A prolonged shortfall in supplies would likely have grave implications for people who depend on it — including Powers, who believes that she would not be alive today without the drug. “I guarantee you, it has saved my life,” she said. “It’s the only thing that’s protecting my organs. There’s nothing else.” Like others, she hopes that pharmaceutical companies that manufacture versions of the drug will be able to quickly ramp up production — something several have already promised to do . In the meantime, Powers has a message for the American public — one echoed by most lupus doctors: When it comes to hydroxychloroquine: “If you don’t need it, don’t get it.”
The origins of hydroxychloroquine can be traced back hundreds of years to South America, where the bark of the cinchona tree appears to have been used by Andean populations to treat shivering. European missionaries eventually brought the bark to Europe, where it was used to treat malaria. In 1820, French researchers isolated the substance in the bark responsible for its beneficial effects. They named it “quinine.” When the supply from South America began to dry up, the British and Dutch decided to grow the tree on plantations.
Over time, synthetic versions were developed, including a drug called chloroquine, which was created in the midst of World War II in an effort to spare overseas American troops from malaria. As it turned out, troops with rashes and arthritis saw an improvement in symptoms after using this anti-malarial medication. After the war, a related drug was created, one with fewer side-effects when taken long-term: hydroxychloroquine. It went on to be used to treat many types of autoimmune diseases, including rheumatoid arthritis and lupus. The latter, which disproportionately affects women , used to cut lives short — typically from failure of the kidneys. Those numbers have been reduced with strict management of the disease, but the Lupus Foundation of America estimates that 10 to 15 percent of patients die prematurely due to complications of the disease.
Jinoos Yazdany, a researcher and chief of the Division of Rheumatology at Zuckerberg San Francisco General Hospital, added that there is strong clinical trial data demonstrating that taking a group of lupus patients off of hydroxychloroquine results in lupus flares. “I am less concerned about a short interruption of a few weeks,” she said in an email message, “but anything longer than a month puts patients at risk.”
Whether or not that will happen is unclear, but Sparks said he has been receiving a raft queries from both lupus and non-lupus patients eager to know more about — and access — hydroxychloroquine: “Can I use this? Should I stockpile it? Can I get refills?” Sparks compares the current medication shortage to the ventilator shortage, where manufacturers make just enough of a certain supply to meet the demand. “We don’t have stockpiles of hydroxychloroquine sitting around,” he said.
Blazer understands that people are scared and says it’s natural that they would want to protect themselves. But she said, the medicine is a limited resource and should be reserved for people with a rheumatological disease or active Covid-19 infection. In order to minimize fallout from the pandemic, she says, “we all have to function as a community.”
As it turns out, there is an extreme paucity of data when it comes to hydroxychloroquine and Covid-19. On March 10, the Journal of Critical Care published online a systematic review of the safety and the effectiveness of hydroxychloroquine and chloroquine in treating Covid-19. The authors’ goal was to identify and summarize all available scientific evidence as of March 1 by searching scientific databases. They found six articles. (In contrast, a search of the database PubMed for hydroxychloroquine and lupus yields 1,654 results.)
“The articles themselves were kind of a menagerie of things that you don’t want to get data from,” said Michael Putman, a rheumatologist at Northwestern University, McGaw Medical Center, in his rheumatology podcast. The study authors found one narrative letter, one test tube study, one editorial, two national guidelines, and one expert consensus paper from China. Conspicuously missing were randomized controlled trials, which randomly assign human participants to an experimental group or a control group, with the experimental group receiving the treatment in question.
“It is kind of scary that that is all the data we had until March 1, for a drug that we are currently talking about rolling out en masse to the world,” said Putman.
Shortly after the systematic review appeared online, Didier Raoult announced the results of his team’s clinical trial. (The paper is now available online.) At first blush, the results are striking. Six days into the study, 70 percent of patients who received hydroxychloroquine were “virologically cured,” as evidenced from samples taken from the back of each patient’s nose. In contrast, just 12.5 percent of the control group, which did not receive the drug cocktail, were free of the virus.
A second potential issue: Patients who refused the treatment or had exclusion criteria served as controls. “It’s hard for me to describe just how problematic this is,” said Putman in his podcast. Ideally patients would be randomly assigned to one of the two treatment groups, said Putman. Patients with exclusion criteria — those unable to take the medication — are not the same as patients who are able to take it, he says. And the same is true for patients who refuse a drug vs. those who don’t.
Whether these and other potential problems with the research will prove salient in coming weeks and months is impossible to know — and most researchers concede that even amid lingering uncertainties, time is of the essence in the frantic hunt to find ways to slow the fast-moving Covid-19 pandemic. “A lot of this,” Kim said, “is the rush of trying to get something out.” On Friday, the University of Minnesota announced the launch of a 1,500-person trial aimed at further exploring the efficacy of hydroxychloroquine against SARS-CoV-2. And drug makers Novartis, Mylan, and Teva announced last week that they were fast-tracking production, with additional plans to donate hundreds of millions of tablets to hospitals around the country to help combat Covid-19 infections.
Still, reports of shortages are mounting. “It’s gone. It’s not in the pharmacy now,'' a physician in Queens told The Washington Post on Friday. The doctor admitted taking the drug himself in the hope of staving off infection, and that he’d prescribed it to 30 patients as a prophylactic.
These sorts of fast-multiplying, ad hoc transactions, are what worry lupus patients like Julie Powers. For now, she says she has enough hydroxychloroquine to last 90 days, and she added that her pharmacist in the Washington, D.C. area is currently hiding the medicine to be sure her regular lupus patients can get their prescriptions refilled.
Powers sounds almost amazed when she describes what that means to her: “I can walk outside,” she said, “and I can live.”
Sara Talpos is a senior editor at Undark and a freelance writer whose recent work has been published in Science, Mosaic, and the Kenyon Review’s special issue on science writing.
Disclosure: The author’s spouse is a rheumatologist at Michigan Medicine.
UPDATES: This story has been updated to clarify Alfred Kim's view on several patients who dropped out of a small French study on the efficacy of using hydroxychloroquine to treat Covid-19 cases. The piece was also edited to include information noting that one state pharmacy board is now taking steps to curtail prescriptions of hydroxychloroquine and chloroquine for Covid-19 prophylaxis.
This article was originally published on Undark. Read the original article .