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.