INDIANAPOLIS— Some Hoosiers living with lupus are worried they won’t be able to get the drug they need after President Trump said it could be a treatment for coronavirus.
The Food and Drug Administration hasn’t even approved hydroxychloroquine as a treatment for COVID-19, but that hasn’t stopped people from hoarding it and causing a shortage for those who need it most.
“I have about two weeks’ worth yet, but I have been off of it for five days,” said Hoosier Suzi Swinehart.
Swinehart has been battling lupus since 2001. She has been in and out of the hospital.
It got even harder this week when she got a text message from her pharmacy saying the drug she takes to treat her lupus, hydroxychloroquine, was out.
“I’m sure I’ll just have more and more of the joint inflammation. Lupus just causes a lot of inflammation for me. It affects my joints, my kidneys, my skin. I have central nervous system effects. I’ve had a couple strokes,” said Swinehart.
Swinehart isn’t alone.
The Indiana Chapter of the Lupus Foundation of America says many other lupus patients have been missing out on getting their medicine after it was announced hydroxychloroquine could be a potential treatment for COVID-19.
“We hear that nursing homes are requesting it, and doctors are requesting it. But doctors are also filling requests and sending prescriptions in for patients who do not have COVID-19, they just want to take it as a precautionary measure,” said Lisa Kelly, the executive director of the Indiana Chapter of the Lupus Foundation of America.
Kelly says hydroxychloroquine is already hard to come by.
The Lupus Foundation sent letters to Vice President Mike Pence and Indiana Gov. Eric Holcomb this week, urging them to help keep the drug available to the 36,000 Hoosiers with lupus who need it most.
“I had no idea. Who could fathom that this would affect the patients I care about and love, that need these prescriptions, every day to survive?” said Kelly.
In the meantime, Swinehart just hopes she can get her full supply of medicine and if it works for COVID-19 patients, there is enough to go around.
“People need to be responsible; doctors need to be responsible and not just prescribe this out and considering the effects it has on people like me, with lupus,” said Swinehart.
Kelly says she has not heard back from Holcomb or Pence.