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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 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.
News Briefs
4/3/2024 - Submitted comments to Senator Cassidy and the HELP Committee in response to an RFI regarding oversight of clinical diagnostic tests, known as in vitro diagnostics (IVDs) and laboratory-developed tests (LDTs).
3/15/2024 - Joined the Coalition to Increase Access to Cancer Care (CIACC) in comments to House leadership on efforts to strengthen the Employee Retirement Income Security Act (ERISA) and emphasize the need to pass the Cancer Drug Parity Act.
3/1/2024 - Provided feedback to CMS on the Medicare Advantage Advanced Notice and accompanying Part D Redesign Program provisions aimed at reducing and managing beneficiary out-of-pocket costs in the Medicare Part D program.
2/29/2024 - Wrote sponsors to endorse the BENEFIT Act, which would require the FDA to include in the benefit-risk assessment framework of a new drug application how patient experience data was considered in the review process.
Related Resources
- Informational GINA flyer
- Genetic Information Nondiscrimination Act website provides an introduction to the GINA law and its health insurance and employment protections. It includes answers to common questions about GINA.