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


Newsflash

4/8/2019
FORCE submitted a letter of support for Texas legislation that would mandate coverage of fertility preservation prior to cancer-related surgery or treatment.

3/21/2019
FORCE, with over 300 organizations and institutions, is supporting the Ad Hoc Group’s FY2020 recommendation of at least $41.6 billion in funding for the NIH.

3/19/2019
We signed onto a letter to Rep. Debbie Wasserman Schultz thanking her for her leadership on the PALS Act, preserving mammograms for women ages 40-49.

3/18/2019
FORCE, joined by interested orgs, submitted extensive 
comments
on the USPSTF draft guidelines on BRCA counseling and testing. 

2/19/2019
FORCE and a group of 20 stakeholders met with Medicare to urge continued coverage of genetic testing for all cancer survivors who meet guidelines. 

2/15/2019
The government funding bill President Trump signed into law today contained language directing the FDA to ensure breast density information is included in mammography reports.

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 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. 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