Lupus Patient Fears Greater Shortages Of Hydroxycholoroquine

Lupus patient Stacie Beland watched closely Monday night as President Trump announced that he was taking hydroxychloroquine as a preventive treatment for COVID-19.

There are no studies showing that the drug is effective in treating or preventing the coronavirus, but 1.5 million lupus patients depend on hydroxychloroquine, which is also known by its brand name, Plaquenil. And since March, the drug has been difficult to come by.

Hydroxychloroquine is a prescription drug that is clinically proven to minimize lupus flare-ups and keep patients out of the hospital, Beland says. Lupus is an autoimmune disease in which the immune system attacks its own tissues and organs. When patients experience a flare-up, they suffer from fatigue, joint pain, rash and fever.

“Lupus is a disease where increased stress aggravates your symptoms, and simply the stress of not having access to this medication increases stress,” Beland says.

Orders for hydroxychloroquine spiked by 260% in the first two weeks of March compared to typical demand, according to medical consulting and data firm Premier Inc. The demand for chloroquine, another prescription drug that is similarly prescribed to treat lupus, spiked 3,000%.

Some are blaming the shortage on President Trump’s continued praise of the drugs for treating or preventing COVID-19.

“I spoke with my doctor and she said that there was a blanket letter that said it was now being redirected to patients with COVID-19 instead of patients with lupus, and that I would not be able to access it,” Beland says. “I actually resorted to a friend that had a leftover supply, but certainly that's not the way health care should work.”

Beland has since run out of that supply, and she says she is still experiencing a flare-up that is now going untreated. The last time she had a severe flare-up in January, she was admitted to the hospital for a week and a half.

“There have been many stories where people with severe to mild cases of lupus have not been able to access this medication and have ended up in ICUs taking up beds,” Beland says. “It's very, very dangerous for the president to say these things and for people to take the medication who don't need it and take that away from people who do.”

It’s important for lupus patients to receive treatment especially now because people with autoimmune diseases are at higher risk for contracting a severe case of COVID-19, Beland says. On top of her illness, Beland is also an essential frontline worker in a home for mentally disabled young women.

“I worry about the ladies that I care for. I worry about my stepdaughters, and I worry about going to the hospital,” she says. “If I had my medication, I would feel much better. I would be more healthy, and there wouldn't be that much of an exposure risk.”

Studies show that hydroxychloroquine has no benefit for COVID-19 patients and in some cases caused dangerous side effects. Currently, there are no studies showing whether the drug works for prevention.

Without clinical proof that the drug works for the coronavirus, Beland says Trump is playing a “dangerous game” by endorsing it.

“The initial studies showed that it actually didn't help,” she says. “And playing the game with people who regularly take this medication so that they don't end up in the hospital is extraordinarily hard to believe.”

Karyn Miller-Medzon produced and edited this interview for broadcast with Tinku Ray. Samantha Raphelson adapted it for the web.