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.

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.

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

Statement Sets the Record Straight on AHCA and HR 1313

May 2017 - 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 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 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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