Casper mom encourages legislators to pass Medical Nutrition Equity Act

Published: Aug. 9, 2022 at 5:55 PM CDT
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CASPER, Wyo. (Wyoming News Now) - A mom from Casper is meeting with Wyoming lawmakers to encourage them to pass the Medical Nutrition Equity Act. The act was referred to the Subcommittee on Health in 2021 and has not been reintroduced.

Two years ago, Kala McWain learned that her four-day-old son had a rare metabolic disorder called phenylketonuria (PKU).

The metabolic disorder means that McWain’s son, Braxton, cannot break down the amino acid phenylalanine (Phe), which is found in all foods that contain protein. Newborn screening for PKU is required in all 50 states, without treatment it can cause intellectual disabilities, but it will not shorten life expectancy.

Since the diagnosis, McWain has been sharing her family’s experience, advocating for support, and connecting with others in the PKU community through Instagram.

“I immediately started sharing it on my social media pages, basically with at that time close family and friends, but sharing with them what PKU was and just educating everybody and it slowly turned into advocacy for legislation,” said McWain.

In her advocacy for legislation, McWain is meeting with Wyoming lawmakers including Senator Cynthia Lummis, Senator John Barrasso, and Representative Liz Cheney. The act is designed to expand insurance coverage to include foods, vitamins, and amino acids that are medically necessary for disorders and conditions including PKU.

According to McWain, with insurance coverage, the family currently spends over $600 a month on specialty low-protein foods and formulas her son needs to treat his condition. She plans to continue advocating for federal change but also has hopes to make an impact in Wyoming in the future.

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