NEW YORK, NY, May 28. More than one third of people with lupus experienced significant issues filling their hydroxychloroquine (Plaquenil) prescriptions during the COVID-19 pandemic, according to results of a new survey conducted by the Lupus Research Alliance (LRA). Hydroxychloroquine shortages in March and April coincided with early data broadly reported in the media suggesting possible benefit for hydroxychloroquine to treat or prevent COVID-19.
The survey included 334 people with lupus living in the U.S. who had already been taking hydroxychloroquine to manage symptoms related to this difficult autoimmune disease. The survey queried people with lupus on their experiences from March 1 through May 18, 2020. Respondents represented 42 states, District of Columbia and Puerto Rico.
Key Findings on Experience with Hydroxychloroquine
- Survey respondents had been taking hydroxychloroquine for an average of 11.4 years
- 31% of people surveyed had issues getting refills
- 5% were not able to refill their prescriptions during the time frame
- Of the 36% who were not able to or had issues with refills
- 66% had enough to take full dose
- 33% split doses
- 9% were completely out
- Of the 72 people who reported eventually being able to get their refills
- 36% could not get it from their regular pharmacy
- 58% reported it taking two or more weeks to get their refills
Comments from nearly 200 respondents reflect the trials that people with lupus experienced. One person wrote, “I tried to refill my prescription, but they said I can only have two weeks’ worth. So, I’m taking what’s left of that allotment and will try again to refill.” Another survey respondent was only able to fill her prescription after three weeks of calling different pharmacies. A third person reported that her physician advised splitting her regular dose in half until the supply shortage abated.
What Do These Results Mean?
“To help alleviate and prevent a similar situation in the future, the LRA has emphasized to the U.S. Food and Drug Administration and other government agencies how the hydroxychloroquine shortage impacted people who rely on the drug,” noted Dr. Gary Koretzky, Vice Provost for Academic Integration, Cornell University, Professor of Medicine at Weill Cornell Medicine, and Chair of the Lupus Research Alliance Scientific Advisory Board. “We were pleased to put this issue on the radar for our colleagues at the FDA as it is clear that there is interest in closely monitoring how patients with lupus are faring.”
Dr. Koretzky added that the LRA is also aware of media reports about hydroxychloroquine side effects reported in COVID-19 patients. He urged lupus patients prescribed hydroxychloroquine “to remember that their rheumatologists have suggested this medication because of its effectiveness in treating disease and its well-demonstrated safety profile.” He cautioned that patients should certainly discuss their personal situation with their physician before discontinuing this or any other medication.
“The survey results offer real-world data about the access of lupus patients to hydroxychloroquine,” said LRA Chief Scientific Officer, Dr. Teodora Staeva. “While we are encouraged by the results, the Lupus Research Alliance will continue to monitor the situation closely. We still recommend that people with lupus speak with their health care providers about a contingency plan should any shortages arise in the future.”
Click here for full survey report.
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90 percent of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. African Americans, Latinx, Asians and Native Americans are two to three times at greater risk than Caucasians. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints.
About Lupus Research Alliance
The Lupus Research Alliance aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100 percent of all donations goes to support lupus research programs.