Policy Archive

Statement Sets the Record Straight on AHCA and HR 1313

Insurance Coverage & Barriers

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 by members of our community.

This statement aims to answer questions and clarify information regarding the Preserving Employee Wellness Programs Act (HR 1313), employer-based wellness programs, and the Genetic Information Nondiscrimination Act (GINA). It also explains where things stand with repeal and replacement of the Affordable Care Act (ACA), and clarifies what may be considered a pre-existing condition. We encourage you to share this with friends and family in the hereditary cancer community. Please check back regularly for updates as policies on these and other issues are considered.

Statement on Health Care and Genetic Privacy

Take Action Now 2021 Priorities Advocacy Archive Public Policy Initiatives

News Briefs

3/31/2021 - Expressed support for legislation (S.5355/A.2151) that would establish genetic counseling as a licensed profession in the state of New York.

3/16/2021 - Signed on in support of the Medicare Multi-Cancer Early Detection Screening Coverage Act of 2021 (H.R. 1946), which will give CMS authority to cover blood-based multi-cancer early detection tests and future test methods (like urine or hair tests), once approved by the FDA.

2/17/2021 - In a letter to President Biden, underscored the urgency of prioritizing access to the COVID-19 vaccine for patients with active cancer and survivors of cancer.

2/4/2021 - Joined a group of 75 orgs in a letter to HHS expressing concern that new Medicare Payment Modernization models proposed by the prior administration could jeopardize access to medically necessary prescription drugs and harm patients with serious illnesses.

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