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

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.

5/7/2019
We signed onto coalition letters to the House and Senate regarding FY20 funding for the Defense Health Research programs.

Current Issues

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.

Fraud Alert! Genetic test scams are a growing problem.

Are you considering genetic testing? There is a flood of information about genetic tests in the media, and even at community events such as health fairs and senior centers. If these promotions have caught your attention and you are considering DNA/genetic testing, there is important information that you should know to protect yourself from misinformation and potential harm.

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

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.

Medicare Restricts Coverage of Genetic Testing

May 2019 - FORCE is fighting a new Medicare policy that significantly reduces access to genetic testing for BRCA, Lynch syndrome, and other hereditary cancer mutations. Medicare beneficiaries who don’t have "recurrent, relapsed, refractory, metastatic, or advanced stage III or IV cancer" no longer qualify for genetic testing coverage. In other words, people who have earlier stage cancers (stage I or II), those with no evidence of disease or who are “cured” are not eligible for genetic testing. Numerous organizations joined FORCE in submitting comments urging changes to the policy.

Support 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.

Short-Sighted Genetic Counseling and Testing Guidelines Challenged

March 2019 - U.S. Preventive Services Task Force (USPSTF) determines which preventive services are available at no cost under the ACA. The USPSTF posted new draft guidelines for "BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing" which fall short of representing the needs of the hereditary cancer community. FORCE and partner cancer organizations submitted an extensive response advocating for more current and inclusive guidelines.

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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