Protecting Innovation in Rare Cancers (PIRC) Coalition

PIRC seeks to unite patients, caregivers, healthcare providers, researchers, industry representatives, and other relevant stakeholders to foster collaboration and promote evidence-based policy decisions. By amplifying the voices of those affected by rare cancers and combining their collective expertise, the coalition will work toward raising awareness, advocating for policy changes, and shaping regulations that prioritize the needs of the rare cancer community.

• Two of the top 5 medical conditions with the highest share of enrollees reaching the catastrophic coverage phase are rare blood cancers: multiple myeloma including other neoplastic disorders and chronic myeloid leukemia.  The IRA includes a provision eliminating patient out-of-pocket costs in the catastrophic phase in 2024. *
• Seven of the top 10 drugs taken by 10,000 or more enrollees with the highest average out-of-pocket spending were for oncology, which highlights the cost burden of cancer for Medicare enrollees. *
• This is consistent with existing research that finds a large share of out-of-pocket financial burden is due to cancer treatment, with oncology drugs making up over half of total Part B drug spending in 2021

*Assistant Secretary for Planning and Evaluation, Office of Health Policy, Research Report, July 7, 2023.