For decades, millions of Americans with systemic lupus erythematosus and rheumatoid arthritis have taken hydroxychloroquine, an antimalarial drug that has proven successful at providing relief for these challenging conditions. But suddenly, people are struggling to fill their prescriptions.
Patients are calling their doctors, clamoring for information on which pharmacies might still have the medication in stock. “We’ve had many messages,” says Erika Noss, M.D., a rheumatologist at the University of Washington Medical Center. “People are looking ahead, counting the number of pills, and realizing they’re going to be due for a refill, and not sure if they’re going to be able to get it.”
The recent shortage has been spurred by reports that hydroxychloroquine, and its predecessor chloroquine, could be used to treat COVID-19. The drugs’ recent fame came from a small study of coronavirus patients in France, published on March 17, showing promising results for patients treated with hydroxychloroquine. Days later, President Trump promoted the treatment as a “game changer” in press conferences and online.
In perhaps an indication of these fear-filled times, the following week the drugs gained further notoriety after a couple from Arizona self-medicated with a fish-tank product containing chloroquine, and the man died from heart failure caused by the overdose.
Research into the effectiveness of using hydroxychloroquine and chloroquine to treat the new coronavirus is still preliminary, and results are mixed. Since its publication, the French study has come under intense scrutiny for methodological shortcomings. Meanwhile another clinical trial of 30 COVID-19 patients in China, published in early March, showed no difference between outcomes for patients who received hydroxychloroquine and those who didn’t. An even more recent publication, also from China, raised the possibility that hydroxychloroquine might help treat mild cases of the new coronavirus, but experts caution it’s still too early to gauge the drug’s effectiveness.
Whether or not it works for treating COVID-19, the more immediate issue is the apparent hoarding and stockpiling of the drug by some doctors, consumers, and medical practices in the past several weeks, actions that prompted a joint statement by the American Medical Association, American Pharmacists Association, and America Society of Health-System Pharmacists demanding that prescriptions only be written and dispensed for “legitimate medical purposes.”
Hydroxychloroquine for Chronic Diseases
The problem of a shortfall is that hydroxychloroquine is a vital, proven treatment for the vast majority of the 1.5 million people in the U.S. with lupus, and often is a component of drug therapy for rheumatoid arthritis patients.
“It’s the only medication for lupus that has been shown to reduce mortality,” says David Karp, M.D., Ph.D., president-elect of the American College of Rheumatology and chief of the division of rheumatic diseases at the University of Texas Southwestern Medical Center. Hydroxychloroquine has also been found to limit flares and prevent organ damage for people with lupus, and is considered an essential part of therapy, according to the American College of Rheumatology.
In the past, Dr. Karp has seen lupus patients suffer severe disease flares after losing their insurance and access to hydroxychloroquine. “There’s no reason to expect the same thing wouldn’t happen here,” he says. In fact, clinical trials have shown patients who discontinue hydroxychloroquine are at more than twice the risk of a flare and can show symptoms as early as two weeks after coming off the medication.
In particular, pregnant lupus patients are at risk if they lose access to hydroxychloroquine. “Having a flare is bad for the mom and baby,” says Dr. Noss. “Those are the patients I would be most worried about.”
Hang On, Don’t Panic
If you’re concerned about refilling your prescriptions, there is a small peace of mind in knowing that some lupus patients don’t start to experience problems until months after discontinuing hydroxychloroquine (although it varies from person to person). “The first thing I’ve been telling people is not to panic,” says Dr. Noss. “This is a short-term blip.”
Drug companies are aware of the shortage, and Mylan and Teva Pharmaceuticals have pledged to ramp up production of hydroxychloroquine. In the meantime, many pharmacies are only filling prescriptions for their established patients and dispensing limited amounts of the drug to ensure supplies last during this crunch time. “Pharmacists are doing some heroic work,” Dr. Noss says.
If you have lupus or rheumatoid arthritis and are worried about access to hydroxychloroquine, first consult your doctor. Some providers may consider lowering doses or extending supply for some of their patients, “but that’s on a case by case basis,” Dr. Noss emphasizes. What your doctor will likely know is which pharmacies have hydroxychloroquine in stock, and they can come up with alternative treatments if none is available. In addition, for rheumatoid arthritis patients, doctors can often compensate for missing hydroxychloroquine by adjusting the dosage of other medication.
Bottom line: Yes, there is a squeeze going on right now if you take hydroxychloroquine. But it should be temporary and there are ways to work around it, in the short term. It’s going to be okay.