The Medical Nutrition Equity Act is a bipartisan bill that has been proposed to the United States House of Representatives. With its passing, the MNEA would create legislation that will require health insurance companies to assist in covering the cost of medically necessary formulas and specialty foods.

Currently, in most states, costs for these items are paid for out of pocket by the patient themselves. With patients relying on these specific formulas and specialty foods for their lifetime, costs can bear a heavy burden on individuals and families, totaling up to over $25,000 per year for an individual.

For more information on MNEA, see the attached fact sheet below. If you would like to join us in our effort to have this bill passed by the house of representatives, please visit the link below to have an automated letter sent to your house representative. We thank you for your support!

MNEA Fact Sheet

https://www.npkua.org/Portals/0/PDFs/advocacy/mnea-factsheet-iem-2021.pdf

Please contact your Members of Congress to co-sponsor the Medical Nutrition Equity Act today!

https://npkua.salsalabs.org/mnea_hr3783_s2013/index.html

The National PKU Alliance (NPKUA) is a vital voice for the PKU community. NPKUA spearheads work toward expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. They provide education and support to people living with PKU. They are the national voice for advocacy at the federal level - at the NIH, FDA and in the halls of Congress.

NPKUA is leading the charge in funding research for developments in a cure for PKU, as well as generating awareness for the Medical Nutrition Equity Act. To learn more about NPKUA, please visit the link below:

https://www.npkua.org/

There are a handful of resourceful websites to use when learning about PKU and connecting with the PKU community. Most commonly known are PKU News and How Much Phe.

PKU News is the one stop shop for all PKU news and community involvement. PKU News provides resources and support for individuals, families, and clinicians managing PKU and other inborn errors of metabolism. Their mission is to leverage innovation, insight, and research to improve the health, well-being, and daily lives of those with PKU and other inborn errors of metabolism.

How Much Phe is the ultimate resource for PKU families. This massive database holds nutritional information on more than 7,000 foods. Making it simple to search a food item and calculate the amount of Phenylalanine in each gram. Without this resource, PKU individuals and families would have a far more difficult time tracking Phe intake.

Recently, PKU News and How Much Phe have been rolled up into one platform called Flok. Flok will serve as one of the greatest resources for the PKU community, focused on expanding the capabilities of How Much Phe as well as bolstering the PKU communities connectedness through their app and community events.

The link to Flok can be found below

https://flok.org/

Cook for Love is a non-for-profit dedicated to the metabolic community. Their mission is to empower members of the PKU community to improve their health through cooking and education. Their goal is to dispel the myth that, given severe dietary restrictions, people on low protein diets must settle for less.

Cook for Love is a fantastic resource for anyone interested in learning more about the PKU diet, as well as find great recipes for all occasions. From what to keep in your pantry, to experienced PKU chefs, live cooking videos and countless recipes. Cook for Love is a great resource and is in the heart of every member of the PKU community.

https://cookforlove.org/