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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 BECOME AN ADVOCATE 2022 Priorities Advocacy Archive Public Policy Initiatives

News Briefs

12/6/2022 - Joined a broad range of stakeholders to urge Appropriations leaders to pass the FY23 Omnibus spending bill, and to include boosted funding for the National Institutes of Health (NIH) and our nation’s other research agencies.

11/28/2022 - Asked congressional leadership to include the Access to Genetic Counselor Services Act (H.R.2144/S.1450) in a year-end legislative package so that Medicare beneficiaries can better access genetic counseling services.

11/21/2022 - Joined the Defense Health Research Consortium in encouraging congressional leaders to enact the FY23 Defense Appropriations Act, to ensure full funding of the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP).

11/2/2022 - Urged congressional leaders to prioritize the Metastatic Breast Cancer Access to Care Act (H.R.3183/S.1312), which eliminates waiting periods for SSDI benefits and for Medicare coverage for individuals with metastatic breast cancer.

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