A drug championed by President Donald Trump as a coronavirus panacea appears to be in short supply for people who really need it: lupus patients.
More than one-third of U.S. lupus patients who take hydroxychloroquine have struggled to fill prescriptions for the drug during the COVID-19 crisis, a new survey finds.
One patient finally filled her prescription after three weeks of calling different pharmacies. Yet another said her physician advised halving her regular dose until there was no longer a supply shortage.
Shortages of hydroxychloroquine occurred in March and April after media reports — and the president — suggested the drug may help prevent or treat COVID-19. Trump has since said he took the drug himself as a preventive measure even though the U.S. Food and Drug Administration warned it could cause serious heart problems for coronavirus patients.
Lupus is a chronic autoimmune disorder that produces joint pain, swelling, fatigue and other symptoms. It’s critical for lupus patients to stay on hydroxychloroquine to prevent disease flares that may make them more susceptible to infections.
The survey by the Lupus Research Alliance included 334 lupus patients in 42 states, Washington, D.C., and Puerto Rico who’d been taking hydroxychloroquine (brand name: Plaquenil) for an average of 11.4 years.
The poll was conducted from March 1 through May 18. According to the preliminary findings, 31% of respondents had difficulty getting refills of hydroxychloroquine, and 5% couldn’t refill their prescriptions.
Of those who had difficulty with refills or couldn’t get them, one-third split doses, and 9% ran out of the drug completely. About two-thirds had enough for a full dose.
Of the 72 patients who eventually obtained a refill, 36% couldn’t get it from their regular pharmacy, and 58% said it took two or more weeks to get their refill.
“I tried to refill my prescription, but they said I can only have two weeks’ worth. So I’m taking what’s left of that allotment and will try again to refill,” one patient noted.
“The survey results offer real-world data about the access of lupus patients to hydroxychloroquine,” said Teodora Staeva, chief scientific officer of Lupus Research Alliance.
“While we are encouraged by the results, the Lupus Research Alliance will continue to monitor the situation closely,” she said in a news release from the group. “We still recommend that people with lupus speak with their health care providers about a contingency plan should any shortages arise in the future.”
The Lupus Foundation of America has more on lupus.