BIAS IN AMERICAN HEALTHCARE: THE AIDS CRISIS, AN EPIC TRAGEDY OF PREJUDICE

Who gets medical treatment in America and who doesn’t? Why is the U.S. healthcare system fundamentally biased?

While researching my biography, Candace Pert: Genius, Greed, and Madness in the World of Science, I was reminded of the epic tragedy of prejudice that led to the AIDS epidemic, as the United States government failed to act.

By 1985, when NIH officials finally started paying attention to gay men showing signs of exotic disease, a crisis had been escalating for five years. Centers for Disease Control (CDC) scientists had been monitoring an uptick in homosexual men suffering from symptoms like night sweats, fatigue, diarrhea, and swollen lymph nodes, as well as opportunistic infections as diverse as psoriasis, Kaposi’s sarcoma, pneumocystis carinii pneumonia, neuropathy, severe herpes and shingles, oral candidiasis (thrush), cryptococcal meningitis, toxoplasmosis, encephalitis, and Burkitt’s lymphoma. Fungal infections that generally appeared in birds, sheep, cats, and deer were now being discovered in humans, as were cancers that attacked every area of the body.

To understand and halt the spread of a disease characterized by complex and mysterious infections and immune disorders required the collaboration of immunologists, epidemiologists, venereologists, toxicologists, virologists, and psychologists or sociologists who could identify patients’ behavior patterns. Yet such cooperation was hard to come by in science.

Knowledge and treatment of AIDS (acquired immunodeficiency syndrome) were primitive then, with false reports that its underlying virus could be killed with peroxide and Clorox. In 1983, the American Medical Association had caused a firestorm by issuing a press release suggesting that routine everyday contact might cause transmission. Tony Fauci, the ambitious young director of the National Institute of Allergy and Infectious Diseases (NIAID), was quoted as saying, “We are witnessing at the present time the evolution of a new disease process of unknown etiology with a mortality of at least 50 percent and possibly as high as 75 percent to 100 percent with a doubling of the number of patients afflicted every six months. . . . The finding of AIDS in infants and children who are household contacts of patients with AIDS or persons with risks for AIDS has enormous implications with regard to ultimate transmissibility of this syndrome. If routine close contact can spread the disease, AIDS takes on an entirely new dimension.” Of course, these children had contracted AIDS in the womb or through blood transfusions, and Fauci blamed the media for taking his comments out of context. But by then the damage was done, with the public whipped into a frenzy of fear.

Making matters worse was a lack of adequate funding. As part of his presidential campaign, Ronald Reagan had promised to turn federal programs over to the states, which meant slashing budgets on federal health initiatives like the NIH. The administration refused to modify this policy, even in the face of a rapidly spreading epidemic that it claimed was its “number-one health priority.” With subsidies and grant money cut, scientists saw no fame or prestige in curing “gay cancer” and focused their efforts on diseases more easily solved with limited resources, prompting censure that NIH stood for “Not Interested in Homosexuals.”

This apathy stood in stark contrast to the nation’s attacks on other health threats. For instance, in 1976, when a group of straight, white, middle-aged men who were members of the American Legion fell ill while attending a convention at a Philadelphia hotel, the government snapped into action. The CDC and Pennsylvania Health Department responded with unprecedented alacrity, determining within six months that the source of the outbreak was a rare bacterium that caused a pneumonia-like lung infection. The 182 afflicted (29 of whom died), who had been exposed by breathing infected water droplets from the hotel’s air-conditioning unit, even had a malady named after them— Legionnaires’ disease. Similarly, when cyanide was discovered in Tylenol capsules in the Chicago area in 1982, more than a hundred federal, state, and local agents mobilized immediately, coordinating with the CDC and the Food and Drug Administration (FDA). The government spent millions of dollars to learn that, most likely, a single lunatic had tampered with packages and killed seven people. No expense was too great when the lives of certain groups of Americans were at stake, and yet thousands of homosexuals were being hung out to dry.

As noted in And the Band Played On, Randy Shilts’s defining account of the AIDS crisis’s early years, in 1982 the NIH spent $36,100 per death on toxic shock syndrome, the etiology of which had already been identified, and $34,841 per death on Legionnaires’ disease, compared to about $3,225 per AIDS death in 1981 and $8,991 in 1982. This meant that a gay man’s life was only one-quarter as valuable as that of a member of the American Legion.

Evidently, the nation was plagued by another epidemic— bigotry—so no one was putting pressure on public officials. Meanwhile, religious fundamentalists had been working since 1977 to deny gay marriage and repeal homosexual rights, such as anti-discrimination laws and gays’ ability to serve in the military, with Reverend Jerry Falwell and his Moral Majority leading the charge. “When you violate moral, health, and hygiene laws, you reap the whirlwind,” Falwell preached. “You cannot shake your fist in God’s face and get by with it.” Denouncing gays’ “perverted lifestyle,” he claimed that AIDS was God’s curse for repudiating “nature.” Likewise, Jesse Helms, a senator from North Carolina, lobbied Congress to pass laws banning HIV-positive individuals from immigrating to the United States and slashing CDC funding for HIV prevention messaging toward gay men.

As a result, AIDS, which had an average incubation period of five and a half years, was permitted to spread unabated for the better part of a decade. Only when the virus had infected heterosexual populations through intravenous drug use and blood transfusions did the media sound the alarm and the government step in to help.

By 1985, when the Department of Health and Human Services finally increased federal funding to fight the disease, the CDC estimated that hospital bills and lost wages and benefits for AIDS patients had already reached $5.6 billion and would soon rival the cost to society of cancer ($50 billion per year) and heart disease ($85 billion per year).

AIDS was a preventable tragedy, but bias in the American healthcare system enabled the spread of this deadly disease.