March 26, 2020
The Lupus Research Alliance (LRA), the world’s leading research organization dedicated to lupus research, continues to watch rapidly changing developments regarding COVID-19 and is closely monitoring the policies and actions of the federal government, healthcare agencies, medical organizations and the pharmaceutical industry on behalf of people with lupus. Thrust into the spotlight has been news about the potential benefit of anti-malarial drugs commonly used for lupus, hydroxychloroquine (brand name Plaquenil) and chloroquine, in treating COVID-19. With that, shortages have quickly developed.
The LRA is issuing this statement to assure the lupus community that: (1) the organization is working with all relevant parties to alleviate the Plaquenil shortage and (2) to reassure the community that if they can’t get Plaquenil refilled temporarily as a result of the shortage, there are other treatments that can be discussed with their physician.
Anecdotal evidence from small studies suggests that hydroxychloroquine and chloroquine drugs may reduce symptoms of COVID-19 and slow down replication of the virus. While these drugs are not officially approved by the U.S. Food and Drug Administration (FDA) to treat COVID-19, some physicians are treating patients with Plaquenil on an “off-label” basis.
Given this extraordinary development, shortages of Plaquenil are quickly developing. In many pharmacies, especially in New York and California, the drug has been unavailable.
The Lupus Research Alliance and other organizations in rheumatology have urged the FDA to address the shortages and the past few days have brought some good news including: commitment from the FDA to preserve the supply of hydroxychloroquine for patients already taking it as well as a dramatic increase in the manufacture of these drugs and donations by a number of pharmaceutical companies.
The LRA is a sponsor of a new initiative — the COVID-19 Global Rheumatology Alliance — a grassroots group led by rheumatologists and uniting rheumatologists and patients with rheumatic diseases worldwide to respond to the global pandemic. In concert with the American College of Rheumatology, the group has created a secure international data registry called the COVID-19 Rheumatology Registry. It is designed for healthcare providers to share their experience treating specific cases of people with rheumatologic conditions such as lupus who develop COVID-19. Reporting will also record how common rheumatic medications such as Plaquenil impact patients’ outcomes and evaluate the risk of infection in patients on immunosuppression. The de-identified information collected in this registry will be shared with the scientific community for analysis. A patient-entered registry component is currently under development.
Lupus Management Can Weather Temporary Shortage
In consulting with top lupus physicians and reviewing the scientific literature, the LRA also wants to reassure people with lupus that not taking Plaquenil or taking a lower dose for a short period of time is concerning but not cause for alarm.
“We are doing everything in our power to prevent a Plaquenil shortage from impacting the care of people with lupus,” commented LRA President & CEO Ken Farber. “But I also want to allay the fears we are hearing from people with lupus.”
“Many of the latest developments to address COVID-19-related shortages have been encouraging,” noted renowned lupus specialist Daniel J. Wallace, MD, FACP, MACR, Associate Director, Rheumatology Fellowship Program, David Geffen School of Medicine Center at UCLA in affiliation with Attune Health and LRA Board of Directors member, “We are working hard to support the needs of people with lupus and rheumatoid arthritis. Many pharmacies have banded together to guarantee a Plaquenil supply to patients with proof by their rheumatologist that they have these conditions and are currently on the drug. Pharmaceutical companies are also increasing production.”
The Lupus Research Alliance will continue to monitor the situation closely and push for continued access for people with lupus while working to ensure shortages abate in the future.
For more information, see LRA COVID-19 Frequently Asked Questions.