Advocacy

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

Advocacy > Current Issues


Newsflash

8/19/2020
FORCE joined Medicare stakeholders and advocacy groups in calling for copay assistance for Part D beneficiaries in response to the COVID pandemic pressures.

8/14/2020
Asked HHS Secretary Azar to consider policies that increase access to anti- cancer therapies while implementing the President's executive order on Improving Rural Health and Telehealth Access.

7/31/2020
Urged Medicare to allow use of non-invasive colorectal cancer screening test options in light of COVID; and, if a follow-up colonoscopy is needed, that it is covered with no cost-sharing for the patient.

7/20/2020
Joined 100+ patient and health care orgs to oppose a proposed Medicaid Rule that erodes prescription copay coupon assistance programs, a lifeline for people who depend on this aid for their medicines, and their health and well-being.

Current Issues

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Screening & Prevention

FDA Updates Breast Implant Safety Info, Releases Educational Video

August 24, 2020 – This week, the FDA provided an update on adverse events related to breast implants, including breast implant-associated anaplastic large cell lymphoma (BIA-ALCL), and systemic signs and symptoms referred to as breast implant illness (BII). The agency also announced approval of the BREAST-Q Reconstruction Module, a tool to collect pre- and post-surgery information from women having implant-based breast reconstruction, and released a video, 7 Key Things You Should Know about Breast Implants.

Insurance Coverage & Barriers

FORCE Fights for Our Community, COVID Relief

July 29, 2020 - The coronavirus pandemic has touched all aspects of American life, from education and employment to travel, hobbies and health care. Here at FORCE, we understand the unique challenges of the hereditary cancer community--survivors and previvors--and have been working tirelessly to help address those needs. In addition to moving our support and educational programs to virtual formats, we have been very active in advocating for policies that provide relief.

Genetic Privacy & Protection

Florida Enacts Sweeping Genetic Protection Law

July 1, 2020 - Florida just became first state in the U.S. to enact a law that protects genetic information from life, long-term care and disability insurers, which are exempt from the national protections provided by the GINA. The new law says that insurers cannot ask for genetic information or use genetic test results in any way. Even if genetic information is shared, the insurers cannot deny, limit or cancel insurance coverage, or set different premiums based on genetic information or DNA.

Screening & Prevention

Take Action: Preserve Breast Screenings for Women Ages 40-49

Hereditary cancers are often diagnosed at younger ages and are more aggressive than cancers in the average-risk population. Earlier screening is needed for women with inherited genetic mutations associated with increased cancer risk, Black women and women who were treated with radiation therapy for cancer as a child or young adult. This is why we are asking that you join us in supporting the reauthorization of two important laws—the PALS Act and the EARLY Act.

Genetic Testing & Counseling

Act Now to 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” (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.

Genetic Testing & Counseling

Medicare Finalizes Genetic Testing Policy

January 27, 2020 - Today, the Centers for Medicare and Medicaid Services released its final National Coverage Determination (NCD) on next-generation sequencing (NGS) for people with Medicare. The policy paves the way for national coverage of tumor/biomarker testing and multigene panel testing for hereditary cancer under specific circumstances. It also allows for local Medicare regions to establish policies for NGS-based testing for hereditary cancer mutations.

Genetic Testing & Counseling

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 to patients at no cost under the ACA. In September 2019, the Task Force published new guidelines that slightly expand who is 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.

Genetic Testing & Counseling

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.

Genetic Privacy & Protection

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 offset rising healthcare costs, shifting more of the expense to workers despite limited evidence that these programs are effective. The vendors that run these programs are not required to follow laws that protect privacy and individual rights.

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

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming the standard-of-care for many cancers and accounts for about a third of oncology drugs in development. 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 therapies must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Act, federal legislation which strives for equal insurance coverage of cancer treatments, regardless of how they are administered.

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