AUSTIN (KXAN) — “I will be out of this medicine in eight days,” wrote a panicked lupus patient.
“I’ve been taking the brand of this drug (because it works best for me)… since 2013.”
The woman has been trying to fill her prescription for hydroxychloroquine and reached out to KXAN News asking when it would be available.
Meanwhile, 13-year-old Kylie Quinn, takes the same medication every day.
She was diagnosed with lupus in 2018.
The athlete tells KXAN investigator Arezow Doost that her illness impacted her ability to play soccer, swim and dance.
“I couldn’t walk. It was really hard,” says Kylie. After she started taking her medication she says she was back to her routine.
“I could run again. I could walk again.”
The family refilled her prescription in February, but worry about the coming months.
“We only have enough supply for a month-and-a-half, and then I’m not sure what we will do,” says her mom Kristin Quinn.
Hydroxychloroquine and chloroquine are used to not only treat lupus, but also rheumatoid arthritis and malaria. The drugs have shown promise in treating COVID-19, but they’re not FDA-approved.
“It’s concerning to us. She’s an active child without the medication she doesn’t function well, she has joint pain, she has stiffness, she can’t generally hold pencils. So, to not give it to her every day is an issue,” explains Kristin, behind Kennedy’s Heartfelt Promise which supports the Lupus Foundation Lone Star Chapter. “She wants to live a normal life, and we want her to live a normal life. Without it, I don’t think she would.”
KXAN investigators uncovered that doctors across the state have been hoarding those drugs.
Concerns from pharmacists pushed the Texas State Board of Pharmacy to put limitations in place for a handful of drugs. The new guidelines came after Executive Director Allison Benz says the agency was getting reports of doctors filing extra prescriptions for themselves, their families and staff.
According to data obtained by TSBP in Texas the number of prescriptions for those drugs spiked significantly. During the week of March 8 to the 15, the number of prescriptions for the drugs went from 2,487 to 7,546.
Organizations like the Lupus Foundation of America are urging state pharmacy boards to make sure the critical medications are available.
“In many cases, patients are forced to ration their medication or go without it altogether, placing them at risk for worsening disease,” said the foundation online in a letter to stakeholders.
The organization says patients are reporting that they are unable to fill prescriptions because the drugs are set aside only for use in COVID-19. Even if the medication is available patients have reported that they must first obtain approval from a third party certifying that they are eligible to receive the medication.
“This delays patient access to their medication,” explains the letter.
The foundation also says prescriptions are also being limited to seven or 14 days and demands exceptions to quantity limits be made immediately.
There are no FDA-approved drugs specifically for the treatment of patients with COVID-19. The agency says studies are underway to determine the if the drugs will combat it.
“There is a significant surge in demand of chloroquine/hydroxychloroquine and we are doing everything possible to work with manufacturers to increase production,” says Michael Felberbaum with the FDA. “We are working with manufacturers to assess their supplies and are actively evaluating market demand for patients dependent on it for treatment of malaria, lupus and rheumatoid arthritis.”