PIRC Members Collaborate on Educating CMS About a Rare Cancer Drug in Round II of IRA Negotiations

A treatment for mantel cell and CLL/SLL is on this year’s list of IRA negotiations. As we did last year, PIRC submitted comments to CMS in response to the agency’s request for patient and provider perspectives ahead of their negotiations. Not only did we focus on treatment paradigms unique to cancer, especially rare cancers, we outlined our collective patient-focused experience included our unique journey as rare cancer patients, from diagnosis to disease progression and treatment options, as well as our treatment preferences, and the ongoing unmet needs of our community. As a rare cancer community, we also asked CMS to solicit and consider patient information that reflects the whole patient, including quality of life impacts, factors such as drug toxicity and side effect profiles, and more.