Wilmington lupus patients work through coronavirus-related drug shortages

Lupus patients discuss medicine usage

WILMINGTON, N.C. (WECT) - Since President Trump announced some drugs already on the market were having success against the coronavirus, there’s been a mad dash of people looking to get their hands on chloroquine and hydroxychloroquine.

The resulting drug shortages have thousands of people who rely on the drugs to treat chronic illnesses like lupus and arthritis scrambling to make sure they can refill their prescriptions.

Tammy Scott of Wilmington is one of nearly 53,000 people in North Carolina who live with lupus. Lupus is a chronic illness where your immune system attacks healthy tissue in your body.

"Lupus is kind of like a snowflake…any day could be different… any part of the day could be different... you never know what you’re gonna get until you get into it,” Scott mused of her condition.

Many patients, including Scott, are prescribed Plaquenil, a form of hydroxychloroquine, that allows them to manage the disease.

“The majority of lupus patients take it and it keeps their symptoms at bay so they can function on a daily basis. If they don’t take the medicine, it can lead them into whats called a lupus flare, which is extremely detrimental to their health. Long term, it can result in organ failure which would put a person with lupus in the hospital in an already stressed medical system,” said Jenny Prince, president and CEO of the Lupus Foundation of America’s North Carolina Chapter.

Those lupus flare ups are usually miserable experiences.

“It’s usually horrible fatigue, joint pain, muscle pain... its just where you’re fighting everything and anything it has and it just starts...it wears you down,” Scott said.

There are no good alternatives to chloroquine and hydroxychloroquine for people on the medications for lupus, according to the Lupus Foundation of America.

"As far as new lupus drugs on the market…there has not been one in a very long time that does what this drug does. This is really kind of ‘it.’ I think that’s why there’s been a lot of fear and anxiety with our constituents wanting to ensure this drug is available to them, not just in the short term but in the long term as well,” said Prince.

As soon as President Trump announced her medicine could be a potential treatment for the coronavirus, Scott called her doctors and got a 90-day supply of pills just to be safe. Many people she knows in the lupus community haven’t been so lucky; Scott’s heard of some lupus patients cutting their doses to make their prescriptions last longer due to the shortages.

The North Carolina Pharmacy Board passed an emergency rule on March 24, to specifically mitigate drug shortages of hydroxychloroquine and chloroquine. The drugs noted in the emergency rule cannot be dispensed for presumptive cases or to prevent the coronavirus, and in cases where there is a confirmed diagnosis of COVID-19, the prescription is limited to 14 days.

“What that means is that anyone with an existing condition and an existing prescription will be prioritized in getting their medicine refilled. Some states aren’t doing that. Its really great that that’s happening in North Carolina,” Prince added.

While the emergency rule is one safeguard the state has put in place, nationwide shortages and back orders could still potentially impact the ability of pharmacies to fill prescriptions.

The Lupus Foundation of America urges people having trouble refilling their prescriptions to contact their doctor now, request a 90 day supply and submit the refill to the pharmacy early. If your normal pharmacy is out, call around to different pharmacies in your area, including grocery store pharmacies, or event try reaching out to mail order or online pharmacies.

Experts note that while there’s anecdotal evidence the drugs can ease the coronavirus, there have been no clinical trials completed yet. The World Health Organization says they’re beginning a multi-country clinical trial of a number of drugs that have the potential to be effective against the coronavirus.

Copyright 2020 WECT. All rights reserved.