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National HIV Testing Day and the history of HIV testing

By Richard Giannone

National HIV Testing Day brings the past alive into the present. It was not until 2 March 1985 that the FDA approved the first antibody-screening test for use in donated blood and plasma. The test came three years after Luc Montagnier at the Pasteur Institute in Paris identified the suspect virus in 1983. Later that year Anthony Gallo at the National Cancer Institute in Washington cultivated the virus for further investigation and human testing. HIV testing arose in a culture of fear. The history of the test’s accuracy and efficiency is a story of dread.

No doubt about it, testing is crucial to protect and treat HIV. There is no free lunch. These benefits come at a great price. As a 77-year-old gay man who lived through the early crisis, I recall the shock surrounding early testing. A positive finding then came as a death sentence. Before death, there was the prolonged trial of dying, dying of a disease that added shame to affliction. Anxiety darkened every aspect of gay life. Anxiety is future-oriented. Young gay men, fit and talented, saw life through the lens of annihilation. We lived, as Paul Monette’s 1998 memoir expressed it, on Borrowed Time. A drop of blood in a tube could bring news of premature end. With their lives still before them, young men could no longer imagine a future. One measureless modern catastrophe was wiping out all youth and accolades, and almost the era itself.

Stigma and criminalization accompanied a positive result. It was illegal not to tell a partner that one was HIV positive. One wouldn’t be hired or, if employed, could lose the job. Predatory insurance companies hovered to profit from people with AIDS by buying out their life insurance at a small percentage of its value. Testing was private, but how anonymous was anonymous testing? How confidential was confidential testing? Heartache deepened the culture of fear into suspicion of people and science.

Many questioned (not unwisely) the test’s accuracy. The test went through stages to check for a false positive. There was the Western blot assay that added time to the final results. The test felt like a trap. Some men were so emotionally paralyzed that they believed they were HIV-negative. One false positive could send a person into terminal self-doubt. A false positive caused one friend to retake the test to ease anxiety so many times that his physician refused to do it for several months. Moreover, one had to wait up to six weeks for verified results. Waiting was part of the torment. As a result, there was a run on the New York Blood Center from gay men saying that they wanted to donate blood because they knew that the Blood Center got very quick results. Some sexually active gay men refused to take the test because there was neither treatment nor cure. AZT, the first line of treatment, wasn’t available until 1987.

Little by little, people came through. At the Gay and Lesbian Center on West 13 Street in New York, a nurse named Denise was there to help those too scared, too closeted, to trust official services. She had a legal way to get results, and get them quickly. The test was given on “the-need-to-know basis.” Denise’s professional concern was like a pebble dropped in water that rippled out with compassion. When she gave results, she wasn’t shy about receiving kisses from those who received the news, good or bad. This woman wasn’t afraid of tenderness. She told me how men broke down over getting a negative result. Yes and survival were hard to take. Also, she saw the courage of those who knew the bad news was coming. Denise was at hand. So was relentless anxiety, which to this day gnaws at my memory with the bite of a pit bull that won’t let go.

HIV testing now is routine, trustworthy, and rapid. They now test for genetic material through nucleic acid, but those scientific details are beside the point. Scientific numbers are impressive but soulless. Knowledge counts. There are take-home kits for the shy. A mouth swab will do it. Denise is now everywhere. The news is out. Free packages of condoms are all over the place bring with them a message from, say, from the Lower East Side Harm Reduction Center on Allen Street. “HIV Testing Needle Exchange & Drop-In.” Stop by. The visit may lessen the fear, may reduce the anxiety. And better treatments are readily available.

Richard Giannone, emeritus professor at Fordham University, is the author of Hidden: Reflections on Gay Life, AIDS, and Spiritual Desire.

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  1. […] of Hidden: Reflections on Gay Life, AIDS, and Spiritual Desire. Read his previous blog posts: “National HIV Testing Day and the history of HIV testing” and “The anxiety of AIDS […]

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