Woman told to ration lupus medication during coronavirus outbreak

OAKLAND, Calif. - A crucial drug to treat lupus patients is being used as a potential treatment for coronavirus. Now, there’s a global shortage of the medication leaving one Oakland woman with lupus with a limited supply.

Leah Romanelli was diagnosed with lupus a few years ago and this is her reality: “I definitely couldn’t function without my medication.”

But when Romanelli went to Kaiser to get her normal 90-day supply of hydroxychloroquine, she was only given a 14-day supply.

“My biggest concerns is not being able to obtain the medication especially in the future and going into a flare, a bad flare that could potentially hospitalize me,” she said.

Hydroxychloroquine (and the brand name version, Plaquenil) and chloroquine are two medications being used as potential treatments for coronavirus, which is causing the global shortage according to Kaiser.

That means people like Leah are being limited to a 14-day supply at a time. In a statement, Kaiser said they’ll do this until supplies match the significantly increased demand.

Romanelli said after speaking to Kaiser, she’s worried about her supply in the future, “I said, ‘Is it guaranteed that it’s in stock, what happens if it’s not?’ and they said, ‘We can’t guarantee anything. We don’t know what’s going to happen, but we’re just trying to prevent a shortage.’”

A statement from Kaiser said, “If we don’t take steps to mitigate the shortage, we all will face the real possibility of running out of these drugs in the next few weeks.”

Kaiser says they’re contacting patients on these medications and trying to convert them to alternative medications.

People living with arthritis and psoriasis among other issues who take this medication have other good options according to Kaiser, but the Lupus Foundation of America said in a statement, “For many people with lupus there are no alternatives to these medications. For them, hydroxychloroquine or chloroquine are the only methods of preventing inflammation and disease activity that can lead to pain, disability, organ damage, and other serious illness.”

Romanelli said her frustration comes from not getting a heads up until she went to pick up her prescription, “There was no notices from Kaiser saying this is what could potentially happen.”

Kaiser expects drug manufacturers to ramp up production in the next few weeks and in the meantime they are, “Taking steps to ensure we have adequate supply to meet the existing needs of patients who are taking these medications and also ensure access for severely sick patients hospitalized with COVID-19 infections.”

For Romanelli, the anxiety of the unknown doesn’t take away from her compassion for those struggling

“My heart goes out to anyone who takes this medication, especially lupus patients, anyone who depends on it I hope they can come up with a solution soon,” she said.

Sara Zendehnam is a reporter forKTVU.  Email Sara at sara.zendehnam@foxtv.com and follow her on Twitter@szendehnam