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


Newsflash

9/3/2019
We joined over 50 orgs representing millions of patients, advocates, caregivers, researchers, and physicians to express support for appointment of Norman Sharpless as FDA Commissioner.

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.

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

Mammograms for Women Age 40-49 Preserved Through 2019

In 2016, the U.S. Preventive Services Task Force released new breast cancer screening guidelines recommending that mammograms for “average risk” women begin at age 50. If implemented, women ages 40-49 may lose access to no-cost annual screening mammograms. FORCE supported passage of the PALS Act to preserve mammograms with no out-of-pocket costs for women starting at age 40 and continues to be a leader in efforts to preserve 100% insurance coverage of this lifesaving cancer screening.

Insurance Coverage & Barriers

High-Risk Individuals Often Struggle to Get Insurance Coverage of Health Services

The ACA guarantees coverage of certain cancer screenings at no cost to the patient. This has allowed many Americans to access care that they might not otherwise be able to afford. As some impacted by hereditary cancer have learned, however, insurers are not required to cover screenings beyond those mandated in the ACA. Members of our community often struggle to get coverage for earlier, more intensive screenings and risk-reducing surgeries. This is why FORCE created sample appeal letters for a variety of services.

Insurance Coverage & Barriers

ACA unconstitutional? What does this mean for preventive care and pre-existing conditions?

On December 14, 2018, a Texas district court judge ruled that the Affordable Care Act (ACA) is unconstitutional due to a recent change in federal tax law. As part of the 2017 tax reform package, the ACA was amended to eliminate the penalty for not having health insurance. A lawsuit argued, “Once the heart of the ACA—the individual mandate—is declared unconstitutional, the remainder of the ACA must also fall.” The judge agreed.

Insurance Coverage & Barriers

Two Legal Challenges Take Forefront in Health Care Debate

Congress was on recess during the month of August but the legal jockeying around health care reform has continued. On August 2, a coalition of cities filed a federal lawsuit against the President and officials at the Department of Health and Human Services (HHS), alleging that the Administration has “intentionally and unconstitutionally” sabotaged the Affordable Care Act (ACA). The plaintiffs claim that the Administration has purposely tried to undermine or dismantle the law, even though Congress has kept the vast majority of the ACA intact.

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, 2018, 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. 

Screening & Prevention

Prostate Cancer Screening Guidelines Fall Short

In May 2017, FORCE submitted comments on the USPSTF Draft Recommendation Statement and Evidence Review for Prostate Cancer Screening. Finalized in May 2018, 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

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

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.

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FORCE:Facing Our Risk of Cancer Empowered