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

July 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.

7/1/2020
Called on Congress to delay implementation of a new policy that would allow health insurers to exclude cost-sharing assistance from counting towards patients' out-of-pocket maximums.

6/26/2020
Provided feedback on the “Preparing for the Next Pandemic” white paper asking that it address high out-of-pocket costs for oral anticancer drugs in future pandemic relief efforts.

Current Issues

Florida Enacts Sweeping Genetic Protection Law

July 1, 2020 - Florida just became first state 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 require or ask for genetic information or use genetic test results in any manner. Even if genetic information is shared, the insurers cannot deny coverage, limit, or cancel insurance coverage, or set different premiums based on genetic information or DNA.

ACTION ALERT: 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.

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.

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.

FORCE Weighs in on Breast Implant Safety and Informed Consent

December 23, 2019 - Today, FORCE submitted comments on FDA's proposed new labeling and patient communication guidelines for breast implants. These updates follow a device safety hearing and recall of certain textured breast implants earlier this year. If enacted, the guidance will add a boxed warning, patient decision checklist, revised rupture screening recommendations, and more.

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.

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.

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.

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.

Mammograms for Women Age 40-49 Preserved Until 2020

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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