Last month, 71-year-old Suzanne Strieff tried to get a refill for the medicine she’s taken for the past several years for her rheumatoid arthritis.
“When I called to get it my pharmacist said, ‘Well I can send you a few but it could be weeks before I get the full amount,’” Strieff said. “No place had it. I also called Walgreen’s. Walgreen’s didn’t have it either. Nobody could get it.”
Strieff had worried this would happen, ever since she heard President Donald Trump touting hydroxychloroquine as a potential way to prevent or cure COVID-19.
It would be another three weeks before she would get her supply of the drug. By then, she’d run out and had to go without it, a situation which she said was “not pretty. I had a lot of pain. A lot of inflammatory pain in my legs and my hands. My hands I could hardly use.”
Strieff has three months’ worth of pills now, but she said she’s still not back to feeling as well as she did before her prescription was temporarily cut off.
It’s not just Strieff.
“I’m prescribing hydroxychloroquine as I’ve done for years. But I’m repeatedly being clogged with messages that patients are not able to find it,” said Dr. Meenakashi Jolly, who heads Rush University’s lupus clinic.
She said between 15 to 20 patients contact her daily, saying they can’t get the drug.
“This is one of the very crucial medicines for lupus patients. In fact, we say it is so beneficial it should be given to each and every patient with lupus,” she said.
With lupus, the “immune system doesn’t recognize cells as its own,” so it goes into overdrive and fights them, which causes inflammation. To treat it, doctors use medicine to “suppress” the immune system.
Jolly said hydroxychloroquine, a quinine that’s a variation of the anti-malaria drug chloroquine, has a benefit for patients with lupus.
“Patients on this live longer,” she said.
Jolly feels, and fears, for her patients who are having trouble accessing it.
Individuals with pre-existing medical conditions, like autoimmune disease, are already at a higher risk for COVID-19 and may have more severe cases if they do get it.
“They have all of those worries already and now we’ve complicated their lives by adding another worry by not having access to the medication. Or even if they have some access, worrying about what will happen next. Their lives are already very unpredictable and we’ve added another layer of unpredictability to their lives,” Jolly said.
Patients like Sertia Owens, a 51-year-old Chicago resident with lupus and rheumatoid arthritis, who in late March contracted the coronavirus.
She said she had no symptoms until suddenly one morning she had trouble breathing; she went to the hospital where was put on oxygen and tested for COVID-19.
At points it was unbearable.
“It was to the point where when you’re gasping for air and can’t breathe and you’re just feeling that you’re going to die,” she said.
Part of her coronavirus treatment?
Various studies internationally are researching the drug’s effectiveness relating to COVID-19, including a clinical trial the National Institutes of Health began on Thursday.
But at this point, Jolly said, the jury is still out on whether it works.
Regardless, now that Owens is out of the hospital and feeling well, she’s worried in the future she won’t be able to get her daily dose of hydroxychloroquine.
Owens’ life has changed immeasurably since she began taking it.
Owens said before she started taking the medicine, she was a mere 84 pounds and needed assistance to walk.
She still can’t work; the rheumatoid arthritis left her permanently disabled with “deformed hands and arms” but she’s happy and healthy, and enjoys cooking.
The hydroxycholorquine prevents lupus flare-ups.
“You get the lupus flare-up you be in so much pain, you get the rashes and sometimes you get hair thinning. There’s a lot of side effects to the flare-up but pain – severe pain – is really one of them,” she said.
While she doesn’t want to run out, she also hopes it is available if research does prove it to help with COVID-19.
“I just hope that it’s enough for everyone. For the lupus patients as well (as coronavirus patients), so everybody can get well and get healthy,” she said.
The Lupus Society of Illinois is keeping a careful eye on the situation, and has started a petition asking Illinois Gov. J.B. Pritzker to follow Ohio’s example, by taking action to help preserve chloroquine and hydroxychloroquine.
“A life lost to lupus is just as significant as a life lost to COVID-19,” the petition reads.
“Given the lack of evidence for the effectiveness of these drugs on COVID-19 and the risk to lupus patients who are struggling to get their prescriptions,” it asks that Pritzker prohibit prescriptions to “presumptive” COVID-19 patients; in other words, cutting off prescriptions of the drug as a coronavirus prevention tool.
It also asks that when hydroxychloroquine is prescribed to patients who have the coronavirus, that it is limited to a 14-day supply, without refills.
Follow Amanda Vinicky on Twitter: @AmandaVinicky