Lupus patients unable to get refills, healthcare providers saving it for COVID-19 patients

Posted at 5:21 PM, Mar 26, 2020
and last updated 2020-03-26 22:27:39-04

SAN DIEGO (KGTV) - Lupus patients were shocked and scared when they found out they couldn't get a refill of their life-altering prescription, due to COVID-19.

Grandmother Michele Fumar said her daughter has had lupus, an autoimmune disease, since she was 11. She's 27 now, married with two young kids.

Her daughter got an email from Kaiser Permanente reading in part, "in order to keep an essential supply of hydroxychloroquine (Plaquenil) for critically ill COVID-19 patients, we have placed a temporary freeze on refills.

"She was just shocked, we were all shocked," Fumar said about reading that email. "This drug is very important to maintain her health so yes it is just very frustrating."

The kind of lupus her daughter has attacks her kidneys. Even while taking her prescription she's had complications. Fumar said her daughter became ill at the mall several years back, suddenly weak with a headache. That trip to the emergency room turned into a week long hospital stay.

Fumar said her daughter has been trying to wean off of the medication with no luck thus far. "She only has 16 days left of her prescription." Now they're both scared. Her daughter was told to space out the medication, but they don't know how that will affect her health.

Janae Lessnau was just diagnosed with lupus in January. On average it takes six years to get diagnosed with lupus, meeting several criteria from several specialists, the Lupus Foundation says.

Lessnau said the drug has already had a huge impact on her life, "it helps with fatigue, it helps with the joint pain. It's not really affecting my kidneys or any vital organs right now but not being on it, it could increase the spread, you know increase the process."

Lessnau said she felt lucky to pick up her monthly prescription Tuesday at CVS. She heard at the pharmacy she won't be able to get a refill in the future.

In contrast, CVS put out a statement reading in part, "With client consent, CVS Caremark is setting appropriate limits on the quantity of each of these medicines for potential use in treating COVID-19. Members who already take these medicines for approved uses will be able to bypass the new quantity limits."

"We all feel bad for the patients who may be suffering from COVID-19 but it's not a proven solution," Fumar said. Lessnau agreed adding, "when did we get to the point where we pick and choose lives?"

The Lupus Foundation is contacting politicians in Sacramento for help, hoping to find a solution.

"Right now, today we can't say yes there is a shortage, I don't believe that's true. But what I am afraid of is it will be very quick, because if people are hoarding the drug it will turn out to be like the toilet paper," Executive Director of the Lupus Foundation Southern California Division Elizabeth Savage said.

After reaching out to Kaiser Permanente they said they are re-evaluating their policy.