In a new survey conducted by the Lupus Foundation of America, 55% of respondents taking antimalarials to manage their lupus reported having difficulty accessing their prescription for hydroxychloroquine or chloroquine, during March – May 2020 of the coronavirus (COVID-19) pandemic. The survey includes responses from 3,000 people with lupus and caregivers, with 90% taking antimalarials. Respondents represented every state including DC and Puerto Rico.

Hydroxychloroquine (Plaquenil®) and Chloroquine (Aralen®) are antimalarials, and hydroxychloroquine is approved by the U.S. Food and Drug Administration (FDA) for the treatment of lupus and rheumatoid arthritis. They are often considered essential long-term medications and a foundational treatment for the management of lupus, associated with reduced number of lupus flares, decreased damage from lupus over time and increased long-term survival. These medications are being studied and utilized during the coronavirus pandemic as a potential treatment for COVID-19.

Issues that respondents reported facing when accessing prescriptions for hydroxychloroquine or chloroquine over the three-month period included: 

• Only being able to receive a partial refill (50%)
• Delay in refill (43%)
• Had to show additional documentation of lupus diagnosis (12%)
• Not being able to get refill (7%) 

When asked their top concerns during the pandemic, survey respondents reported not being able to access or receive coverage for medications among the top three areas of concern, in addition to contracting COVID-19 and states reopening too early.

“People with lupus rely greatly on hydroxychloroquine and chloroquine to treat their disease. There is very strong data on the long-term beneficial effects of these medications in lupus, such as reducing irreversible organ damage like cardiovascular disease and kidney disease,” shared Karen H. Costenbader, MD, MPH, Chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council. “As a rheumatologist, it was troubling to see many of my patients running into issues and some even unable to fill their prescriptions for hydroxychloroquine, as the inability to access the medication and take it as directed can result in worsened symptoms and flares – and even require immediate medical attention.” 

Of the 89% of survey respondents who reported taking hydroxychloroquine to manage their lupus, 66% had been taking the medication for five years or more, showing the long-term dependency on these medications to help manage the disease. The survey also found that issues accessing hydroxychloroquine and chloroquine were prevalent across the country, with respondents in California, Florida, New York, Texas and Maryland as the top five states where people with lupus reported issues.

“The health and safety of all people with lupus is always our top priority. As soon as hydroxychloroquine and chloroquine emerged as potential treatments for COVID-19, we began implementing extensive advocacy efforts, including reaching out to government agencies, elected officials, state pharmacy boards, drug manufacturers and other key stakeholders, to ensure people with lupus could fill their prescriptions of these vital medications, while also issuing important news and resources daily to help people with lupus during this time,” shared Stevan W. Gibson, President and CEO, Lupus Foundation of America. “While it was important to investigate these medications for treating COVID-19, it was also critically important that people with lupus could maintain their access to these medications that reduce their symptoms, improve quality of life and have potential life-saving benefits for people with lupus.”

The survey found that currently, of those taking hydroxychloroquine or chloroquine, a third of respondents (33%) are still reporting challenges filling their prescriptions, with 42% of those reporting they are only able to get a partial refill.

For more key findings from the survey, click here and for more information on the coronavirus and lupus visit lupus.org/coronavirus.