FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.
I see, and am grateful for, the work that FORCE does on a daily basis. It positively impacts the lives of millions.
The FDA's Prescription Drug User Fee Act (PDUFA) authorized the FDA to choose 20 different disease areas for concentration to expedite drug development and review. The FDA chose breast cancer as one of the disease areas, and they will be holding a meeting on April 2, 2015 to gather patients' perspectives. Read more...
In June 2013, the US Supreme Court invalidated Myriad's patents on the BRCA1 and BRCA2 genes. Since then, a number of laboratories began offering genetic tests for BRCA mutations. Myriad filed suit against most of these companies, alleging that their BRCA tests infringe on patents not invalidated by the Supreme Court decision. Myriad asked the court to block Ambry and Gene by Gene from BRCA testing until the patent infringement case is resolved. Read more...
The United States Preventive Services Task Force (USPSTF) posted new screening guidelines for prostate cancer in May 2012. FORCE issued a position statement and submitted suggestions to the draft guidelines. The USPSTF responded to our input and made changes to their final guideline statement. Read more...
On September 15th, 2010, in a unanimous show of support, the House of Representatives voted in favor of a House Resolution sponsored by Rep. Wasserman Schultz (FL-20) to designate the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of the month as National Previvor Day. Read the text of the resolution and View the list of representatives who voted on H Res #1522.
The United States Preventive Services Task Force (USPSTF) recommended changes to the screening guidelines for breast cancer in late 2009. The task force: Recommended against screening mammography for women ages 40–49; Recommended screening mammography in women older than 50 be performed biennially rather than annually and Recommended against teaching or performing Breast Self-Exam (BSE) at any age. FORCE issued a position statement opposing these guideline changes, which included a petition to support mammography and breast self-exam education for women.
The Breast Cancer Education and Awareness Requires Learning Young Act of 2009 (EARLY Act), HR 1740, was introduced by Representative Wasserman Schultz (D-FL), a breast cancer survivor who carries a BRCA2 mutation. FORCE participated in a coalition of groups providing guidance on the proposed legislation. Passed as part of the Patient Protection and Affordable Care Act in March 2010, the EARLY Act authorizes a nationwide awareness and support campaign for women age 45 and under, including high-risk women, breast cancer survivors, and their doctors. The law also includes broad-reaching public and healthcare professional education campaigns, prevention research, and additional support for young women diagnosed with breast cancer. Funded through 2014, efforts to renew this important legislation are currently underway. For more information, visit the EARLY Act website.
In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF). FORCE was part of this coalition from 1999 on. This law is designed to prohibit the use of genetic information in health insurance and employment. It prohibits group health plans and insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. Initially, the Coalition consisted of civil rights, disease-specific, and healthcare organizations, but in 2005 the CGF expanded to include industry groups and employers, uniting more than 500 organizations and thousands of individuals as one voice against genetic discrimination. The law currently does not protect individuals from discrimination in life, disability or long-term care insurance. For more information, visit NIH’s National Human Genome Research Institute.
On October 9th, 2009, a FORCE representative appeared before the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) to testify on behalf of the HBOC community about the harmful effects of direct-to-consumer marketing of genetic tests on our community. Download a copy of our comments.