Lupus patients nervous over run on Trump-dubbed ‘game-changer’ COVID-19 drugs

Coronavirus

DENVER (KDVR) — Patients who use the medication hydroxychloroquine to combat debilitating symptoms associated with lupus or rheumatoid arthritis say they’re worried about a potential shortage of the medication after President Donald Trump suggested it could be possibly a “game-changer” in the fight against COVID-19.

“It’s scary and it’s stressful, and I worry about myself. I worry about my patients. It makes me very nervous,” said Alaina Schilling, a pregnant medical assistant who uses the drug to prevent bad rashes, joint pain and fevers that sometimes prevent her from getting out of bed.

“I can’t stop this medication right now. It’s the only medication for lupus that is approved for pregnancy and breastfeeding, so if we run out of the drug, I can’t take anything else for my lupus right now, so it would go haywire,” she said.

Schilling, who works at the Arthritis and Rheumatology Clinic of Northern Colorado, said she fielded at least 40 calls in the last 24 hours from other concerned patients who have had trouble filling their prescriptions. The facility handles patients around Colorado, Wyoming, South Dakota and Arizona.

“There is starting to be a shortage of the drug in the smaller towns,” she said. “Cheyenne, Wyoming is having a hard time getting the drug in,” she said. 

Schilling said mail-order pharmacies are also having difficulty keeping the medication in stock.

“That is really scary because that’s some of the only drugs that are working for these people,” she said.

On Thursday, the Colorado Pharmacists Society sent a letter to the governor, asking for limitations on how the prescriptions are dispensed.

“A lot of states are doing this,” said Emily Zadvorny, the group’s executive director. “What we are asking for is that if there are prescriptions for these medications that they indicate on the prescription that they have a legitimate medical purpose and what that diagnosis is.”

“We’re also asking to not start new prescriptions for those medications, but if they are being continued before March 8, 2020, then they can continue those,” she added.

Zadvorny said any prescriptions written for COVID-19 patients should only be dispensed to patients who have recently been hospitalized.

“There is a little bit of evidence, again, in the truly sick people, that his might be part of a treatment algorithm. So those are the things we’re asking for in our letter to the governor’s office,” she said.

Colorado’s Department of Regulatory Agencies, which represents the state’s board of pharmacy, released similar guidelines on Thursday, threatening discipline for prescribers who “fail to meet their corresponding generally accepted standards of practice.”

“The Colorado State Board of Pharmacy, the Colorado Medical Board, and the Colorado Nursing Board are concerned about the inappropriate prescribing of hydroxychloroquine, chloroquine, azithromycin, Kaletra, and potentially other medications, often in large quantities with high number of refills, to respond to the COVID19 pandemic,” the guidance said.

“The drugs are commonly used to treat malaria, lupus, rheumatoid arthritis and other conditions. According to the Centers for Disease Control, there are no US Food and Drug Administration (FDA)-approved rugs specifically for the treatment of patients with COVID19.  There is, at this date, only anecdotal evidence of their potential usefulness,” the notification said.

The state’s recommendations, which were also distributed by the American Society of Health-System Pharmacists, suggest that the drug hydroxychloroquine be set aside for patients with “known autoimmune disorders and those ill enough to be hospitalized for COVID19.”

Zadvorny said she had not yet seen or heard of a severe shortage in Colorado but said she had heard of physicians writing prescriptions for “non-legitimate medical issues – meaning COVID19,” she said.

“What we’re seeing is they may be writing it for themselves, for their family members, for their friends. And of course we understand everybody is scared, and of course we understand that you’d like to do everything you can, but that’s not appropriate, and it’s truly unethical to write prescriptions for people in your family and your friends,” said Zadvorny.

She said there are known side effects to the drugs if they are used inappropriately or in connection with other medications.

“Your heart can go into irregular rhythms with these drugs,” she said. “There are definitely people that it would not be appropriate for. People with kidney problems, liver problems,” she said.

Dr. Jaclyn Munson, a doctor of optometry at Fort Collins Family Eye Care, said some of the drugs can put patients at risk of permanent eye damage.

“There are important ocular side effects of the proposed medications for treatment of COVID-19 that our community needs to be aware of,” she said. “Damage to the health of retinal cells in the back of the eye is of primary concern with the proposed medications.”

“Fort Collins Family Eye Care works diligently with other prescribers in the community who utilize these helpful, yet high-risk medications such as chloroquine, hydroxychloroquine, Plaquenil, and other HIV drugs. These potential treatments for COVID-19 must be used judiciously and in close coordination with preventative eye care providers,” she said.

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