Legislators and policymakers need to hear from people living with PKU to understand the issues that are most important to our community. Your voice is the most effective tool in advocating at the local, state, and federal levels and there are many ways to get involved. Join us as we continue to advocate for important issues.

Advocate with Us

The NPKUA Advocacy Committee focuses on a variety of topics, including access to medical food and formula, newborn screening initiatives, community-level needs, and adult care. The Committee leads our efforts on Capitol Hill and collaborates with the broader PKU and rare disease communities for regional and state efforts.

Medical Nutrition Equity Act

PKU is diagnosed through newborn screening, and although almost all babies in the U.S. have been screened at birth for over 50 years, coverage for medically necessary treatment is often denied and unreliable. We have been working to help pass federal legislation to address coverage of formula and low-protein modified foods since 2009.

The Medical Nutrition Equity Act (MNEA) would ensure public and private insurance cover medically necessary foods as a treatment option, which are required to support proper growth and development and to prevent medical complications and severe disabilities for individuals with PKU. Requiring insurance coverage of low-protein medical foods will mean families won’t have to choose between paying for low-protein medical foods or other necessities.

Learn more about the MNEA at Patients & Providers for Medical Nutrition Equity. As the organization works to re-introduce the bill in the Senate, you can help by sharing your story.

Local media

Share your PKU rare disease story with your local media. Local news stations, radio programs, and newspapers are more likely to feature stories about people in the community. And your state and federal policy makers are tapped into local news. Be sure to share your story with NPKUA so we can feature it on our social media.

To learn more about our advocacy efforts or to become involved with the NPKUA Advocacy Committee, contact us at advocacy@npkua.org.