Both The Myositis Association (TMA) and Myositis Support and Understanding (MSU) have been made aware of circumstances where patients across the United States have experienced difficulty in accessing commonly prescribed medications used in the treatment of autoimmune diseases since the overturn of Roe v. Wade on June 24, 2022. While barriers may vary from state to state, some patients have reported an inability to fill prescriptions for methotrexate and other needed medications.
TMA and MSU are patient advocacy organizationscommitted toadvocating for comprehensive access to quality healthcare services and medications on behalf of our patient community. Our organizations support access to and coverage of prescription medications that are vital for myositis patients. We agree with the American College of Rheumatology [www.rheumatology.org] that patients have a right to evidence-based care that is patient-centered and in the best interest of the individual seeking treatment. Additionally, because myositis is a rare disease, there is a general lack of affordable, well-tolerated, and effective treatments for the myositis community.
Many organizations have begun reporting the experiences of their chronic illness and autoimmune disease communities around this matter. We would like to better understand the experience of myositis patients, specifically. If you are someone struggling with access to medications such as methotrexate, biologics, or other prescriptions after recent changes, we would like to know.
Please reach out to us:
The Myositis Association tma@myositis.org
Myositis Support and Understanding contact@understandingmyositis.org
Please be assured, our organizations recognize the immense responsibility we carry in ensuring that the lives we touch are supported, and we will stand with you in advocacy throughout this changing time.
Before I retired, I had a broker come out and tell me which Medicare plan I needed. But now I find out that they have denied my Mycophenolate and Xeljanz XR. I also can’t afford the IVIG therapy. But my husband makes too much for any help. I am so frustrated and sick of spending everyday trying to figure out my insurance. I am sure this stress doesn’t help my necrotizing myositis. Thank you for letting me vent.