Advocacy

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

Advocacy > Advocacy Issues


Newsflash

12/17/2019 - A FORCE staff member made comments at the FDA ODAC hearing in favor of olaparib as maintenance therapy for BRCA+ metastatic pancreatic cancer patients.

12/9/2019 - FORCE and 100+ orgs advocated that legislators complete FY20 Defense Appropriations Act negotiations and quickly pass/enact the bill to ensure continued funding of the DoD CDMRP.

12/4/2019 - We wrote South Carolina Senate medical affairs committee members asking that they support genetic counselor licensure in the state.

12/4/2019 - We joined the MedEx Coalition in asking elected officials to co-sponsor the Medical Expense Savings Act, legislation making the 7.5% threshold for medical expense deductions permanent.

11/4/2019 - FORCE, along with hundreds of medical and patient advocacy orgs, expressed support for a long-term reauthorization of PCORI.

Genetic Privacy & Protection

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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

Lawsuit Targets Wellness Program Penalties and Invasion of Privacy

July 16, 2019 - A lawsuit filed against Yale claims that its wellness program imposes excessive penalties for nonparticipation or noncompliance, and infringes on employees' genetic/ health privacy. Employers are increasingly implementing wellness programs to counter rising healthcare costs, shifting more of the expense to workers despite limited evidence that these programs are effective. The vendors that administer these programs are not bound by laws that protect privacy and individual rights.

Insurance Coverage & Barriers

Lawsuit Challenges ACA Preexisting Conditions Protections

September 18, 2018 - Earlier this month a Texas Federal District Court heard arguments in the case Texas v. United States. The Justice Department is weighing in on a lawsuit which could eliminate the Affordable Care Act’s (ACA) protections for people with preexisting conditions. The suit focuses on the Supreme Court’s 2012 decision that upheld the ACA’s requirement that Americans carry health insurance or pay a tax penalty. Noting that the tax overhaul passed in December 2017 eliminated the tax penalty, the litigation argues that the entire ACA law is unconstitutional. 

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 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

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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