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

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.

4/8/2019
FORCE submitted a letter of support for TX legislation that would mandate coverage of fertility preservation prior to cancer-related surgery or treatment.

Current Issues

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 who have 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.

FDA Takes a Closer Look Breast Implant Safety and Expands Efforts to Protect Women's Health

May 2, 2019 - The FDA released a statement on the agency’s new efforts to protect women’s health and help to ensure the safety of breast implants. The statement follows a 2-day advisory committee meeting in late March on the safety of breast implants and the surgical mesh frequently used in reconstructive surgeries. A FORCE representative attended the meeting and made remarks during the public comments period on March 26. We are part of a Breast Device Collaborative Community advising the FDA...

FORCE Responds to Short-Sighted Genetic Counseling and Testing Guidelines

March 2019 - U.S. Preventive Services Task Force (USPSTF) determines which preventive services are available at no cost under the Affordable Care Act. The USPSTF posted new draft guidelines for "BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing" which fall short of adequately representing the needs of the hereditary cancer community. FORCE, joined by over a dozen other cancer organizations, submitted a comprehensive response advocating for more current and inclusive guidelines.

Excessive Wellness Program Penalties Eliminated

Rules issued by the Equal Employment Opportunity Commission (EEOC) in 2016 weakened protections against invasion of medical privacy and eroded workplace and health insurance discrimination safeguards afforded by the GINA and ADA. In December 2017, a court vacated the EEOC’s wellness program incentive rules. Effective January 1, 2019, workers and their spouses may no longer be financially pressured into providing health history information or undergoing medical exams as part of an employer-sponsored wellness program.

ALERT:
Buyers Beware. Cancer Genetic Testing Should Be Performed in the Health Care Setting.

There is a flood of information available about genetic tests for cancer risk in the media, and even at community events, such as health fairs and senior centers. Genetic testing can provide important, life-saving information when done in the right way. 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.

Mammograms for Women Under 50 Preserved Through 2019

Annual screening mammograms for women age 40+ are protected for another year. 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 free annual 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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