Advocacy

FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.

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Advocacy

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.

Current Issues

New BRCA Genetic Screening Recommendations Miss the Mark

U.S. Preventive Services Task Force recommendations guide the use of many health screenings and determine which preventive services are available at no cost-sharing under the Affordable Care Act. In September 2019, the Task Force published new guidelines that slightly expand the population eligible for BRCA counseling and testing. While this change is positive, the guidelines fail to meet the needs of many Americans who may be at increased risk of cancer due to hereditary factors.

Fraud Alert! Genetic test scams are a growing problem.

September 27, 2019 - Federal law enforcement agencies recently charged 35 individuals for fraudulent genetic testing and Medicare billing practices. Scams are a growing problem. If you are considering DNA/genetic testing, there is important information that you should know first.

See this recent fraud alert issued by the Office of Inspector General and learn how you can protect yourself from fraud, misinformation, and harm.

Allergan Recalls Textured Breast Implants

July 24, 2019 - Today, the U.S. Food and Drug Administration (FDA) took action to protect women from breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) by requesting that Allergan, the manufacturer of a specific type of textured implant, recall certain models of its breast implants from the U.S. market.

Per the agency’s request, Allergan is recalling BIOCELL textured breast implant products.

Support Broader Access to Genetic Counseling

Genetic counselors provide crucial information and expertise to anyone impacted by hereditary cancer. But, did you know that these experts are not approved Medicare practitioners? The “Access to Genetic Counselor Services Act of 2019” (H.R. 3235) aims to remedy this issue. Join FORCE and the National Society of Genetic Counselors to support coverage of genetic counseling for Medicare beneficiaries and expanded access to genetic counseling services for all Americans.

New Legislative Effort Could Wipe Out Laws Preventing Gene Patents

June 2019 - Members of Congress recently released draft legislation to amend Sec. 101 of the Patent Act which permits issuing patents on new and useful processes, machines, etc. As currently written, this legislation is extremely concerning as it would establish a completely new patent eligibility framework and, as a result, would overturn significant Supreme Court decisions that have fostered affordable access to genetic tests including the AMP v. Myriad decision, which said that naturally occurring DNA sequences cannot be patented.

Lawsuit Targets Wellness Program Penalties and Invasion of Privacy

July 16, 2019 - A lawsuit filed against Yale claims that its wellness program imposes excessive penalties for nonparticipation or noncompliance, and infringes on employees' genetic/ health privacy. Employers are increasingly implementing wellness programs to counter rising healthcare costs, shifting more of the expense to workers despite limited evidence that these programs are effective. The vendors that administer these programs are not bound by laws that protect privacy and individual rights.

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.

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.

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming standard-of-care for many cancers and accounts for about a third of oncology drugs in development. Importantly, many oral anti-cancer medications do not have IV or injected alternatives. PARP inhibitors, especially effective in treating BRCA-related cancers, are just one example. These medications must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Ac t, federal legislation which strives to create equal insurance coverage of cancer treatments, regardless of how they are administered.

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