Organizations Call on Pharmacy Boards to Make Sure Patients Receive Chloroquine and Hydroxychloroquine, A ‘Life-Saving’ Lupus Therapy, Amid COVID-19 Experimental Use

Nationwide shortages of hydroxychloroquine (Plaquenil) and chloroquine (Aralen) have raised concern among patients who rely on these medications—as well as the advocacy groups who represent these patient populations.

Hydroxychloroquine and chloroquine, antimalarial drugs used to treat patients with lupus and rheumatoid arthritis (RA), have been identified as possible drugs effective in patients with coronavirus (COVID-19). As a result, patients with RA and lupus have had a difficult time obtaining their medications—or been unable to obtain them at all.

The Lupus Foundation of America and Arthritis Foundation have partnered to call on pharmacy boards and other involved stakeholders to make sure that patients who rely on these medications are still able to take them.

“Most people with lupus now rely on hydroxychloroquine as part of their life-saving therapy,” the organizations stated in a press release.

“RA, lupus, and malaria are the only conditions for which these drugs are specifically approved by the FDA and they are the standard of care for tens of thousands of patients who depend on them to avoid disability, illness, and early death.”

Strategic Plan to Make Sure Patients Receive Chloroquine and Hydroxychloroquine

The organizations address five key points in their strategic plan:

• COVID-related restrictions. Pharmacies are limiting RA and lupus patients from obtaining these medications because they are being reserved for COVID-19 patients—in some cases, the medications are being rationed to hold onto them for future COVID-19 use. Not only does this affect patients’ access to their medicines; it also significantly burdens rheumatology and other practices that are also struggling to maintain all of their patients amid the epidemic. “We strongly oppose these restrictions and urge states and other stakeholders not to impose them, and to rescind such policies that have already been implemented. Instead, we support polices that specifically ensure access to [hydroxychloroquine] and [chloroquine] for [Food and Drug Administration] FDA approved indications (or for off-label uses supported by the scientific literature), without requiring these patients to take additional steps to obtain their prescriptions.”
• Stockpiling. According to the statement, hospitals, health systems, health plans, and providers are reportedly stockpiling excessive quantities of the drug: “While we recognize the urgent global need to have treatments for COVID-19 like [hydroxychloroquine] and [chloroquine] available for that use, we should not deny access to these medications for the people who already rely on them and for whom they are proven to work.”
• Quantity limits. Hydroxychloroquine prescription one- to two-week limits are affecting patients, including those with lupus and RA. This delays patients in receiving their necessary medication as well as increases their risk of COVID-19 exposure because they have to travel more often to obtain their prescriptions. “Exceptions to quantity limits should be made for patients with chronic diseases who take [hydroxychloroquine] as part of their regular course of care.”
• Off-label restrictions. While the organizations encourage medications be used appropriately per their FDA indications, they also recommend stakeholders allow for flexibility in treating diseases in cases when the literature supports use of the medication. In the case of hydroxychloroquine, patients with diseases including juvenile idiopathic arthritis, Sjogren’s Syndrome, sarcoidosis, Q fever, and porphyria cutanea tarda should still have access to their medication.
• Inappropriate and unreasonable prescribing. Physicians are reportedly self-prescribing hydroxychloroquine and chloroquine for their friends and family; many regions across the country do not have any prescribing limits. While the medications are being prescribed to potentially prevent COVID-19, the scientific literature does not support this use. “Such examples of unreasonable prescribing must be stopped in order to preserve the availability of the drug for currently approved uses, scientifically accepted uses and, potentially, for use to treat COVID-19,” the organizations stated.

The Lupus Foundation of America and Arthritis Foundation collectively concluded, “We are committed to doing our part to prevent the spread of COVID-19 and to supporting the search for treatments. However, as you and other stakeholders work to advance these common goals, we urge you to take action that preserves the ability of people with RA and lupus to access the medications they need to fight their disease.”