The Rare Cancer Policy Coalition (RCPC) is a Haystack Project initiative that brings together rare cancer patient organizations. RCPC gives participants a platform for focusing specifically on systemic reimbursement barriers and emerging landscape changes that impact new product development and treatment access for rare cancer patients. It is the only rare cancer coalition developed just to focus attention on reimbursement, access and value issues across the rare cancer community. Working within the Haystack Project enables RCPC participants and rare and ultra-rare patient advocates to leverage synergies and common goals to optimize advocacy in disease states where unmet need is high and treatment inadequacies can be catastrophic.
The National Cancer Institute defines a rare cancer as one that occurs in fewer than 15 out of 100,000 people per year. Rare cancers are often associated with poorer outcomes, and large disparities in incidence and mortality rates for certain types have been documented. There are numerous challenges to studying rare cancers, and large gaps in knowledge related to the prevention, diagnosis, and treatment of many types of rare cancers. In spite of these barriers, treatments do come to market. And when they do, these same barriers have implications for any evaluations of their value to patients. Stakeholders must be very careful in determining value for patients rather than with patients. There is also little evidence to support any public and private payer barriers to patients accessing these long awaited treatment options.