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

11/1/2019 - FORCE, along with hundreds of medical and patient advocacy orgs, expressed support for a long-term reauthorization of PCORI.

10/28/2019 - We authored comments on the FDA's draft industry guidance on developing drugs for the treatment of male breast cancer.

9/27/2019 - FORCE and two dozen groups urged CMS to reconsider the 14-day Rule, which has created delays in patients receiving test results.

9/24/2019 - Signed onto a letter urging the President to waive out-of-pocket costs for seniors on Medicare who have precancerous polyps removed during a screening colonoscopy.

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

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.

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. 

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

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