Patients who rely on a prescription drug that dramatically improves their lupus and arthritis tell investigative reporter Hank Phillippi Ryan they’re worried about a shortage of their medication as researchers scramble to see if the drug might also help people battling COVID-19.
Horrible rashes, severe inflammation, and terrible pain. That’s what Lupus patient Pam from Seekonk says happens if she can’t take her prescription medication Hydroxychloroquine.
“How much do you rely on that?” Hank asked.
“I rely on it completely,” Pam said.
Pam watched President Trump put her life-saving drug in the COVID spotlight, when he mentioned researchers are trying to see if the medication might help fight the virus.
“If it works that would be great,” President Donald Trump said.
Pam worries about her next refill of her prescription brand called Plaquenil.
“I called probably close to seven pharmacies in my area, and all of them told me they no longer had Plaquenil in stock because there was this shortage taking place,” Pam said.
She says other lupus patients have told her the same terrifying thing:
“People have had to be on a waitlist, on backorder, waiting for the stock to replenish,” Pam said.
Hydroxychloroquine, manufactured by nine pharmaceutical companies is approved by FDA only to treat: Lupus, malaria, and rheumatoid arthritis. Doctors say for those patients–it prevents devastating symptoms.
“Very very important, critically important,” said Rheumatologist Lisa Fitzgerald, M.D.
Some experts worry doctors are stockpiling the drug. And Dr. Fitzgerald says, she’s now hearing of inappropriate prescribing by physicians whose patients would have no use for the drug.
“Typically its only dermatologists and rheumatologists that prescribe this med, because dermatologists also deal with patients with rashes of lupus. So prescribing beyond those two specialties is not the norm and nationwide there was prescribing inappropriately in this way for patients. I think that’s wrong. Absolutely.” Dr. Fitzgerald said.
Pam says it’s a difficult situation, balancing her own health and hoping the drug could help others.
“If it is, in fact, helping people with this virus and saving lives you want to help those people you want to save lives. At the same time, you rely on this basically to live also,” Pam said.
One pharmaceutical company we spoke with says they are now ramping up production of the drug. Again, this drug has not been approved for use against COVID.
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