A rheumatologist’s perspective on the community impact of hydroxychloroquine shortages



It was mid-March when I first found myself spelling H-Y-D-R-O-X-Y-C-H-L-O-R-O-Q-U-I-N-E for an insurance authorization. As common as the authorization process is for other rheumatology medications, hydroxychloroquine is rarely one of them. The shift began when early studies out of China suggested hydroxychloroquine, also called Plaquenil, as a medication for pneumonia caused by SARS-CoV-2 (COVID-19). Hydroxychloroquine, a long-standing staple in the treatment of systemic lupus erythematosus (SLE), was now in high demand. The demand for hydroxychloroquine would be propelled with media announcements labeling the treatment as a “game changer” for COVID-19 management.

Anxiety rose in the lupus community as new data surfaced that COVID-19–positive patients treated with hydroxychloroquine were experiencing significant side effects. The one medication I would typically describe as low risk was suddenly high risk. Before the pandemic, my conversation with a patient on starting hydroxychloroquine would be simple. I would discuss the benefits of being on a treatment that could potentially reduce damaging lupus flares. I would highlight the chance for better controlled symptoms, including joint pain and rash once the medication was therapeutic. In discussing possible side effects while taking this medication, I explained that we monitor for the rare risk of retinal toxicity; I quoted studies suggesting it occurs in <1% for those who use hydroxychloroquine for up to 5 years and <2% for those who use it for 5-10 years (Ophthalmology. 2016;123[6]:1386-94).

As media coverage of the issue heightened and patient access to the medication dropped, hydroxychloroquine anxiety reached new levels. During the months of March-May, a survey showed that, of the almost 90% of patients who reported taking hydroxychloroquine to manage their SLE, over half had issues refilling their prescriptions. Patients’ experiences began with their local pharmacy being unable to refill the medication, and then frantic calling and visiting of multiple pharmacies that were also out.

Dr. Micaela Bayard

My community of lupus patients began to voice a multitude of fears. Would countries stockpile the drug until the limited resources became nil? Should I space out my medication to make it last? How reliable were online and international sources of the medication? And if I do get my prescription filled, should I take it? Would taking it lead to fatal arrhythmias?

In my office, the hydroxychloroquine shortage was just the tipping point of anxiety. As the number of positive COVID-19 cases rapidly expanded, especially in Queens, uncertainty of what coronavirus meant for immunocompromised individuals was the topic of every visit. I would receive countless calls and messages to discuss how patients should proceed. The knowledge of living with an autoimmune disease and being on immune-suppressing medications was now compounded by the anxiety of not having access to a core treatment, and additionally, the fear of scary side effects like ventricular arrhythmias in the news.

The most difficult part as a health care provider was providing reassurance in this time of great uncertainty. After being diagnosed with lupus, a central part of the discussion is education focused on the risk for infection. We discuss the importance of getting influenza vaccines yearly and screening for infections like tuberculosis and hepatitis when they start strong immunosuppressants. The reassurance I could provide before now was complicated by new difficulties in distinguishing between COVID-19 symptoms and active SLE. I had never treated COVID-19 before and the reality of the unknown landscape of COVID-19 was causing increasing anxiety for my patients. I quickly shifted many of my support forums to online to reach the community on topics of stress and anxiety management.

I have many patients who were able to access excellent care, and telemedicine played a huge role in allowing assessment of symptoms while avoiding potential COVID-19 exposures. Many patients with a minor cough, muscle pain, limited fever, and/or new loss of taste or smell were able to self-monitor outside of health care facilities. Unfortunately, for some patients their symptoms were not minor.

I remember getting a message through the call service late on a Friday in April. For one of my patients with SLE, significant shortness of breath brought her into the ED at the height of the pandemic. At baseline, she struggled with many active manifestations of her lupus: kidney problems, low cell counts, rash, and joint pain. She had just begun the recovery process for surgery on a leaky valve that was causing breathing difficulty, and in addition to recovery, she was now tasked with going to many local pharmacies to find available hydroxychloroquine. When she began to have recurrent breathing symptoms she feared her new symptoms were COVID-19 related. She reached out to have a telemedicine consult and was counseled to seek further care in the hospital, given her worsening respiratory symptoms.

Her story is not unique to this pandemic; entering the hospital was a necessary reality for many lupus patients who needed face-to-face evaluations by a health care provider. But these evaluations should never have been triggered by poor medication access, potentially exposing them to SARS-CoV-2 infection. Luckily, many of my patients have now been able to stay in quarantine and are able to obtain hydroxychloroquine without difficulty. Thanks to the efforts of lupus advocacy groups and physicians, now hydroxychloroquine is only available for restricted diagnoses in the United States, one of which is SLE.

Overall, this pandemic should be a lesson for us as we seek new treatments for COVID-19. The push to use a medication off label without supporting data created unforeseen fears and real complications for an already high-risk population. Many of them were forced to leave the comfort of their quarantine spaces to confront pharmacies and health care providers about their lack of medication. As numbers fluctuate and we prepare for the potential of a resurgence, we must remember that large communities are reliant on many of the drugs being tested and the media messages we broadcast can have real repercussions on a patient’s health.

Dr. Bayard is a practicing rheumatologist and an assistant professor of medicine at the Icahn School of Medicine at Mount Sinai, New York, where she teaches second year medical students. She founded and runs a lupus support group for her patients in the Queens community. Follow her on Instagram @thelupusdoc. She has no relevant disclosures to report.