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Why Lupus Patients Find Hydroxychloroquine In Short Supply


Health officials are evaluating a drug as a possible treatment for COVID-19. It's called hydroxychloroquine, and it's something President Trump has referenced a lot. But there is a dangerous consequence to this because patients who have long relied on the medicine for other conditions are having a hard time finding it. Will Stone reports.

WILL STONE, BYLINE: For more than 20 years, Bonita Gray (ph) has used this drug, brand name Plaquenil, to treat her autoimmune disease, lupus. Gray, who lives in Scottsdale, Ariz., never had any trouble getting her prescription filled until the first week of March.

BONITA GRAY: When I went to the pharmacy this time to get my medication and was told it was back ordered for two months, it really hit me hard.

STONE: In the U.S., hydroxychloroquine is often used to help control symptoms in lupus and rheumatoid arthritis. There are an estimated 1.5 million Americans with some form of lupus. Gray, who's 65, was upset when she couldn't refill her prescription. She was a little afraid but not entirely surprised given the recent hype about the drug's possible potential to treat coronavirus. President Trump has called the drug a game-changer even though the few studies so far are preliminary and more research is needed.

GRAY: Soon as I heard the stories about this drug possibly being a cure or a magic bullet, I knew that everyone was going to want to put their hands on it.

STONE: Pretty soon, Gray took her very last dose. She called around to other pharmacies but couldn't find it anywhere.

GRAY: I was trying not to pay too much attention to it. But eventually, I became symptomatic with the lupus.

STONE: Without hydroxychloroquine, her joint pain started to get worse, and other symptoms emerged.

GRAY: It was attacking my mucous membranes. My nose and my mouth were - I would get blister-like sores.

STONE: One, two, nearly three weeks went by. The nurse practitioner who helps Gray manage her lupus was getting increasingly concerned. Finally, after spending an entire day on the phone, the nurse was able to find a one-month supply of the drug.

GRAY: But that's all for now, you know. So I'm faced with, next month, trying to find out how I'm going to do this again.

STONE: Demand for hydroxychloroquine has gone up exponentially, and other patients have reported problems finding it. Pharmacy boards in some states have issued advisories, cautioning pharmacists to be on the lookout for doctors trying to buy up large amounts of hydroxychloroquine.

At the University of Washington, Dr. Ruanne Barnabas is studying hydroxychloroquine's potential for coronavirus. She says anybody who is buying this drug that doesn't need it now is misguided.

RUANNE BARNABAS: We really have no data for - no evidence to support going out and buying the medication and using it.

STONE: But Barnabas says the limited data so far are encouraging. Her clinical trial is going to test the drug in people. She wants to enroll 2,000 people who will receive the drug after they've been exposed to the virus to see if it will protect them from getting sick.

BARNABAS: We need to conduct these rigorous studies to figure out whether it works to prevent COVID-19.

STONE: But until they have proven results, she says, hydroxychloroquine should first go to the patients who we know it works for, people like Bonita Gray.

Back in Scottsdale, Gray is calling pharmacies to figure out her options when her emergency supply runs out - again. She knows people are scared and stockpiling the medicine.

GRAY: I would say, please don't do that. It just is not good for the people who need it.

STONE: She hopes they listen.

For NPR News, I'm Will Stone in Seattle. Transcript provided by NPR, Copyright NPR.

Will Stone
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