Mara Capio tries not to think about how her body will feel in a month when her hydroxychloroquine prescription runs out. But unless something drastic happens, the 47-year-old Sunnyvale resident will have no choice but to deal with the full force of Sjogren’s syndrome—an autoimmune disorder she was diagnosed with 16 years ago.
A shortage of hydroxychloroquine, which sells under the brand name Plaquenil, is one of the many unforeseen consequences of the ever-advancing coronavirus pandemic.
Though evidence is scant for the drug’s effectiveness against COVID-19, the nation has seen widespread shortages of the drug ever since President Trump called it a “game changer” at a press conference earlier this month. Last weekend, he tweeted that, “HYDROXYCHLOROQUINE & AZITHROMYCIN, taken together, have a real chance to be one of the biggest game changers in the history of medicine.”
A derivative of an antimalarial treatment, chloroquine has been used to treat COVID-19 in China and South Korea and is undergoing clinical trials here in the U.S.
Capio, a social worker at the Palo Alto Veteran’s Administration Hospital for 19 years, received the bad news about the rationing early last week, during a one-hour visit at the Kaiser Permanente pharmacy in Mountain View.
“They told me they were only able to get me two weeks worth [of Plaquenil] and I’d have to come back in another week to get another two weeks’ [supply],” she said. “I stumbled across the medical director there and was told that they had plenty of Plaquenil and they weren’t restricting it. I went back to the pharmacy to see what was taking so long and was told they had to talk to my insurance provider to get approval for medication.”
The mixed messages confused her.
“I told them, ‘But I don’t understand—Kaiser is my insurance,’” she recounted. “‘What approval do you need? I’ve been on Plaquenil for 16 years. Why do you need approval?’”
On March 25, Capio said she got an email from her rheumatologist, who reportedly told her they were unable to prescribe any more of the medication for people with autoimmune diseases because they’re saving it for people with COVID-19.
Despite a paucity of evidence that Plaquenil can safely treat the novel coronavirus, demand for the drug has spiked—especially since Trump’s vocal endorsements.
Multiple reports have surfaced that doctors across the country are writing Plaquenil prescriptions for their family and friends while some hospitals hoard the treatment to prepare for the worst. Yet increased demand for the once-obscure drug comes at the expense of Capio and millions of other Americans with autoimmune diseases.
“That really upsets me because they don’t have COVID-19, and they don’t have an autoimmune disease,” Capio said. “There is no reason for them to be having it. If Plaquenil was the big cure and it helped everyone with COVID-19, I don’t mind suffering and I would be more understanding.”
When asked for comment, Kaiser responded with a written statement, saying, how “there is a global shortage of Plaquenil,” and that the company is “actively converting patients from Plaquenil to other medications, especially for many patients with rheumatoid arthritis, psoriasis, and dermatomyositis, where very good alternative medications exist.” A hospital spokesman added: “Physicians are individually contacting their patients to explain this process and discuss their medications.”
Capio said she has either talked or exchanged email messages with several different healthcare officials about her situation, including Kaiser’s supervisor of patient services at the Mountain View facility and the U.S. Food and Drug Administration (FDA).
The FDA drug shortages department emailed her back to say there’s no shortage of Plaquenil, and that she should be able to get it, according to Capio.
“So everywhere I go there is a different story,” she said, “and all I know is I need the medication so I can function and go to work.”
Capio said she’s scared about the potential health issues she faces once her current prescription runs dry in late April.
“My body is not going to have that extra defense,” she laments. “I’ll be more prone to any illness. I have three kids and usually I am the one getting sick first, not the kids. I’m more likely to get sick from anything, and if it’s COVID-19, I’m more likely to have symptoms from it. It really scares me. I’m not sure what I’m going to do at that point.”