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

9/3/2019
We joined over 50 orgs representing millions of patients, advocates, caregivers, researchers, and physicians to express support for appointment of Norman Sharpless as FDA Commissioner.

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.

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). Typically reviewed and updated every 5 years, the Task Force recently published new guidelines that slightly expand the population eligible for BRCA counseling and testing by adding women “who have an ancestry associated with BRCA1/2 gene mutations.” While this change is positive, the recommendations 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.

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.

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. 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.

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. 

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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