The Research to Accelerate Cures and Equity for Children Act (aka – the RACE Act) officially went into effect in August 2020, requiring studies and investigations involving products that treat adult cancer to also assess the use of those products in children. Pharmaceutical and biotechnology companies with oncology pipelines are no longer exempt from these assessments due to orphan drug status regardless of how rare the pediatric cancer may be. For the first time, industry stakeholders will be encountering the unique challenges within the childhood cancer research landscape, which are completely different from the familiar adult oncology landscape.
For many companies, this shift will be challenging. It is suspected that the patient advocacy organizations (PAOs) will be a tremendous resource to tap into during this transition. As such, PR Health Sciences, in collaboration with CureSearch for Children’s Cancer, developed a comprehensive whitepaper to explore these relationships and share examples of unique ways in which collaboration with PAOs can be a valuable strategy to ensure readiness for the RACE Act.
In one case study, the whitepaper explores the unique role of Cindy Campbell, Program Director at Weill Cornell Medicine’s Children’s Brain Tumor Project. Not only is she a patient advocate, but also a representative for academia. Her role at the Children’s Brain Tumor Project incorporates the patient perspective in everything they do, which was otherwise buried under many barriers. In order to systemically address the barriers and drive accelerated access to new therapies for children, the organization needed the bandwidth and unique skillset that a patient advocate brings to the table.
We invite you to read the whitepaper here.