SUNNYVALE, Calif. (KGO) -- A South Bay woman's supply of life-changing medication has been cut off because officials at Kaiser Permanente say they have to save the drug for coronavirus patients. But, the medication has not been proven to be effective for COVID-19 yet.
So much has happened in just the past week on this issue. Demand for hydroxychloroquine soared after President Trump discussed it, at his daily COVID-19 briefings.
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47-year-old Mara Capio is a hospital social worker from Sunnyvale who developed an autoimmune disorder called "Sjorgen's Syndrome" after the birth of her second child. The condition depletes energy, causes pain, and can make it more difficult to fight off infection.
"I noticed I was having achy joints in my hands, my feet, my knees," Capio told the ABC7 I-Team.
For 16 years, she has had a prescription for hydroxychloroquine, but last week, Mara's doctor at Kaiser Permanente emailed her, "We are not able to refill your hydroxychloroquine refill at this time. ... (It's) now reserved for those who are the most ill from COVID-19".
"If it's a miracle cure, I would be okay with that," Capio said. "But the fact that's not even the case yet and they don't even know if that's an option and they're already limiting medications, it's very frustrating."
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The pharmacist gave Capio a final two-week supply; she has cut the pills in half to make them last longer.
In a statement to the I-Team, Kaiser's Dr. Sameer Awsare writes, "We are sorry the concern this may cause. We have asked our physicians to work with their patients to convert when appropriate from hydroxychloroquine to very good alternative other medications."
But Capio tells us other medications have serious side effects, and she is worried about her symptoms returning.
Mara Capio: "It's just going to severely impact me being able to go to work."
Dan Noyes: "And your ability to function."
Mara Capio: "Definitely, yeah. Raising my three children, I'm a single mom."
Dr. Michael Ackerman of the Mayo Clinic told us, "That is not the right way we should be doing medicine." He said hydroxychloroquine is relatively easy to manufacture, so supply should not be an issue, and "As tragic as COVID-19 pandemic is, our patients out there with lupus and Sjogren's who are being therapeutically helped by these medications, they deserve to stay on these medications."
Demand for the drug soared once President Trump began promoting it as a possible COVID-19 treatment at his news conferences, including this week. The FDA's drug shortage database now lists hydroxychloroquine as "currently in shortage". It's going through clinical trials as a possible coronavirus treatment.
President Trump said on Tuesday, "The good news is we haven't heard anything bad, there have been no catastrophic events."
But Dr. Ackerman published a study one week ago that finds "patients at risk of drug-induced sudden cardiac death from off-label COVID-19 treatments" including hydroxychloroquine. He told us 10 percent of the population may be at risk of dangerous side effects to the heart, and that 1 percent of people are at especially high risk: "One percent of a million is 10,000 patients who are at legitimate risk for a tragedy from the treatment itself."
Anecdotal evidence is coming in, that hydroxychloroquine may help treat coronavirus.
Gary Brady told the I-Team's Dan Noyes, "64 and I'm just happy to be alive."
Brady is a retired Santa Clara County detective who contracted coronavirus, as did his wife and children. He was seriously ill and had pre-existing conditions, but after doctors gave him hydroxychloroquine, Brady tells us he bounced back.
"I was only there in intensive care for five days, I was out and they sent me home with this breathing machine and the doctor said tomorrow I can take myself off because my oxygen levels are better. Three days ago, I couldn't even talk to you like this, I couldn't even carry on a conversation."
We're seeing a range of actions by companies that make hydroxychloroquine. One has donated a million doses to the state of Texas, but some foreign companies are banning the export of the drug to the U.S.
Here is the full statement from Kaiser Permanente:
From Sameer Awsare, MD, Associate Executive Director, The Permanente Medical Group, Kaiser Permanente
There continues to be a shortage of hydroxychloroquine, and in fact on Tues., March 31, the FDA added the drug to its drug shortages list due to a significant surge in demand. The American Society of Health-System Pharmacists also includes hydroxycholoquine on its drug shortage list.
Kaiser Permanente is managing its supplies of hydroxychloroquine to meet the existing needs of patients who do not have viable alternatives (including patients with lupus), and also to ensure access for severely sick patients hospitalized with COVID-19 infections. This may result in the need for physicians to advise some patients change medications during this shortage, and we are sorry for the concern this may cause.
We have asked our physicians to work with their patients to convert when appropriate from hydroxychloroquine to very good alternative other medications. As drug manufacturers ramp up production to meet the increased demand across the U.S. and the world, and supply becomes available, our physicians will evaluate these dispensing protocols and adjust accordingly.
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