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

7/26/2019
FORCE is supporting legislation (H.R. 4078) to reauthorize and increase funding for the Breast Cancer Education and Awareness Requires Learning Young Act (EARLY) Act.

6/27/2019
We played a lead role in drafting coalition comments on the FDA's proposed mammography guideline updates.

6/21/2019
FORCE recommendations regarding genomics were accepted and will be integrated into the Healthy People 2030 objectives.

6/3/2019
Today, the FDA announced a new pilot program called Project Facilitate to assist oncologists in requesting access to unapproved therapies for cancer patients. 

5/7/2019
We signed onto coalition letters to the House and Senate regarding FY20 funding for the Defense Health Research programs. 

Advocacy Accomplishments

Screening & Prevention

Insurance Coverage of Annual Screening Mammograms

In early 2016 the U.S. Preventive Services Task Force (USPSTF) released new breast cancer screening guidelines which recommended raising the minimum age for annual screening mammograms for “average risk” women to 50. If implemented, women between the ages of 40 and 49 would likely lose access to yearly breast screening mammography. FORCE was a leader in efforts to curtail the proposed guidelines, preserving 100% insurance coverage of this lifesaving cancer screening for all women starting at age 40.

Insurance Coverage & Barriers

Medicare Regions Expand Coverage of Genetic Services

In 2015, four Medicare Area Contractors (MACs) approved Local Coverage Determinations (LCDs) that better align their services with NCCN guidelines in a number of areas such as expanding coverage of genetic testing for individuals who have or had cancer consistent with hereditary cancer syndromes, including men and those affected by prostate and pancreatic cancer; coverage of multigene genetic tests panels if more than one mutation may be indicated; and clarification of the BRCA testing policy for use of the targeted cancer therapy, Lynparza. 

Treatments & Therapies

FDA Approves First PARP Inhibitor: A Win for the BRCA Community

On December 19, 2014, the FDA announced approval of Lynparza (also known as olaparib) for women with BRCA mutations who have ovarian, fallopian tube or primary peritoneal cancer, and who have received three or more chemotherapy treatments. FORCE has been a strong advocate for PARP inhibitor research and targeted therapies for nearly a decade. This is the first FDA-approved PARP inhibitor, and it is a great win for the BRCA community. 

Genetic Testing & Counseling

Supreme Court Rules Gene Patents Unlawful

On June 13, 2013, in a highly-publicized AMP v. Myriad Genetics case, the U.S. Supreme Court unanimously ruled that the patents on the BRCA1 and BRCA2 genes were invalid. This landmark decision was the culmination of an ongoing legal battle between Myriad Genetics and the ACLU on behalf of the Association for Molecular Pathology (AMP). FORCE strongly supported the stance that gene patents negatively affected research and access to care. We filed an amicus brief in support of the ACLU in addition to providing testimony to the U.S. Patent and Trademark Office about the burden that gene patents placed on members of the hereditary cancer community.

Hereditary Cancer Awareness

Establishment of National HBOC Week and Previvor Day

FORCE made history in 2010 with the successful passage of a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day. FORCE is proud to have spearheaded this initiative to bring attention to HBOC syndromes and to recognize their impact on the families affected.

Insurance Coverage & Barriers

Passage of the Genetic Information Nondiscrimination Act (GINA)

In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect individuals from genetic discrimination in health care and employment. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF).  FORCE was an active member of this coalition beginning in 1999, the year FORCE was established.  

FORCE:Facing Our Risk of Cancer Empowered