Advocacy

FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.

Advocacy > Advocacy Accomplishments

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Newsflash

1/31/2019
FORCE spearheaded a stakeholder letter to HHS and CMS expressing concern about interpretation of a national policy which places significant limits on hereditary cancer genetic testing in the Medicare population.

1/17/2019
FORCE joined 50 other orgs in an advertising campaign to stop the proposed changes to Medicare Part D’s Six Protected Classes.

1/16/2019
We submitted comments on the Healthy People 2030 initiative asking that genomics goals are incorporated into the plan.

12/31/2018
As a Friends of the Cancer Policy Institute member, FORCE provided comments on the International Pricing Index (IPI) Model for Medicare Part B Drugs.

12/20/2018
Success! The EEOC removed the GINA regulations section allowing incentives/penalties to provide personal health information as part of an employer-sponsored wellness program.

 

Supreme Court Rules Gene Patents Unlawful

Genetic Testing & Counseling

In 2009, the American Civil Liberties Union (ACLU) filed a lawsuit challenging Myriad Genetics’ patents on the BRCA genes. On April 15, 2013 the U.S. Supreme Court heard oral arguments, and ultimately ruled that the patents on the BRCA1 and BRCA2 genes were invalid. This landmark ruling represented the culmination of the legal tug-of-war between Myriad and the plaintiffs, including the ACLU as well as individual, advocacy, and health care professional groups. FORCE agreed that exclusive gene patents had negative effects on the scientific, medical and patient communities, and filed an Amicus (Friend of the Court) brief on behalf of the plaintiffs. In addition, FORCE testified before the U.S. Patent and Trademark Office and served an an expert witness on how the exclusive BRCA gene patents influenced research and access to care. 

The abolishment of gene patents has fostered competition and substantial growth in the genetic and genomic testing marketplace. Costs for genetic testing have plunged while the growth of multigene panel tests has accelerated quickly enabling the identification of individuals who carry not only BRCA mutations, but also many "new" genetic mutations which cause increased risk of breast, ovarian, and related cancers. In addition to allowing more high-risk individuals to be proactive with their health, the new landscape is fostering a more personalized approach to cancer treatment with the development of therapies that target tumors based on their unique biology.  

FORCE:Facing Our Risk of Cancer Empowered