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Petition to pass the Medical Nutrition Equity Act!

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The Medical Nutrition Equity Act (MNEA) will help thousands of people across the United States. I myself have Phenylketonuria (PKU) which is an inherited metabolic disorder detected through Newborn Screening program nationwide. PKU means my body cannot process the essential amino acid, phenylalanine, and also cannot produce another essential amino acid called tyrosine. Because of this I, along with all other PKU patients, must carefully eat, medically necessary low protein foods, most of which are not found in the marketplace, and consume a medically prescribed formula every day. This medical food and formula is VERY expensive and is unaffordable for most Americans. The medical formula alone costs between $12,000-$15,000 per year. Far too many patients have to fight for insurance coverage, facing repeated denials for their medically necessary treatment. Staying on the PKU diet is crucial. An untreated child with PKU can lose 4 IQ points per month and will suffer severe and irreversible intellectual disabilities before reaching toddlerhood. Children and adults who are not on treatment experience other medical issues including depression, impulse control disorder, phobias, epilepsy, tremors, and pareses. A pregnant PKU woman who is not on diet just before and during her pregnancy is very likely to produce offspring who may not survive, and if they do, will most likely suffer intellectual disability, microcephaly, congenital heart disease, and intrauterine growth retardation. Treatment for PKU can be financially burdening to families and therefore many patients consequently go untreated. You may be wondering “Why should I sign this? Who am I really helping?” By signing this petition you will be supporting the Medical Nutrition Equity Act (MNEA) - H.R. 2587 and S. 1194!  This legislation will not only help PKU patients like myself, but also other Americans with serious metabolic and digestive disorders such as Crohn’s Disease, Ulcerative Colitis, Eosinophilic Esophagitis, and Cystic Fibrosis. The MNEA would require ALL insurance companies in the United States to cover their required medically necessary treatment. Unfortunately, not many people know about the MNEA, so with the help of the New England Connection for PKU and Allied Disorders (NECPAD) and the National PKU Alliance (NPKUA) I have created this petition to raise awareness. The metabolic and allied disorders community wants to see change. We want to see a difference in how people understand these conditions, and we want every single person to have a fighting chance in life and not be financially burdened to do so. We believe it is time for Congress to pass the Medical Nutrition Equity Act to protect Americans with metabolic and allied disorders being denied access to medically necessary treatment. We need to give them a fighting chance in life. After all, we are people NOT just a diagnosis.

On behalf on NECPAD and people across the United States with metabolic or allied disorders, we hope you will support us by signing this petition and passing it along to your families, friends, neighbors, and co-workers. Be the change you want to see the world! You have a chance to make a difference for so many people.

Sincerest regards,

Alyssa Johnson 

PKU Young Adult

NECPAD Board Member