Advocacy

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

Advocacy > Current Issues

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Newsflash

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

3/21/2019
FORCE, with over 300 organizations and institutions, is supporting the Ad Hoc Group’s FY2020 recommendation of at least $41.6 billion in funding for the NIH.

3/19/2019
We signed onto a letter to Rep. Debbie Wasserman Schultz thanking her for her leadership on the PALS Act, preserving mammograms for women ages 40-49.

3/18/2019
FORCE, joined by interested orgs, submitted extensive 
comments
on the USPSTF draft guidelines on BRCA counseling and testing. 

2/19/2019
FORCE and a group of 20 stakeholders met with Medicare to urge continued coverage of genetic testing for all cancer survivors who meet guidelines. 

2/15/2019
The government funding bill President Trump signed into law today contained language directing the FDA to ensure breast density information is included in mammography reports.

Current Issues

Genetic Testing & Counseling

FORCE Responds to Short-Sighted Genetic Counseling and Testing Guidelines

March 2019 - U.S. Preventive Services Task Force (USPSTF) recommendations determine 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 patient advocacy organizations, submitted a comprehensive response advocating for more current and inclusive guidelines.

Genetic Testing & Counseling

Medicare Revisits New Genetic Testing Policy

March 2019 - FORCE is fighting a new Medicare policy that will significantly reduce access to genetic testing for BRCA, Lynch syndrome, and other mutations. Hereditary cancer genetic testing for beneficiaries who don’t have "recurrent, relapsed, refractory, metastatic, or advanced stage III or IV cancer" will no longer be covered. In other words, people who have earlier stage cancers or no evidence of disease do not qualify for genetic testing coverage under the new National Coverage Determination. Medicare has agreed to reopen and revisit the policy in response to our concerns.

Genetic Privacy & Protection

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.

Genetic Testing & Counseling

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.

Screening & Prevention

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.

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

ACA unconstitutional? What does this mean for preventive care and pre-existing conditions?

On Friday, December 14, a Texas district court judge ruled that the Affordable Care Act (ACA) is unconstitutional due to a recent change in federal tax law. As part of the 2017 tax reform package, the ACA was amended to eliminate the penalty for not having health insurance. A lawsuit argued, “Once the heart of the ACA—the individual mandate—is declared unconstitutional, the remainder of the ACA must also fall.” The judge agreed.

Insurance Coverage & Barriers

New Federal Regulations and Proposals May Adversely Affect
High-Risk Cancer Community

October 31, 2018 – With midterm elections looming, the White House and federal agencies recently announced new regulations and proposals—ranging from drug pricing to state ACA waivers and insurance plans to health reimbursement accounts—that will impact health care in the U.S. Some may have negative consequences for our community but expansion of health reimbursement arrangements (HRAs) could provide a silver lining. 

Insurance Coverage & Barriers

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 Act, federal legislation which strives to create equal insurance coverage of cancer treatments, regardless of how they are administered.

Treatments & Therapies

Federal "Right to Try" Legislation Passes, Signed by President

May 30, 2018 - Federal right-to-try legislation aimed at loosening oversight of access to unapproved drugs for "compassionate use" was signed by President Trump today. The law allows patients with cancer or other serious illnesses to circumvent the Food and Drug Administration (FDA) when requesting access to experimental therapies not yet approved for public use. Congress passed the final right-to-try bill on May 22 after months of negotiation and changes to the legislation.

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