We want to let you know that the FDA was very responsive to our letter regarding the drug shortage and wrote back that they were actively working on the supply shortage. They understand that patients are having challenges and they feel that in a few weeks, with a massive ramp-up of production, we will see a release of more supply. The Foundation truly thanks Dr. Janet Woodcock from the FDA for her support. As she is a former rheumatologist, she fully understands the needs of Sjögren’s patients.
In concert with our own outreach, the Foundation has also joined with the American College of Rheumatology to reach out to all state governors, insurance commissioners and boards of pharmacy to enlighten them on the shortage issue. The goal is to work towards increasing supply of hydroxychloroquine, ensure no price gauging happens as well as ensure that refills for current autoimmune patients is a top priority.
The Foundation also heard from the U.S. President of Novartis Pharmaceuticals, one of the makers of Plaquenil. They announced that they are increasing production and donating 130 million doses of hydroxychloroquine to the COVID-19 response, so as to free up other supply for autoimmune disease patients. Thanks to our relationship with PhRMA (Pharmaceutical Researchers & Manufacturers of America), the Foundation is in contact with other makers of Plaquenil, to ensure they understand the urgency of the supply shortage.
And finally, the Foundation has also reached out to Kaiser Permanente in California, where they have been denying refills for the drug and “thanking our patients for their sacrifice.” This is unacceptable and the Foundation will continue to fight for our patient population.
Please stay tuned for more updates and continue to send any shortages you experience to the FDA at DRUGSHORTAGES [at] fda [dot] hhs [dot] gov (DRUGSHORTAGES[at]fda[dot]hhs[dot]gov)
Together, we will conquer the complexities of Sjögren’s!