At the LGBTQ senior community where John James lives in Philadelphia, residents keep busy with trips to the garden or—before the pandemic—screenings of Strangers on a Train in the rec room. James does not care for any of that right now. Each morning, he combs through medical-research databases and downloads every paper he can find on COVID-19 treatments, scribbling notes about the parts that stand out. Most days, he reads papers at his desk until 1 a.m. Besides research, “there’s not much else I do in the day,” he told me. “I’m 79. I’m retired. I want to do things that are serious.”
All of his work is in service of a website he recently launched, called COVIDSalon: Treatment Options. He updates it nearly every day, tracking the highest-profile and most promising COVID-19 drugs. It’s an old-school, text-heavy site, with reporting about drug trials, links to outside resources, and overviews of medications in the news all stacked onto a single page.
Few people understand the value of tracking treatments better than James. In 1986, when gay men across the country were dying from AIDS and were desperate for guidance, James began publishing updates on experimental-drug trials in a newsletter he called AIDS Treatment News, or ATN. James is not a doctor, and he is not HIV-positive, but during his time working as a computer programmer at the National Institutes of Health in the early 1960s, he learned to read medical research and interpret statistics. Despite operating on a tiny budget, ATN became one of the primary news sources for the queer community. In 1991, The New York Times noted that ATN was the newsletter “most frequently cited” by doctors and people with AIDS alike as their main source for drug news. Congress even referenced the newsletter in a report on AIDS therapies.
With the coronavirus pandemic, James sees treatments slipping under the radar once again. While the federal government poured $18.5 billion into vaccine research, only about $8.2 billion went to treatments. One drug that has gotten a lot of attention, hydroxychloroquine, has largely proved to be a dud. Even though half of all American adults have received at least one vaccine dose, research on COVID-19 treatments remains vital; tens of thousands of Americans are still hospitalized with the coronavirus, and better treatments might help them. Meanwhile, for COVID-19 long-haulers dealing with lingering effects of the virus, treatments may offer the best hope of a return to normalcy. With COVIDSalon, James is leaning into a notion that he and other veterans of the AIDS epidemic helped trailblaze in the ’80s: Patients can become experts on their own disease, and that starts with supplying them with the right information.
When James launched ATN, the situation was dire. In 1985, 8,406 Americans died of AIDS, nearly doubling the number of deaths from the year before. But few drug trials for AIDS were under way, and those that were rarely received mainstream coverage. Because doctors didn’t know how to treat the new disease, people with AIDS needed to research their own symptoms and, sometimes, plot their own course of care. Activist groups such as ACT UP “really promoted the idea of Let’s get this [treatment] information out there,” says Patricia Siplon, an AIDS activist and a political-science professor at Saint Michael’s College, but few people had the time or the ability, before the internet, to do the research. With the queer community left in the dark about how to address the epidemic, James started accessing a dial-up computer database that hosted new treatment research as well as reports from the FDA and drug companies. Every two weeks, he would condense his findings into a two-page newsletter.
After his newsletter started getting traction, James turned his San Francisco apartment into a makeshift newsroom. He and an assistant made copies a few blocks away, and mailed them out to subscribers one by one. Volunteers edited, fact-checked, and produced the newsletter at all hours. “When I needed to get to sleep at night, if they were still working, I would put a piece of cardboard over my face to block the light,” James said. He broke major news stories, including one about a steroid hormone, and directed people with AIDS to research trials, in which they could enroll and access experimental drugs.
ATN became the go-to source for lots of people looking for treatment news: By the early 1990s, the newsletter had amassed more than 7,500 subscribers, including both people with AIDS and medical professionals, powered by a staff of five plus James. Even after the highly effective “AIDS cocktail” arrived in 1996, James turned his focus to the steep cost of the available drugs before finally shutting down the newsletter in the summer of 2007 to work on other research.
Compared with treatment research at the height of the AIDS crisis, the state of COVID-19 treatment research looks very different. “It’s like comparing a drought to an avalanche,” James said. Much of the medical community has swerved to battle the pandemic, and doctors are testing more drugs on a faster timeline than ever before, says David Fajgenbaum, a doctor at the University of Pennsylvania who runs the CORONA Project, a database that catalogs COVID-19 drug trials. He told me that more than 400 different drugs have been given to patients, but only a small number of treatments, such as dexamethasone, have shown consistent signs of effectiveness against COVID-19. Most of the other treatments haven’t had the funds for extensive trials, and without proper research, some drugs run the risk of getting overhyped based on limited information. “The early bets financially were made on investing in vaccine trials and investing in monoclonal antibodies,” Fajgenbaum said. “What received relatively less funding and attention were drugs that were already FDA-approved that could be repurposed for COVID.”
With so few treatments available to patients, James felt an obligation to explain where the research on those hundreds of other drugs stands. Just like ATN, COVIDSalon is focused on explaining treatment news for a general audience and helping sick people enroll in research trials if they want to. But it’s not quite a redux of ATN. People no longer have to wait for James’s twice-monthly newsletter to arrive in their mailbox to find out what trials are under way; they can just Google them. Instead, his goal with COVIDSalon is to provide a dedicated hub of treatment information so people don’t have to sift through a barrage of old articles.
At the top of the site, James rounds up news stories about the state of treatments and peppers them with his own annotations. Below that, he gets into the repurposed drugs currently generating the most attention in medical journals. The obsessive-compulsive-disorder drug fluvoxamine “needs urgent attention from experts and the public,” James wrote in one update. One small trial in February found that 65 COVID-19 patients who took fluvoxamine did not experience any symptoms two weeks later. He has also mentioned inhaled budesonide, an asthma treatment, as another drug with early evidence of success against COVID-19. Many of the drugs that he has made a centerpiece of his site already have the attention of doctors such as Fajgenbaum, who said that both fluvoxamine and inhaled budesonide “look highly promising,” specifically for newly diagnosed patients.
A large segment of COVIDSalon aims to help COVID long-haulers. At the moment, only a small number of trials are focusing on long-haulers, Fajgenbaum told me. James also highlights drugs like fluvoxamine that have alleviated long-term symptoms in a test of COVID-19 patients, plus others such as the nutritional supplement GlyNAC, which he suggests is worth watching but is still in very early-stage trials. The way that long-haulers have organized throughout the pandemic—discussing their symptoms in Facebook and Slack groups, and pushing medical professionals to pay attention to their ailments—echoes the patient advocacy that James helped popularize during the AIDS epidemic. Through publications such as ATN, many people with AIDS knew as much about the latest niche medical findings as licensed doctors did. “I think that’s the same with the long-haulers,” Siplon says, although she notes that the barriers they face are not entirely the same as the ones that people with AIDS dealt with in the ’80s. “Everyone is learning about the long-term consequences of this in real time.”
COVID long-haulers are not waiting for scientists to come to them; they’re starting their own research groups, such as the Patient-Led Research Collaborative, which crowdsources people’s symptoms and experiences. James no longer has the influence that he once did; indeed, many long-haulers likely haven’t heard of ATN or even COVIDSalon. But the idea that people can become experts on their own disease runs deep in the work of long-haulers. The need for COVID-19 patient advocacy might become even more important as Americans get vaccinated and look to put the pandemic behind them. So, even when much of the country gets its first glimpses at normalcy, James said he’ll keep to his schedule of reading up on the latest treatment research. Though once it’s safe to, he’ll take just a few breaks to watch Strangers on a Train when it’s playing in the rec room.