A New Haystack Project Initiative

what is the RCPC? Learn More Here.

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.

Participants

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New NCCN Guidelines Analyze Evidence for Cancer Type Found Almost Exclusively in Children
New NCCN Guidelines Analyze Evidence for Cancer Type Found Almost Exclusively in Children

The National Comprehensive Cancer Network® (NCCN®) today published its first-ever treatment guidelines for children with a solid tumor cancer type in the United States. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Wilms Tumor (Nephroblastoma) contain evidence-based expert consensus recommendations for how to maximize benefits and minimize side effects for managing a rare type of kidney cancer that typically occurs in children age eight years or younger. These guidelines contain crucial information, particularly for care providers who treat a full spectrum of pediatric tumors, hematologic malignancies, and other blood disorders (such as sickle cell), due to the relative infrequency of all of these conditions. The guidelines also include important diagnostic information for primary care pediatricians to help ensure this cancer is caught early enough to benefit from high curability rates, and managed in a way that reduces side effects.