Protecting Innovation in Rare Cancers (PIRC) Coalition

Recognizing the need for a collective voice to represent the broader rare cancer community, PIRC will work tirelessly to safeguard access to innovative treatments for patients and families affected by rare cancers.

The Protecting Innovation in Rare Cancers (PIRC) Coalition is a collaborative, multi-stakeholder, patient advocacy group that aims to implement the ‘wins’ achieved by CLL Society and others in the cancer community to reduce out-of-pocket costs while addressing growing concerns surrounding the implementation of the Inflation Reduction Act (IRA) by the Centers for Medicare & Medicaid Services (CMS).

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.

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. 

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