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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

11/8/17
FORCE, along with 60 other patient groups, is asking the Senate to preserve medical expense deductions in any forthcoming tax reform legislation.  

10/25/17
We joined over 100 Defense Health Research Consortium orgs in supporting DoD research funding. Learn more...

9/22/17
Check out this new video w/FORCE & 15 other cancer orgs representing patients, physicians, nurses, & social workers. Oppose Graham-Cassidy! See Video...

9/14/17
FORCE reps were in St. Louis today for an ICER hearing on the value and cost of PARP inhibitors for ovarian cancer patients.

Genetic Privacy & Protection

In the United States, there are laws and regulations aimed at protecting people from discrimination based upon a diagnosis of cancer or an increased risk of disease. Some of these laws are federal, covering the entire U.S. and its territories. In certain instances, individual states pass legislation providing protections beyond those offered at the federal level. FORCE monitors and weighs in on these important protections on behalf of the hereditary cancer community.

Insurance Coverage & Barriers

Statement Sets the Record Straight on AHCA and HR 1313

Recent events related to proposed changes in health care and genetic privacy laws have spurred concern and uncertainty in the hereditary cancer community. Some media stories have disseminated inaccurate information, which has intensified people’s unease. We prepared this briefing to dispel some of the misinformation and allay some of the fears that have been expressed. This statement aims to answer questions and clarify information regarding HR 1313, employer-based wellness programs, and GINA.  It also explains where things stand with repeal and replacement of the ACA, and clarifies what may be considered a pre-existing condition. 

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 22nd, 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 Privacy & Protection

Regulatory Changes Weaken GINA and ADA Protections

Rules issued by the U.S. Equal Employment Opportunity Commission (EEOC) in May 2016 weaken protections against invasion of medical privacy and significantly erode workplace and health insurance discrimination safeguards afforded by the Genetic Information Nondiscrimination Act (GINA) and Americans with Disabilities Act (ADA). FORCE and many other patient advocacy groups fought the changes but the new rules were finalized and apply to employer-sponsored wellness programs beginning on or after January 1, 2017.

Genetic Privacy & Protection

Genetic Information Nondiscrimination Act (GINA)

In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect individuals from genetic discrimination in health care and employment. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF).  FORCE was an active member of this coalition beginning in 1999, the year FORCE was established.  

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