90% of people living with lupus are women, and women of color are two to three times more likely to develop the disease. These shortages have been catastrophic for people who have been unable to travel to larger pharmacies or pay out of pocket for drugs essential to their long-term health and survival. Within the Lupus Foundation of America Study, people reported having to “pay cash out of pocket” for refills, “get [their] refills out of state via friend/family networking”, and just “wait to refill due to $450 cost.”

Separately, it is clear that the risks of hydroxychloroquine as a treatment for COVID-19 far outweigh its potential benefits. The March study (cited by Trump) by French microbiologist Didier Raoult and his colleagues was small and non-randomized, leading the International Society of Antimicrobial Chemotherapy to officially express their concerns about the design and presumptive results. In addition, hydroxychloroquine can prolong the QT interval (a heart rhythm measure) and lead to fatal cardiac arrhythmia. When patients are given this in combination with azithromycin, there is a high risk of them developing serious changes in their heart rhythms.  

Even though the Food and Drug Administration (FDA) revoked their emergency-use authorization of hydroxychloroquine on June 15, the lupus and arthritis communities have not felt the effects of these shortages lightly. Thankfully, the FDA’s safety warning helped decrease the number of corona-related hydroxychloroquine fills across the US. During the past month, I’ve been able to get my medication without waiting too long, as have others with lupus. But, hydroxychloroquine is not the only medication that has been subject to shortages. Certain medications, such as sedatives like midazolam and propofol, are in greater demand because they are essential for patients on ventilators. The increased need is coupled with reduced production given measures taken to slow the spread of the virus worldwide. Compounding supply limitations across the global market, the United States (U.S.) also has significantly fewer generic drugs approved by the FDA than other countries. This not only exacerbates reduced drug availability, it also drives up cost. The Oregon Health and Science University and Mayo Clinic advocate for efficient authorization of generic drugs from outside the U.S. and a funding increase for nonprofit generic drug manufacturing to fix this problem during the current pandemic. These obstacles demonstrate that the scope of the COVID-19 public health crisis and its impacts on individuals, families, and communities go beyond those directly infected by the virus. Sharing the breadth of our experiences and perspectives raises awareness and helps each of us consider informed solutions.

“ Weekly prescriptions from February 16 to April 25, 2020, were compared with those from February 17 to April 27, 2019. Each date on the x-axis refers to the last day of the week. EUA indicates Emergency Use Authorization; FDA, Food and Drug Administration; and WHO, World Health Organization.”