In 2018 Oneinforty established the Prevent Hereditary Cancer Coalition (PHCC). We are a diverse group of organizations and individual leaders from around the world committed to health care policy and practice reform that leads to the prevention of cancers caused by inherited gene mutations.
PHCC Member Individuals
Elizabeth Etkin-Kramer, MD, FACOG
Ephrat Levy-Lahad, MD
Ranjit Manchanda, MD, MRCOG, PhD
Jill Stopfer, MS, LGC
Patricia Clark, MD
Danielle Shiller, DO
Robin Straus Furlong, MD
Kimberly DeLeonardis, MS, LGC
In April of 2019, Oneinforty submitted this evidence-based request to the National Comprehensive Cancer Network (NCCN) imploring NCCN to expand its Genetic/Familial High-Risk Assessment: Breast and Ovarian Cancer clinical practice guideline to recommend that all men and women who have at least one Eastern European Jewish (i.e., Ashkenazi) grandparent be screened for BRCA gene mutations, regardless of known family history of the BRCA cancers. This modification to NCCN's guideline would save countless lives, as research shows that about half of the people who have a BRCA gene mutation have no known family history of the associated cancers.
In December of 2019, NCCN renamed the aforementioned guideline Genetic/Familial High-Risk Assessment: Breast, Ovarian and Pancreatic, expanding it to include people with Ashkenazi Jewish heritage, but no known family history of the BRCA cancers with these stipulations:
"Testing for the three funder mutations of BRCA1/2 may be offered to unaffected men and women as early as age 18-25 years, who have one grandparent identified as of Ashkenazi Jewish ancestry, irrespective of cancer history in the family, as part longitudinal studies. For those without access to longitudinal studies, testing may be provided if there is access to pre-test education along with post-test counseling, additional genetic testing if indicated, and high-risk management."
Oneinforty Founder & Executive Director Lauren Corduck presented on this topic at the 2018 NCCN Patient Advocacy Summit in Washington, DC. The theme of the Summit was Advocating for Equity in Cancer Care. Here's a film of her presentation: