Advocacy

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

Advocacy > Advocacy Issues


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.

Genetic Counseling & Testing

Genetic counseling and testing are the foundation and crucial first steps in learning that one carries an inherited predisposition to certain cancers. Accordingly, FORCE is active in efforts surrounding cancer risk assessment including legislative, regulatory and research initiatives related to genetic counseling and testing for BRCA and other mutations associated with hereditary breast and ovarian cancer syndromes. FORCE aims to ensure that high-risk individuals have access to genetics experts and the highest quality genetic tests.

Genetic Testing & Counseling

New BRCA Genetic Screening Recommendations Miss the Mark

September 2019 - Recommendations published by the U.S. Preventive Services Task Force (USPSTF) guide the use of many health screenings and determine which preventive services are available at no cost-sharing under the Affordable Care Act (ACA). The Task Force recently published new guidelines that slightly expand the population eligible for BRCA counseling and testing, adding women “who have an ancestry associated with BRCA1/2 gene mutations.” While this change is positive, the guidelines are significantly lacking and fall short of meeting the needs of 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 Testing & Counseling

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. 

Genetic Testing & Counseling

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. Numerous organizations joined FORCE in submitting comments urging changes to the policy.

Genetic Testing & Counseling

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.

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 Leads the Charge for Medicaid Coverage of Genetic Testing

Genetic testing for increased risk of breast, ovarian, and other cancers has become standard-of-care for prevention and risk management. Medicaid coverage of health services, however, is managed independently by each state. Only 4 Medicaid programs do not cover genetic counseling and/or testing for inherited BRCA genetic mutations. FORCE wrote comments and secured the support of over 30 partner organizations to encourage NC Medicaid to offer this service to its enrollees.

Genetic Testing & Counseling

FDA Approves New Direct-to-Consumer Genetic Test for 3 BRCA Mutations

On March 6, 2018, the Food and Drug Administration (FDA) announced approval of a new direct-to-consumer genetic test for three BRCA mutations most commonly found in people with Ashkenazi Jewish (Eastern European) ancestry, often referred to as founder mutations. With thousands of known BRCA1 and BRCA2 mutations, 23andMe’s “Personal Genome Service Genetic Health Risk (GHR) Report for BRCA1/BRCA2 (Selected Variants)” provides consumers with an extremely limited snapshot of potential hereditary cancer risk. 

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