Hello patient advocates! Dr. Angus Worthing, chair of the American College of Rheumatology’s Government Affairs Committee, here to catch you up on the #MedicareAccess Capitol Hill briefing we held in partnership with the National Psoriasis Foundation.

On June 25, I was joined by fellow rheumatology professionals and patients to discuss some of the Medicare access challenges the chronic disease community faces. Over the course of the briefing, we heard from two patient advocates – John and Kathleen – and my ACR colleague, Dr. Colin Edgerton.

The thoughtful testimonies from John and Kathleen helped highlight some of the roadblocks to accessing Medicare for people living with rheumatic diseases. During the briefing, the conversation regularly returned to the high cost of the biologic therapies patients need to manage their diseases. Additionally, the out-of-pocket costs associated with doctor appointments, tests, and medications make it difficult for patients like Kathleen and John to access the care they need.

Patient advocate Kathleen Gallant told the audience that her psoriasis treatment became prohibitively expensive after her psoriatic arthritis disabled her and left her with only a fixed Social Security income to live on. Similarly, John Earley, another patient advocate with NPF, worried that transitioning to Medicare from a private insurer would significantly increase his out-of-pocket costs and could force him off of a stable medication that has worked well  for more than a decade. Unfortunately, John and Kathleen’s stories are common and illustrate the current barriers to access Medicare patients can face.

In addition to the already-high cost of biologic drugs, Dr. Colin Edgerton raised the issue of pharmacy benefit managers (PBMs) having outsized influence over the prices that patients pay for the medicine that they need. “PBMs negotiate lower prices for insurance companies through a system of rebates, but those savings are often not passed on to the patients, so the costs remain high,” said Dr. Edgerton. In many cases, PBMs will instead pocket the savings, creating perverse incentives that only exacerbates the problem of high drug prices for patients.

Dr Colin Edgerton
















Additionally, I discussed the risks behind moving Medicare Part B drugs into Part D. Patients typically only expected to cover a small out of pocket cost for medications covered under Medicare Part B. Alternatively, under Part D, patients must navigate prior authorization, step therapy and price tiering. Moving biologics into Part D would increase the barriers for rheumatic disease patients trying to access treatment coverage under Medicare by raising their drug costs and delaying effective treatments.

In all, it was great to see so many people interested in improving the treatment landscape for patients with rheumatic diseases. Congressional staff welcomed the opportunity to learn more about how we care for patients with rheumatic diseases and how that care can be improved. While today’s event was great, it is important that Congress hears from you – the patients – in order to better understand the intricacies of the issue. Contact your Members of Congress today!

Dr. Angus Worthing