Christian sat near Timothy in Jessen’s crowded waiting room. The two men, the Berlin patients, were scheduled to see Jessen that afternoon. Each was unaware of the other’s significance to medical history. It was 1996, long before Timothy’s cancer diagnosis. They had been diagnosed with HIV only a short while ago. They were close in age, had a similar build, and shared personality traits: reserved, a touch sensitive. They didn’t even know each other’s names. They sat in the waiting room, like many other patients, studiously avoiding eye contact.
It had been three years since Jessen had treated his boyfriend, Andrew, with hydroxyurea. Yet, the drug remained a mystery; there was only anecdotal evidence that the cancer drug was an effective therapy for HIV. Jessen’s limited experience with the drug was positive. Andrew had, thus far, survived. Returning from their sojourn to the northern islands of Germany, his viral load had lowered, and his T cells increased: encouraging evidence that the “intervention” had been a success. However, AZT was able to lower virus and increase T cells in the short term, before the virus mutated around it. The real test for Andrew’s intervention would be its ability to keep him alive in the long term. Andrew and Jessen’s relationship, however, would not last long-term. Returning to Berlin, Andrew had broken up with Jessen, stopped the radical therapy prescribed by him, and left Germany for Spain. He bounces around the world today still healthy and frequently dating doctors. We’ll never know what effect the novel drug has had on his survival. Jessen was, and in some ways still is, heartbroken.
Nevertheless, Jessen believed in the hydroxyurea, openly prescribing it to a select group of patients. It wasn’t a large clinical trial. Instead, it was a small trial, the kind that still occasionally happens in family doctors’ offices. Part of the reason the trial was small was because patients had to be carefully selected for it. They had to be recently infected and very responsible. It was a drug that had to be taken at specified times every day. Jessen also had to do significant follow-up work on patients and needed to be sure the patients would show up to appointments. It was advantageous for him to have a relationship with anyone taking the drug. Jessen was interested in how the drug could be combined with the “hit hard, hit early” strategy touted by David Ho and others, to beat down the virus, eradicating it from the body. There were still no large-scale clinical trials of hydroxyurea, but the strategy intuitively made sense to him. He would use the powerful drug to control the virus at the earliest opportunity, before it had a chance to entrench itself in the body.
When Jessen prescribed Christian hydroxyurea, he did it carefully. Christian had been diagnosed very early in infection. He was a responsible student. He had been coming to Jessen for a year as his family doctor. Jessen felt he could trust him. Christian, for his part, didn’t think anything of the experimental drug. He didn’t think to question it. He wasn’t particularly interested in the science behind it. All he knew was that he had a potentially fatal disease and he needed to take medicine. He dreamed of being “the exception to the rule.” That somehow this experimental combination would work and he could actually be the first person cured.
When Timothy first saw Jessen, he had harbored HIV far longer than Christian. He had been infected nearly a year earlier and hadn’t known it. Because the early symptoms are similar to the flu, this happens frequently; a recent study found that 44 percent of HIV-positive gay men in the United States don’t know they’re infected. Jessen didn’t think to prescribe hydroxyurea to Timothy. After all, what were the chances that you could clear out the virus when it already had a foothold in the body? Timothy got a very different regimen of antiviral drugs and went on his way. He wasn’t unhappy with the medicine, but he was displeased with Jessen’s warm and fuzzy personality.
Jessen’s hydroxyurea trial, given outside the typical context of a structured clinical trial administered by a hospital, was radical. Once HIV was no longer considered a death sentence, HIV clinical trials changed. Similar to how, if you’re dying of thirst, you’ll drink almost anything, even your own urine, early HIV trials were desperate affairs. Today, HIV patients in the States and in Western Europe are no longer dying of thirst. They can afford to be picky about what treatments they take and what clinical trials they participate in. Nowadays, HIV clinical trials typically involve busy infectious disease specialists who have to keep all their treatment participants on identical structured regimens to maximize the statistical power of the clinical trial. Jessen pursues a very different approach to medicine, one that puts the focus on the patient rather than the medicine.
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As Christian took the hydroxyurea, he imagined a toilet bowl commercial that was shown on TV when he was a kid in the 1970s. In the commercial, a large bowl of blue water is shown in the foreground. A tablet of toilet bowl cleaner, like a giant pill, is dropped into the blue bowl. Like magic, the blue water becomes sparklingly clear.
As he took his hydroxyurea every morning, he visualized the commercial. He imagined the drug acting like the toilet bowl cleaner. He dropped it in his body and, like magic, it cleaned him of the virus. The visualizations were a comfort to him. He believed not just in the science, perhaps not even mostly in the science. He believed in the spiritual act of taking his medicine—letting both the drug and his good thoughts scrub his body clean of HIV.