AUSTIN, Texas — “I don't treat myself like I’m sick. I don't want to live like that,” said Lana De Leon, a lupus patient from Texas.
It took hospitalization before Lana De Leon found out why she was feeling so bad so often.
“We didn't know what it was,” said De Leon.
Several tests and finally diagnosed – lupus. It suppresses the immune system and is incurable. Medicine can manage the pain and reduce the inflammation. That eases her chronic joint pain.
“[Without the medicine], every day feels like the flu. I am trying to breathe.”
The medicine she needs is in short supply. Lupus patients need hydroxychloroquine and chloroquine. Recently, the FDA approved them to go straight from manufacture to hospitals, noting they "are not FDA-approved for treatment of COVID-19" but "it may be effective in treating COVID-19."
The Lupus Foundation of America sent a letter to the White House asking in part to “prevent unreasonable price increases” and for “refills of a 90-day supply” for patients.
“They needed to survive, to live, to have a normal life, to not go into flare and potentially die,” said Adrienne Kohlenberg, patient services marketing manager with Lupus Foundation of America, Lone Star Chapter.
When state pharmacy boards, like in Texas, limited the medications at pharmacies, the Lupus Foundation again made a plea.
The foundation said the limitations create barriers and puts patients "at greater risk for exposure to COVID-19 by requiring them to travel outside their home more frequently to fill their prescriptions."
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De Leon moved up to Denver a few weeks ago. At the time of this interview, she was down to a handful of pills.
De Leon started lowering her dosage to stretch out the supply because all pharmacies she called were out of stock.
“I’m starting to feel pain. But, you know, what can I do?” she said.
Several days later, she found medicine at a local pharmacy.
The Lupus Foundation has several tips for finding treatment. The Lone Star Chapter said anyone is welcome to call toll-free: 866-205-2369.
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