Medical Nutrition Equity Act (S. 2013/H.R. 3783)

PKU is diagnosed through Newborn Screening, and although all babies in the United States have been screened at birth for over 50 years, coverage for medically necessary treatment is often denied and unreliable. Without early and lifelong treatment, PKU causes irreversible intellectual and physical disabilities. Congress has an opportunity to prevent these devastating results by passing the Medical Nutrition Equity Act (MNEA), a bi-partisan bill waiting for action in the U.S. Senate and House of Representatives.

The National PKU Alliance has been working since 2009 to help pass federal legislation to address coverage of formula and low protein modified foods. The bill has been introduced again in the current Congressional session.

As an advocate for patients with rare diseases, you are an essential part of the legislative process. Legislators take more notice when they hear from their constituents. Please complete the form on the right to take action and contact your Members of Congress.

The Medical Nutrition Equity Act (S. 2013/H.R. 3783) was introduced in both the Senate, by Senator Robert Casey (D-PA), Senator Joni Ernst (R-IA), Senator Chuck Grassley (R-IA, and Senator Jacky Rosen (D-NV), and in the House of Representatives, by Congressman James McGovern (D-MA) and Congresswoman Jaime Herrera Beutler (R-WA). 

After you take action, your job is not done! The final step is to share the action alert with your family, friends, co-workers, and anyone who might be interested in taking action on behalf of the rare disease community and share it on your social media channels. 

If you have any questions, feel free to contact info@npkua.org.