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

July 31, 2020
Urged Medicare to allow use of non-invasive colorectal cancer screening test options in light of COVID; and, if a follow-up colonoscopy is needed, that it is covered with no cost-sharing for the patient.

7/20/2020
Joined 100+ patient and health care orgs to oppose a proposed Medicaid Rule that erodes prescription copay coupon assistance programs, a lifeline for people who depend on this aid for their medicines, and their health and well-being.

7/1/2020
Called on Congress to delay implementation of a new policy that would allow health insurers to exclude cost-sharing assistance from counting towards patients' out-of-pocket maximums.  

6/26/2020
Provided feedback on the “Preparing for the Next Pandemic” white paper asking that it address high out-of-pocket costs for oral anticancer drugs in future pandemic relief efforts.

Genetic Privacy & Protection

Take Action Now!

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

Florida Enacts Sweeping Genetic Protection Law

July 1, 2020 - Florida just became first state to enact a law that protects genetic information from life, long-term care and disability insurers, which are exempt from the national protections provided by the GINA. The new law says that insurers cannot require or ask for genetic information or use genetic test results in any manner. Even if genetic information is shared, the insurers cannot deny coverage, limit, or cancel insurance coverage, or set different premiums based on genetic information or DNA.

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 offset rising healthcare costs, shifting more of the expense to workers despite limited evidence that these programs are effective. The vendors that run these programs are not required to follow 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 Texas v. United States case. The Justice Department is weighing in on a lawsuit which could eliminate the Affordable Care Act’s 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 case argues that the entire ACA law is unconstitutional. 

Insurance Coverage & Barriers

Statement Sets the Record Straight on AHCA and HR 1313

May 2017 - Proposed changes in health care and genetic privacy laws have spurred concern and uncertainty in the hereditary cancer community. Some media stories have spread inaccurate information, which has intensified people’s unease. We prepared this briefing to dispel misinformation and decrease some of the fears that have been expressed. This statement answers questions and clarifies information about 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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