Medicare Denied the Only Drug That Worked for My Rare Disease. A Canadian Pharmacy Made It Affordable.
Living with a rare disease can at times feel like it totally consumes all of your time. Between medical appointments with numerous out-of-state specialists, managing prescription drugs, following up with doctors, lab tests, imaging, and then dealing with denial from the insurance company for the drug your doctors feel is the last resort for you – it is all so overwhelming, especially when you don’t feel well.
I was diagnosed with sarcoidosis in 2018. At first, it was just in my lungs and lymph nodes, but the disease eventually spread to my skin and heart. It has caused inflammation in my eyes, tendon damage, adrenal failure, osteopenia (due to long-term steroid use), and small fiber neuropathy. On top of that, it caused scarring in my lungs, which led to bronchiectasis and Mycobacterium avium complex and a long run of pneumonia in 2025.
There are currently no FDA-approved drugs for treating sarcoidosis. In 2024, after running through all of the off-label options for treating sarcoidosis – methotrexate, azathioprine, Remicade, Humira – all of which either worked for a while and then I developed antibodies or caused so many side effects I couldn’t continue, my doctors decided it was time to try a JAK inhibitor – either Xeljanz or Rinvoq.
Both were denied by my Medicare prescription drug plan.
I appealed the decision through the Medicare appeals process, only to discover that even if I took my battle to federal court, there would be little hope: Sarcoidosis was not listed as a medically acceptable indication for Xeljanz in the drug compendia used to determine Medicare coverage.
By this time, I am in the 2nd quarter of 2025 and not on any immunosuppressant. The cost of Xeljanz was around $7,000 for a 30-day supply.
That’s when I turned to a Canadian online pharmacy.
I began buying Xeljanz for around $1,500 for a 78-day supply. The medication came from Pfizer Turkey and was dispensed through pharmacies in different countries. This was also at the time when the Trump tariffs were causing backlogs and delaying deliveries for months.
Fast forward to now, and I am buying my Xeljanz – a Canadian-manufactured generic from a different international online pharmacy – and I just paid $1,100 for a 90-day supply plus a 24% tariff.
The good news is my disease is finally under control, and I am doing so much better on the Xeljanz than I have on any of the previous medications.
But my relief comes with a new worry.
I had imagined I would be on this drug for years to come. With new U.S. customs requirements for international mail scheduled to take effect on January 20, 2027, I am deeply concerned about whether I will continue to have access to the treatment that has finally given me my health back.
I am so worried about how I will be able to find affordable Xeljanz if importation of drugs from Canada for personal use ceases to exist. After years of illness, failed treatments, and fighting for coverage, I have finally found a medication that works. I shouldn't have to live in fear of losing access to it simply because the drug cost is prohibitive in the United States.
About Janet Mockovciak
Janet Mockovciak was diagnosed with sarcoidosis in her lungs and lymph nodes at the age of 62 in 2018. She lives in New Mexico, volunteering in the education and arts spaces, having helped start two non-profits and serving on various boards. She is the co-founder of Dallas Afterschool, which aims to increase children’s access to high-quality, extracurricular programs. She has served on the Foundation for Sarcoidosis Research’s Patient Advisory Committee and on National Jewish Health’s Council of National Trustees since 2021.
