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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Newsflash

7/15/2018
We joined the Friends of the Cancer Policy Institute coalition in submitting comments on the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs.

6/20/2018
FORCE, along with over two dozen orgs, issued a statement on the final rule permitting expansion of association health plans. Read Statement...

6/1/2018
FORCE staff are attending the American Society of Clinical Oncology (ASCO) annual meeting in Chicago.

5/9/18
We joined 80 patient advocacy, medical, and industry orgs in urging Congress to enact legislation to modernize FDA oversight of clinical laboratory diagnostics. Read letter...

5/8/2018
FORCE, along with over 100 other organizations, is advocating for continued funding of DoD research programs. Read our letters to Senate and House leaders.

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.

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. 

Genetic Testing & Counseling

Comments on Draft Research Plan for BRCA Testing Submitted

In April 2017, FORCE submitted comments on the USPSTF Draft Research Plan for BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. The final Research Plan will be used to guide a review of scientific evidence to develop updated recommendations on BRCA genetic counseling and testing. These guidelines are utilized to inform coverage decisions on specific preventive services. The Affordable Care Act stipulates that any preventive service receiving a USPSTF rating of “A” or “B” must be covered by most health plans with no copay or cost-sharing. As such, these guidelines impact access to care and insurance coverage of services for the cancer community.

Genetic Privacy & Protection

New Legislation Threatens Genetic Privacy

H.R. 1313, the Preserving Employee Wellness Programs Act, garnered a great deal of attention in recent weeks. On March 22, 2017, we received word that the bill is "on hold" and will not move forward without revisions—including changes to the genetic information requirements. Unfortunately, members of the House Committee on Education and the Workforce indicated that they will push forward with modified legislation. We are working to ensure that any revisions to the proposed legislation reflect the concerns of those affected by hereditary cancer. Updates on this important issue will be provided when they are available. 

Genetic Testing & Counseling

Clarification Includes Survivors in BRCA Screening Guidelines

The USPSTF BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing Guidelines are used to determine who is eligible for BRCA genetic counseling and testing with no out-of-pocket costs under the Affordable Care Act. These recommendations were initially interpreted to apply only to women with a family cancer history consistent with the USPSTF criteria, who have not been diagnosed with cancer. In 2015, a clarification was issued indicating that these guidelines also apply to women who have been diagnosed with breast, ovarian, or other cancers. 

Genetic Testing & Counseling

Population-Wide BRCA Testing

In 2014, new research and public commentary raised the subject of expanding BRCA genetic testing to all women of Ashkenazi Jewish ancestry, or offering testing to every woman in the U.S. starting at age 30 as part of routine medical care. The concept of population-wide screening—and genetic testing itself—is complex, and brings with it a wide range of medical, ethical and financial issues. Careful consideration of the potential benefits, risks and limitations is essential. FORCE issued a brief statement on the issue and continues to monitor research, public policy and other factors that may impact expanded genetic testing.  

Insurance Coverage & Barriers

Medicare Expands Genetic Services Coverage in Some Regions

Four Medicare Area Contractors (MACs) approved Local Coverage Determinations (LCDs) that better align their services with NCCN guidelines in a number of areas such as expanding coverage of genetic testing for individuals who have or had cancer consistent with hereditary cancer syndromes, including men and those affected by prostate and pancreatic cancer; coverage of multigene genetic tests panels if more than one mutation may be indicated; and clarification of the BRCA testing policy for use of the targeted cancer therapy, Lynparza. 

Genetic Testing & Counseling

Supreme Court Rules Gene Patents Unlawful

On June 13, 2013, in a highly-publicized case, the U.S. Supreme Court unanimously ruled that the patents on the BRCA1 and BRCA2 genes were invalid. This landmark decision was the culmination of an ongoing legal battle between Myriad Genetics and the ACLU. FORCE strongly supported the stance that gene patents negatively affected research and access to care. We filed an amicus brief in support of the ACLU in addition to providing testimony to the U.S. Patent and Trademark Office about the burden that gene patents placed on members of the hereditary cancer community.

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