A recent survey conducted by the Lupus Foundation of America via Qualtrics explores the impact of the coronavirus on people with lupus and whether they faced access issues to medications, such as hydroxychloroquine, during the months of March - May of the coronavirus (COVID-19) pandemic. 

The survey had 3,000 respondents covering every state in the US, including DC and Puerto Rico, with 95% (n=2,855) reporting having lupus, and of those, 73% (n=2,186) having systemic lupus erythematosus (SLE) and 19% (n= 572) having SLE with lupus nephritis (kidney disease). 

Of the respondents, 90% (n=2,690) take antimalarials to manage their lupus, with 99% (n=2,668) of those taking hydroxychloroquine and 1% (n=17) taking chloroquine.

The study also found:

The top three concerns during the pandemic that respondents (n=3,000) selected:

Of respondents taking antimalarials such as hydroxychloroquine and chloroquine (n=2,690), 45% (n=1,207) reported experiencing “no challenges” with filling their prescriptions. Only looking at respondents taking antimalarials and who faced challenges (55%, n=1,483), half of respondents were only able to get partial refills and nearly half had delayed refills:

*Various responses were captured under “Other,” including increased out-of-pocket costs, receiving generic medications over branded, and additional burden in locating pharmacies able to provide refills (e.g. through calling, travel, assistance from family/friends):

• Days before the publicity, I sought a longer supply due to Covid concerns, but had to pay cash out of pocket
• Had to pay $50.00 for Plaquenil when my copay is normally $5.00
• Given a generic brand and it concerned me greatly
• Had to go out of state [to get a refill]
• Had to call around to multiple pharmacies and pay cash for refill
• Questioned about why I was using the medication
• I have had to get my refills out of state via friend/family networking 
• I was unable to get a refill at my home pharmacy … and so I immediately called my uncle in Oklahoma and then called his pharmacy. They had some but it wasn't covered by my insurance so I paid out of pocket. I am due for another refill soon and I'm not sure if I'll be able to get it
• Waiting to refill due to $440 cost
• Has to pay $450 out of pocket to get it
• Had to get brand name due to limited generic manufacturer options
• They tried to give me a brand I was allergic to saying the one I take was out of stock

​​​​​​​Respondents taking antimalarials reported being on them for several years, and many as long-term treatment. When asked the number of years they have been taking an antimalarial, like hydroxychloroquine or chloroquine, respondents reported:

Of the respondents taking antimalarials and facing challenges getting their prescriptions (n=1,483), the following states had the highest responses:

Followed by Pennsylvania, Georgia, Illinois, New Jersey, Virginia and North Carolina.

Currently, 33% (n=900) of respondents on antimalarials report still having challenges filling their prescriptions. Specific challenges are:

• *Various responses were captured around “Other” challenges, including challenges with pre-authorization requests, delays in seeing healthcare providers to renew prescriptions, having to receive generic medications over branded, or additional travel/cost burden:
  • My doctor won't provide refills until I see him. He has been out of the office and I have had to reschedule twice and now once again. I have been off Plaquenil for 1 month and having lupus joint, muscle flares and pain and tire very easily.
  • I have to have my provider contact my insurance company to authorize it
  • I just filled my prescription and was told that the pharmacy likely won't be able to fill next month.
  • I am still being given the generic brand which was causing a reaction to me.
  • STILL having to go out of state and pay out of pocket.

When asked where respondents go to find the most trustworthy and credible coronavirus information, respondents selected their top three choices: government agencies, such as CDC, state and local health departments (60%), Lupus Foundation of America (59%), and their doctor or healthcare team (54%). 2 in 3 respondents found information on hydroxychloroquine - such as information on the shortage, tips for getting a refill, and what state pharmacy boards were doing - the top most helpful Lupus Foundation of America resources related to the coronavirus pandemic.

Demographics of survey respondents:

• Average respondent age was 50.7 years old (n=2,951)
• 94% (n=2,823) of respondents were female, 5% male (n=163), and 0.5% (14) preferred not to answer
• Reported race/ethnicity (select all):

• Reported insurance type