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

11/26/2018
FORCE endorsed HR 6836, the Clinical Treatment Act, which would ensure that states cover routine care costs for Medicaid enrollees who participate in approved clinical trials.

9/26/2018
FORCE joined nearly 100 patient advocacy orgs in expressing concern about allowing Medicare Advantage plans to use step therapy. Read letter...

9/13/2018
We joined in a letter encouraging the House Ways and Means Committee to make the 7.5% medical expense deduction permanent.

9/7/2018
We sent a letter to Senator Collins (R-ME) seeking her leadership on national oral parity legislation

9/5/2018
FORCE signed on to a coalition letter urging the Senate to maintain the allowed medical expense deduction at 7.5% of one's adjusted gross income.

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

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 be able to afford otherwise. As some in the hereditary cancer community have learned, however, health insurers are not required to cover screenings beyond those mandated in the ACA, which are focused on the “average risk” population. Our community members often struggle to get coverage for earlier, more intensive cancer 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. 

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. 

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

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.  

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