto test for sexual orientation. Access to test results could possibly result in widespread discrimination against gays by employers, insurers, or a government that might turn repressive [oppressive] toward gays in future years.

All this could happen even while the medical value of the test remained in some doubt. Official estimates still put the number of antibody-positive people who would develop AIDS at between 5 and 10 percent, although it was still not possible to predict which group that might be. Because the test had little predictive [predictable] value, therefore, the newest axiom of AIDSpeak became "the test doesn't mean anything."

Translating all these concerns to policy became the task of Dr. Mervyn Silverman, who was president of the U.S. Conference of Local Health Officers. Silverman put together a proposal that seemed to meet everyone's needs, seeking money for alternative test sites in which gay men and other concerned people could be tested outside the blood banks. Silverman also wanted the government to issue regulations assuring the confidentiality of blood bank test results, so employers or government agencies could not subpoena them for purposes unrelated to protecting the blood supply.

The proposals were greeted with enthusiasm at the Centers for Disease Control, which had long grappled [struggled] with the complexities of AIDS policy. In meetings with federal officials, however, Silverman ran into a brick wall of resistance. The alternative test sites would cost money, he was told, and the federal government had no plans to expend more money on AIDS. As it was, the Reagan administration still had not released the more than $8 million that Congress had appropriated [set aside] the October before to speed the antibody test to blood banks. Moreover, the government would do nothing to assure confidentiality for blood bank test results. That should be handled on the local level, officials said.

In a January 15 meeting with representatives from the Food and Drug Administration, Silverman got tough. If the government did not release funds for the alternative test sites, he would publicly announce that federal officials were fashioning a new threat to the blood supply. He gave the FDA a two-week deadline. Angry at being handed ultimatums [demands], administration officials told Silverman he was just looking for a way to line the pockets of his health department. The charge amused Silverman, coming as it did on his last day as public health director of San Francisco.

What happened next …

And the Band Played On became a best-selling book and helped attract attention to and encourage the understanding of the disease. AIDS awareness programs became more prominent, and more information about causes, prevention, and testing were made available. However, as Shilts noted in a new chapter of his book published in 1988, even after AIDS had become "infinitely more respectable as a cause and subject of discussion" and most Americans wanted to respond compassionately to the problem, "in Congress, in the White House, at the National Institutes of Health and in the media, very little had fundamentally changed. The band still played on."

As a pandemic, AIDS is a worldwide phenomenon. More information and programs continue to help fight the spread of AIDS. In 2001 representatives of 189 nations gathered at the first ever Special Session of the United Nations General Assembly on HIV/AIDS. They unanimously adopted the Declaration of Commitment on HIV/AIDS, acknowledging that the AIDS epidemic constitutes a "global emergency and one of the most formidable [frightening] challenges to human life and dignity." The Declaration of Commitment covers ten priorities, from prevention to treatment to funding. It was designed to help meet the goal of halting and beginning to reverse the spread of HIV/AIDS by 2015. Drugs and medicines have been developed to help slow and counteract the effects of HIV, but the disease continued to spread. Around 5 million people became infected with HIV in 2003, more than in any previous year.

AIDS activists note that much more effort is needed. In 2005 alone, AIDS is estimated to have contributed to more than 3 million deaths worldwide, with more than 570,000 of those being children. In 2005 between 4 and 7 million people were newly infected. Between 36 and 45 million people were living with HIV in 2006.

Did you know …

• And the Band Played On: Politics, People, and the AIDS Epidemic was adapted for a movie initially broadcast by the Home Box Office (HBO) cable network in September 1993.
• Shilts learned he was infected with HIV the day he wrote the final page of And the Band Played On in March of 1987. He had been tested a year earlier but asked not to be told the result, fearing it might influence his reporting.
• And the Band Played On also details the efforts to find a male airline attendant, called "Patient Zero," who was among the first to spread the disease in North America. The patient had reportedly contracted the disease in Africa and brought it to the United States. The book generated controversy because Shilts named the patient. This man's identity was later put in doubt by public health experts.

Consider the following …

• Make a list of five things you currently know about AIDS. Use the list to perform research, comparing what you currently know with the results you find in your research. While conducting research, add five more items to your list that you knew or discovered about AIDS. Write about the ten things on your list and whether you feel you have enough information and are receiving enough information to understand AIDS prevention.
• Research other pandemics, including the Bubonic Plague of the sixth, fourteenth, and seventeenth centuries or the influenza pandemic of 1918–19. Write about some of the reasons, including slow reactions by societies, that contributed to the millions of deaths. Consider some of the potential pandemics of today, and research and write about things being done to prevent them, prepare for them, stop them, and to educate the public about them.
• Research and write on the topic "The Changing Perceptions of AIDS." Consider how action to understand and prevent AIDS developed in different parts of the world.

For More Information

BOOKS

Bardham-Quallen, Sudipta. AIDS. Farmington Hills, MI: Kidhaven Press, 2005.

Bull, Chris, ed. AIDS, While the World Sleeps: The First Twenty Years of the Global AIDS Plague. New York: Thunder's Mouth Press, 2003.

Kinsella, James. Covering the Plague: AIDS and the American Media. New Brunswick, NJ: Rutgers University Press, 1990.

Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin's, 1987.

PERIODICALS

Adler, Jerry, and Cary Monserate. "And the Band Stopped Playing." Newsweek (February 29, 1994).

Weiss, Mike. "Randy Shilts Was Gutsy, Brash and Unforgettable." San Francisco Chronicle (February 17, 2004).

Wills, Garry. "Interview with Randy Shilts." Rolling Stone (September 30, 1993).

WEB SITES

"HIV/AIDS Prevention." U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC). http://www.cdc.gov/hiv/dhap.htm (accessed on June 10, 2006).

"Uniting the World against AIDS." Joint United Nations Programme on HIV/AIDS (UNAIDS). http://www.unaids.org/en/ (accessed on June 10, 2006).

Transfusion AIDS: When a person is given blood tainted with HIV during a blood transfusion.

Pneumocystis: Also called pneumocystis pneumonia (PCP); the most common infection in people with HIV.

Blood bank: A place that accepts and stores blood to be used in blood transfusions.

One-in-a-million rhetoric: Refers to the number of people that blood bank executives initially claimed would contract AIDS through blood transfusions.

HTLV-III antibody test: A test that detects strains, or varieties, of HIV in the blood.

Food and Drug Administration: A U.S. government agency that regulates food and medicine.

Dr. Robert Gallo: (1937–), American scientist who in 1984 co-discovered that the HIV virus causes AIDS.

Test positive: Showing that they had the virus.

De facto test: A common practice where there is no standard law or procedure.

Sexual orientation: Whether one is attracted to people of the opposite sex, same sex, or both sexes.

Axiom: A saying widely accepted as truth, even without proof.

AIDSpeak: Special terms used when describing AIDS and its victims in an attempt to be less judgmental.

Subpoena: Gather by a legal order.

Ran into a brick wall: To run into a huge obstacle or reach a dead end.

Reagan administration: The government of Ronald Reagan (1911–2004), who served as U.S. president between 1980 and 1989.

Line the pockets: Make money; generate income.