Unless they get their hydroxychloroquine refills, lupus patients could experience flare-ups and may develop irreversible organ damage.
President Trump caused a firestorm on Monday when he announced he’s taking a malaria drug to protect against the coronavirus, despite an emerging scientific consensus that the drug is ineffective against COVID-19 and could cause potentially fatal side effects.
During a press conference, Trump told reporters that he has taken hydroxychloroquine and a zinc supplement daily for “about a week and a half now,” prompting many to speculate as to whether the president—who has lied thousands of times during his term—was telling the truth.
Beyond the obvious health risks of taking an unproven treatment lies another, potentially serious consequence of Trump’s announcement: an increase in demand for the drug, which could leave sick Americans without medication they need. In addition to treating malaria, hydroxychloroquine is also used to treat autoimmune disorders such as rheumatoid arthritis and lupus.
In the United States, 1.5 million people suffer from lupus, an inflammatory disease caused when the immune system attacks its own tissues. There is no cure for the disease, but studies have shown that hydroxychloroquine can drastically reduce the severity of the symptoms, which include fatigue, joint pain, rash, and fever. The drug can also prevent lupus flares and increase long-term survival of patients with the disease. Without it, however, lupus patients stand to endure more pain and suffering.
We know this because it’s already happened. Seizing on a few promising initial studies, Trump spent much of March and April pushing hydroxychloroquine as a potential treatment for COVID-19, despite a lack of conclusive evidence and warnings from his administration’s own medical experts that the drug was unproven and potentially dangerous. Trump’s efforts led to a run on the drug, as healthy Americans stocked up on the drug as a precaution.
This forced lupus patients to ration their supply of hydroxychloroquine as they struggled to get their prescriptions refilled. The American Society of Health-System Pharmacists confirmed shortages of hydroxychloroquine, and leading medical experts took to the pages of the Journal of the American Medical Association to warn of the dangers such a shortage presents to lupus patients.
“Without their hydroxychloroquine refills, many will experience flare-ups and may develop irreversible organ damage,” the doctors wrote.
Lupus patients sounded the alarms, too, explaining that without the drug, they could die. Sarah Capdeville, a writer living in Missoula, Montana, shared what not having hydroxychloroquine would mean for her in a Great Falls Tribune piece.
“I’ve spent eight months building a low dose up in my system, training my immune system not to attack itself. Even in the best of circumstances, which so many facing chronic illnesses don’t have, I’m still in a precarious and terrifying position,” she wrote. “If I’m forced to stop taking [hydroxychloroquine], my lupus could progress into a dangerous flare, damaging my vital organs. I could take an immunosuppressant to mitigate this harm, but doing so could be deadly in the face of a coronavirus infection.”
The demand for the drug became so high that 30 states put restrictions on who can be prescribed the hydroxychloroquine or how much of the drug can be prescribed.
Still, the shortage persisted. In a series of tweets, Peter Morley, a lupus patient and healthcare advocate, said on Monday that he had to ration his drugs and fight for two months before he got his refill, an ordeal that triggered a lupus flare.
“I’m in a Lupus flare because I’ve been fighting so hard to obtain #Hydroxychloroquine,” Morley said. “I’m NOT the only one there are so many people in the United States that are suffering. Stress is the worst possible trigger for this disease. The fatigue ravages your body, it’s unforgiving.”
Other lupus patients, like Lisa Braun Dubbels, the president of Catalyst Publicity, showed the visual consequences of going without the proper dose of hydroxychloroquine.
Demand for the drug has declined in recent weeks, likely due to the results of multiple studies showing the drug is ineffective in treating COVID-19, can have dangerous side effects such as heart rhythm problems, and could even increase the likelihood of death among coronavirus patients. The U.S. Food and Drug Administration also issued a warning last month against using the drug unless they are in a hospital or participating in a formal clinical trial.
Still, concern remains about the drug’s availability to lupus patients. Dr. Janet Woodcock, director of the FDA’s Center for Drug Evaluation and Research, tweeted on Monday, prior to Trump’s press conference: “In the US, hydroxychloroquine is used extensively and particularly for people with lupus, rheumatoid arthritis and other autoimmune diseases. It’s a necessary drug for them and not having access would have terrible consequences.”
Others, including Trump’s former secretary of Veterans Affairs, David Shulkin, expressed concern that the president’s announcement could once again lead the public to take hydroxychloroquine, despite its dangers.
“What people decide with their personal doctor is one thing. But going public like this I worry others will be influenced,” Shulkin tweeted on Monday.
Morley also warned against taking the drug without a doctor’s supervision and emphasized what’s at stake for him and others who rely on hydroxychloroquine to survive.
“People like me: MILLIONS of Americans w/auto-immune DEPEND on this medication,” Morley said. “What will happen to US, if there are continued shortages? I spent 2 months trying to refill it. Why are we NOT being considered?”
May is Lupus Awareness Month. To learn more about Lupus, please visit the Lupus Foundation of America’s website.