It has been exactly 25 years since the identified beginning of the AIDS epidemic in the United States. Initially it was called GRID (Gay-Related Immune Deficiency), but the name morphed into Acquired Immune Deficiency Syndrome, the last stage of Human Immunodeficiency Virus Infection (HIV). Originally thought to be non-existent until 1981, research now shows that its development may have come for the harsh colonial practices in French Equatorial Africa of forced labor, unsafe injections and vaccinations with unsterilized needles, and the use of “bushmeat” for food during the beginning of the 20th century.
A false sense of morality kept conservatives from stopping the onslaught of the disease during Ronald Reagan’s reign because they thought that AIDS was limited to gay men despite the fact that half those infected were non-gay. As president, Ronald Reagan didn’t even use the term “AIDS” in public for almost five years in spite of the thousands of people dying from the disease, and he failed to give a speech on the epidemic for another two years. Federal laws even kept people with AIDS from being permitted to fly on commercial airplanes.
In the past 25 years, 650,000 people in the United States died of AIDS and hundreds of thousands more were stigmatized. More people might have died if AIDS activists had not taken to the streets to force research on drugs, awareness policies, and help from the government. A new book from David France, How to Survive a Plague, chronicles the pain, frustration, anger, and work from activists over the 15 years in which the government fought them from saving lives following his Oscar-nominated documentary film four years ago.
Andrew Sullivan writes in The New York Times:
“Here again are the manifestations of terror: the purple cancerous lesions of Kaposi’s sarcoma, fatal when they migrated to your lungs; toxoplasmosis — a brain disease that turned 20-somethings into end-stage Alzheimer’s patients; pneumocystis carinii, which flooded your lungs until you drowned; cytomegalovirus, which led to blindness, so that young men in AIDS wards were ‘hugging walls and scraping the air to find their nurses’; molluscum contagiosum, covering the body in ‘small, barnacle-like papules’ that oozed pus; peripheral neuropathy, with which a mere brush of a sheet against your skin felt like an electric shock; and cryptosporidiosis, a parasite that took over people’s gastrointestinal tract, slowly starving them to death. It’s been over a decade since those Latin nouns were household words in gay life, and reading them still traumatizes.”
The brave activists fought for help, and the fight extended survival time from 18 months to 22 months after a long nine years. Deaths geometrically increased as drugs failed and researchers refused to try new ones. Yet the gay men stayed at the center of organizing drug trials and meeting with pharmaceutical executives after they made their point by taking over their offices.
Author France not only writes brilliantly but also exhaustively researches his subject. As a journalist, he was a part of the fight during these 15 years, first at the biweekly New York LGBT newspaper Native and later undercover at the New York Post where he was soon fired after the editor “found out you’re gay.”
Cynthia Carr writes:
“France’s book focuses on the science: the work of early caregiver-researchers like Dr. Joseph Sonnabend and his activist-patient Michael Callen; the search by AIDS patients for illegal—or even homemade—cures; the dithering at agencies like the National Institute of Allergy and Infectious Diseases (NIAID) that were supposedly studying treatments. Ultimately, center stage goes to the small group of activists who created the Treatment Action Group (TAG), an offshoot of ACT UP, and who managed to work their way inside the pharmaceutical industry. By 1996, fifteen years after the first reports of a “gay cancer,” antiretroviral drugs called protease inhibitors were allowing many patients to manage an HIV/AIDS infection. What becomes clear in How to Survive a Plague, above all, is that it needn’t have taken so long—to put it mildly.
“Unknown to any doctor or patient, at that point, scientists had already discovered the retrovirus that causes AIDS. Yes, early in 1983, at the Institut Pasteur in Paris. I’ve always found this to be one of the most shocking stories to emerge from the plague years, and France is not the first to tell it: how American scientist Dr. Robert Gallo tried to take the credit for this discovery after French scientist Dr. Luc Montagnier sent him samples of what would later be called HIV. Long story short, this delayed both meaningful research and the release of an antibody test.
“Then, when that first antibody test did become available, in 1985, most gay men refused to take it for fear that they would lose their jobs, their housing, and their health insurance. Most cities, including New York, had no gay-rights legislation in place. In fact, gay sex was still illegal in many states. That year, twenty state legislatures debated quarantining people with AIDS, while Republican congressman William Dannemeyer introduced a raft of homophobic legislation, including a bill that would give a long prison term to any gay person who tried to donate blood. There was simply no upside to taking the test. There were no treatments.”
“Say No to Drugs” was the mantra of the 1980s thanks to Nancy Reagan, and just owning syringes was illegal in many states. Other countries controlled the AIDS epidemic. The German government provided funding to gay community NGOs and invited them to develop their own prevention projects. Britain publicized the problem through a campaign of “AIDS: Don’t Die of Ignorance.” Western countries created needle-exchange programs, distributed free syringes, and developed opiate-substitution treatment. Germany had needle-vending machines, and England and Wales distributed 25 million free syringes each year by 1997. In the United States, however, where 40,000 people develop HIV annually, the ban on federal funding for needle exchanges remained until 2009 and then was replaced in 2011 after the Tea Party swept over Congress.
With the new Trump/Pence administration, HIV and AIDS cases could soar. People would lose their medications through the disappearance of the “pre-existing condition” of the Affordable Care Act (ACA). Southern states have had the highest rates of new HIV diagnoses but refused federal Medicaid funding which could provide HIV meds.
When Mike Pence became governor of Indiana, the state experienced its worst HIV outbreak in its history, worsened by Pence’s decision to maintain the state ban on needle exchanges and slash funding for HIV testing facilities. This is the same governor who just gave away $7 million of public taxes to keep 1,000 jobs at Carrier in the state. Pence also tried to defund Planned Parenthood, a key HIV test source. Blamed for the HIV outbreak, Pence prayed about the problem.
Pence campaigned for Congress in 2000 by promising he would take funding away from HIV/AIDS drug research to put into organizations that would prevent LGBT behavior. He wrote, “Resources should be directed toward those institutions which provide assistance to those seeking to change their sexual behavior.” His policy is to “cure the gay” and ignore HIV.
If Tom Price is confirmed for health secretary, he would control federal programs responsible for conducting HIV/AIDS research, education, treatment, and prevention. The Department of Health and Human Services oversees the National HIV/AIDS Strategy, which is tasked with developing policy to combat HIV nationally. Price is a member of the Association of American Physicians and Surgeons that questions whether HIV causes AIDS. He also wants to erase the ACA, slash Medicaid funding, and privatize Medicare.
When Ebola became a threat in the United States with a very few cases, President Obama took action and stopped it. The first observed case of AIDS in the United States was followed by 15 years of ignoring the issue or joking about it. The new administration, backed up by an ultra-conservative Congress, will most likely cause HIV diagnoses and AIDS deaths to soar.
Today is the 29th annual World Aids Day, always on December 1, dedicated to raising awareness of the disease caused by HIV. You can commemorate the day by reading How to Survive a Plague, because the election of Trump and Pence pretty much guarantees that the epidemic will return.