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 Issues

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Newsflash

5/9/18
We joined 80 patient advocacy, medical, and industry orgs in urging Congress to enact legislation to modernize FDA oversight of clinical laboratory diagnostics. Read letter...

4/17/18
FORCE and over 100 patient and professional health orgs reached out to Congressional leaders to oppose expansion of short-term health insurance plans. Read letter...

4/12/18
FDA finalizes guidances to accelerate development of reliable, beneficial next generation sequencing-based tests. Read press release...

4/9/2018
FORCE joined other organizations in urging Utah to clarify and protect coverage of breast reconstruction after cancer for its Medicaid recipients. Read more...

2/27/2018
FORCE, along with over 100 other organizations, is advocating for continued funding of DoD research programs. Read our letter to Congressional leaders.

 

Screening & Prevention

A number of government agencies and professional societies publish screening and prevention guidelines for people at high risk of cancer. The standard of care for individuals at risk of hereditary cancers includes genetic counseling and testing, increased screening, chemoprevention and/or risk-reducing surgeries. FORCE tracks and influences these guidelines as appropriate and provides the most current information about the recommended services and interventions.

Screening & Prevention

Breast Mammograms for Women Under Age 50 Preserved

Annual mammograms for women age 40 and over are protected for another year. In 2016, the U.S. Preventive Services Task Force (USPSTF) released new breast cancer screening guidelines recommending that the minimum age for annual screening mammograms for “average risk” women be raised to 50. If implemented, women ages 40-49 would likely lose access to yearly screening mammograms. FORCE continues to be a leader in efforts to preserve 100% insurance coverage of this lifesaving cancer screening for all women who are not known to be high-risk starting at age 40.

Treatments & Therapies

Cancer Research Funding Preserved

Federal funding for cancer research has led to significant advances in cancer prevention, detection, diagnosis, treatment, and quality of life for patients. More than 14 million U.S. cancer survivors are alive today, largely because of the nation’s commitment to cancer research. The main sources of U.S. cancer research funding are the National Institutes of Health (NIH), which includes the National Cancer Institute (NCI), and the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). FORCE was involved in recent efforts to preserve or increase funding for these crucial programs. 

Insurance Coverage & Barriers

Executive Actions Pose New Challenges for U.S. Health Care

On October 12, President Trump issued an executive order which could undermine the individual and small group health insurance markets. The order would allow “junk” association and short-term health plans. The same day, the White House announced plans to halt cost-sharing reduction payments (CSRs) which help health insurance companies offset out-of-pocket medical costs for low-income enrollees, keeping coverage affordable. In essence, without changing or repealing the Affordable Care Act, these actions authorize federal agencies to modify regulations so that more health plans will be exempt from some of its core requirements. 

Insurance Coverage & Barriers

Senate Drops ACA Repeal Effort

A bill introduced in the Senate—referred to as the Graham-Cassidy plan—briefly gained momentum but was dropped when it couldn't garner enough support for passage. Facing a deadline of September 30, 2017, to pass legislation with a simple majority vote, the bill drew criticism from patient advocacy groups, medical societies, and others. The revised ACA repeal plan would have given states broad waiver authority to eliminate ore protections for people with preexisting health conditions. These waivers would have come on top of the proposal’s elimination of ACA marketplace subsidies and Medicaid expansion, radical restructuring of the rest of the Medicaid program, and large cuts to total federal funding for health insurance coverage.

Screening & Prevention

FORCE Weighs In on Prostate Cancer Screening Guidelines

In May 2017, FORCE submitted comments on the USPSTF Draft Recommendation Statement and Evidence Review for Prostate Cancer Screening. Once finalized, these guidelines are utilized by health care providers to determine appropriate screening and care, and to inform insurance coverage decisions on specific preventive services. The Affordable Care Act stipulates that any preventive service receiving a USPSTF rating of “A” or “B” must be covered by most health plans with no copay or cost-sharing for the patient. Consequently, these guidelines impact access to care for members of the hereditary cancer community.

Screening & Prevention

Ovarian Cancer Screening for High-Risk Women

Ovarian cancer accounts for more deaths than any other cancer of the female reproductive system. An estimated 20% of these cancers are due to hereditary factors such as a BRCA genetic mutation. Women with inherited predispositions face greatly increased risk of this, and possibly other cancers. A number of tests have been evaluated as screening methods for early stage ovarian cancer but none have proven reliable. In September 2016, the FDA released a Safety Communication recommending against the use of ovarian cancer screening tests. FORCE responded with a letter to the FDA and an official statement on the issue.

Screening & Prevention

Precision Medicine Initiative

Precision medicine is an emerging approach for disease prevention and treatment that takes people's individual variations in genes, environment, and lifestyle into account. The Precision Medicine Initiative® (PMI) aims to generate the scientific evidence needed to move the concept of precision medicine into clinical practice. Individuals with or at increased risk of heredtiary cancer are ideal candidates for the practice of precision medcine, also known as personalized medicine. FORCE has been engaged in a number of PMI meetings and strategy sessions to help frame this immense effort.

Screening & Prevention

FORCE Weighs In on SCOTUS Oral Contraception Cases

In March 2014, the U.S. Supreme Court heard two cases about birth control coverage under the Affordable Care Act (ACA). ACA mandates coverage of several preventative services with no cost sharing, one of which is birth control. In these cases, the companies asserted that the mandate infringes on their religious rights under the Religious Freedom Restoration Act. This is a women's health issue for our community, as oral contraceptives have been shown to reduce the risk of ovarian cancer. FORCE joined the Ovarian Cancer National Alliance and others in submitting an amicus brief on this issue. 

Screening & Prevention

PSA Screening Guidelines Fall Short: High-Risk Men have Unique Needs

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 Task Force regarding the draft guidelines. The USPSTF responded to our concerns about high-risk men and made changes to its final guidelines. 

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