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

4/17/18
FORCE and over 100 patient and professional health orgs reached out to Congressional leaders to oppose expansion of short-term health insurance plans. Read letter...

4/12/18
FDA finalizes guidances to accelerate development of reliable, beneficial next generation sequencing-based tests. Read press release...

4/9/2018
FORCE joined other organizations in urging Utah to clarify and protect coverage of breast reconstruction after cancer for its Medicaid recipients. Read more...

2/27/2018
FORCE, along with over 100 other organizations, is advocating for continued funding of DoD research programs. Read our letter to Congressional leaders.

2/7/2018
FORCE staff and advocates joined stakeholders for a "BRCA Community Perspectives on Data Sharing" workshop in Santa Cruz, CA.

2/6/2018
We joined nearly 40 patient and health care professional organizations in expressing opposition to proposed national right-to-try legislation. Read the letter...

 

Current Issues

Treatments & Therapies

Medicare Establishes National Policy for Coverage of Tumor Testing

The Centers for Medicare and Medicaid Services (CMS) recently finalized a National Coverage Determination (NCD) to provide Medicare beneficiaries with coverage of FDA-approved or -cleared tests that help identify cancer treatment options. These tests, also known as companion diagnostics, examine a person’s tumor or blood to see which targeted medications may be most effective for treating their cancer. The new policy applies specifically to patients with advanced cancer.

Treatments & Therapies

Federal "Right to Try" Legislation Aims to Increase Access

Federal right-to-try legislation aimed at loosening oversight of access to unapproved drugs for "compassionate use" is gaining momentum on Capitol Hill. Bills proposed in the House and Senate would allow 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. The House of Representatives approved a right-to-try bill on March 21, 2018. Now the Senate must align its version of the legislation with the House and vote on the bill. 

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. 

Screening & Prevention

Breast Mammograms for Women Under Age 50 Preserved

Annual mammograms for women age 40 and over are protected for another year. In 2016, the U.S. Preventive Services Task Force (USPSTF) released new breast cancer screening guidelines recommending that the minimum age for annual screening mammograms for “average risk” women be raised to 50. If implemented, women ages 40-49 would likely lose access to yearly screening mammograms. FORCE continues to be a leader in efforts to preserve 100% insurance coverage of this lifesaving cancer screening for all women who are not known to be high-risk starting at age 40.

Genetic Privacy & Protection

Wellness Program Penalties Overruled By Court

Rules issued by the U.S. Equal Employment Opportunity Commission (EEOC) in May 2016 weakened protections against invasion of medical privacy and erode workplace and health insurance discrimination safeguards afforded by GINA and ADA. In December 2017, a court vacated the EEOC’s wellness program incentive rules effective January 1, 2019. This means that workers and their spouses may no longer be financially pressured into providing medical information or undergoing medical exams; instead, this type of participation in a wellness program must be genuinely voluntary, beginning in 2019.

Insurance Coverage & Barriers

FORCE Supports Chemotherapy Parity Initiatives

Oral chemotherapy is becoming the standard of care for many types of cancer and accounts for about a third of the oncology development pipeline. Importantly, many oral anti-cancer medications do not have IV or injected alternatives, and are the only option for some patients. PARP inhibitors, which hold great promise for treating BRCA-related cancers, are just one example. For this reason, these medications must be as affordable as their IV counterparts. FORCE is supporting the Cancer Drug Coverage Parity Act of 2017, a national legislative initiative which strives to create equal insurance coverage cancer treatments, regardless of how they are administered.

Insurance Coverage & Barriers

Tax Reform: How Will It Affect the Health Care and the Hereditary Cancer Community?

On December 20, 2017, Congress finalized passage of sweeping tax reform legislation. The President signed the bill two days later. The plan has numerous components that will likely impact every taxpayer. We cannot address all of the implications but the bill contains a mixture of positives and negatives in regard to health care, the hereditary cancer community, and the nonprofit sector. 

How will the new law affect the deduction of medical expenses? The Affordable Care Act? Charitable donations?

Treatments & Therapies

Cancer Research Funding Preserved

Federal funding for cancer research has led to significant advances in cancer prevention, detection, diagnosis, treatment, and quality of life for patients. More than 14 million U.S. cancer survivors are alive today, largely because of the nation’s commitment to cancer research. The main sources of U.S. cancer research funding are the National Institutes of Health (NIH), which includes the National Cancer Institute (NCI), and the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). FORCE was involved in recent efforts to preserve or increase funding for these crucial programs. 

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