Catharine Young, Executive Director of the Shepherd Foundation (Alexandria, VA) visits with us to give history and background to the Cancer Patient Equity Act of 2021, H. R. 5377, newly introduced to the US House of Representatives. With a focus on equity for patients with rare cancers, which comprise a whopping 95% of cancer diagnoses in the United States, the Shepherd Foundation has created a campaign to unite the public and Congress around this idea of equity in diagnostics and access to viable treatments. For too long, the childhood cancer community has suffered under the tyranny of semantics and the use of the word “RARE.” All childhood cancers are considered rare diseases and the qualifier rare has been overused to the point of threatening needed consideration for our children with the false idea of irrelevance, a consistent tool of the corporate world to justify the lack of investment into cures for childhood cancers.
The Cancer Patient Equity Act has two primary components; 1, to ensure patient access to the latest diagnostic tools–molecular diagnostics, to be provided by Medicare, Medicaid, and CHIP; and 2, an educational program designed and implemented for physicians and the general public on what genomic testing is, how it can be used, and the role of genetic counselors.
