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

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...

1/17/2018
FORCE submitted comments on a draft CMS Policy on NGS for Medicare Beneficiaries with Advanced Cancer.

1/3/2018
PALS Act moratorium extended to January 2019, preserving insurance coverage of mammograms for women ages 40-49. Read more...

12/20/2018
Court vacates EEOC wellness program rules effective January 1, 2019 signaling end to coercive practices.

Current Issues

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Treatments & Therapies

Federal "Right to Try" Legislation Misses the Mark

Legislation aimed at loosening federal oversight of state right-to-try laws is gaining momentum on Capitol Hill. Bills in the House and Senate would allow patients with cancer or other serious illness to request access to experimental therapies that are not yet approved by the Food and Drug Administration (FDA). We believe the proposed legislation raises significant ethical issues and could be detrimental to patients. The FDA should not be sidestepped or circumvented. It serves to protect Americans, including critically ill patients and their families, from the potential harms of untested drugs. 

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

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?

Insurance Coverage & Barriers

Executive Actions Pose New Challenges for U.S. Health Care

On October 12, President Trump issued an executive order which could undermine the individual and small group health insurance markets. The order would allow “junk” association and short-term health plans. The same day, the White House announced plans to halt cost-sharing reduction payments (CSRs) which help health insurance companies offset out-of-pocket medical costs for low-income enrollees, keeping coverage affordable. In essence, without changing or repealing the Affordable Care Act, these actions authorize federal agencies to modify regulations so that more health plans will be exempt from some of its core requirements. 

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. 

Insurance Coverage & Barriers

FORCE Supports Oral Chemotherapy Parity Initiatives

Oral chemotherapy is becoming the standard of care for many types of cancer. Oral treatment also 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 of patient administered and physician administered cancer treatments.

Treatments & Therapies

ICER Review of PARP Inhibitors for Ovarian Cancer

In July 2017, the Institute for Clinical and Economic Review (ICER) released a draft evidence report titled, “Poly ADP-ribose polymerase (PARP) Inhibitors for Ovarian Cancer: Effectiveness and Value.” FORCE expressed significant concerns about the report's conclusions via written comments and testified at the Midwest CEPAC meeting on September 14, 2017. ICER released its final report later that month. Despite our efforts and those of many others, the final report does not reflect the value of PARP inhibitors to the broader ovarian cancer community, or to the hereditary cancer community we serve. 

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