Policy Archive
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
4/7/2025 - Joined the Ad Hoc Group for Medical Research and over 500 organizations in recommending at least $51.303 billion for NIH for FY2026, in addition to support for the Advanced Research Projects Agency for Health, representing a 9.0% increase over the final FY2025 funding level.
03/26/2025 - Urged the Senate to protect Medicaid and other critical healthcare programs as it considers the budget reconciliation and potential program cuts.
03/17/2025 - Encouraged congressional leadership to prioritize patient-centered engagement as it crafts healthcare policies in the 119th Congress and ensure that patients don't face unintended consequences due to health policy changes.
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.
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