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PKU Legislation
Important legislation regarding PKU funding and resources is currently under consideration.
How you can help
- The most important thing you can do to support these bills is to make sure that you are registered to vote! This lets your legislators know that you are keeping track of what they do, and that you will consider this when deciding who will earn your vote.
- If you see your Representative or Senator on the list of cosponsors, please be sure to thank them and ask for their continued support as the bill moves through the legislative process.
- If your legislators are not on the list, ask them why. Tell them how these bills can help your family. Give them the support they need to support your needs.
Medical Foods Equity Act
PKU Members! The Kakkis Everylife Foundationhas just made it even easier to contact your legislative representatives to support the Medical Foods Equity Act!
Please visit Kakkis Everylife Foundation and click on the NPKUA headline under "Our Issues."
You can either write your own letter or use a pre-filled one that you can personalize to your legislators. CongressWeb will then email your letter to your legislators or give you an option to print out your letter and mail it yourself.
Contacting your legislators has never been easier!Please take 5 minutes today and send your letters. Your representatives need to hear from you if we want this legislation to move forward that would require all health insurance companies and federal programs to cover the cost of formula and food for all ages!
House Bill Number: H.317
Bill Title: An Act designating May 24 as Phenylketonuria Awareness Day
Committee Assignment: Joint Committee on State Administration and Regulatory Oversight
Bill Summary: This legislation will designate May 24th as phenylketonuria (PKU) Awareness Day. PKU is a lifelong, inherited, recessive genetic disorder which all newborns are tested for at birth. People with PKU are unable to process the amino acid phenylalanine, and the only treatment is a lifelong, restricted, costly diet that is limited in phenylalanine.
Cosponsors: Geraldine Creedon, Thomas P. Kennedy, Barbara A. L'Italien, Brian A. Joyce, Linda Dorcena Forry, Joyce A. Spiliotis, Geoffrey D. Hall, Brian P. Wallace, Martin J. Walsh, Thomas J. Calter, Louis L. Kafka, Allen J. McCarthy, Jennifer M. Callahn, Walter F. Timilty
House Bill Number: H.925
Bill Title: An Act increasing coverage of foods modified to be low in protein.
Committee Assignment: Joint Committee on Financial Services
Bill Summary: Individuals with lifelong, inherited diseases of amino acids and organic acids must be treated through a strictly controlled, costly diet. Currently, insurance is only required to cover $2500 in food modified to be low in protein per year, an amount which hasn’t seen an increase in over 10 years. This bill will increase the dollar limit of coverage on foods that are modified to be low in protein from $2500/year to $5000/year.
Cosponsors: Geraldine Creedon, Thomas P. Kennedy, Barbara A. L'Italien, Linda Dorcena Forry, A. Stephen Tobin, Geoffrey D. Hall, Brian P. Wallace, Martin J. Walsh, Thomas J. Calter, Louis L. Kafka, Allen J. McCarthy, Jennifer M. Callahn, Walter F. Timilty
House Bill Number: H.926
Bill Title: An Act eliminating the need for reauthorization for coverage of nonprescription enteral formula.
Committee Assignment: Joint Committee on Financial Service
Bill Summary: Currently, inherited diseases of amino acids and organic acids are a lifelong diseases for which there is no cure, only treatment through a managed diet. Despite this, many insurance organizations require a doctor’s reauthorization of the condition every six months to one year in order to continue providing formula and food coverage. This legislation would eliminate the need for continued reauthorization after the initial authorization upon diagnosis.
Cosponsors: Geraldine Creedon, Thomas P. Kennedy, Barbara A. L'Italien, Linda Dorcena Forry, Geoffrey D. Hall, Brian P. Wallace, Martin J. Walsh, Thomas J. Calter, Louis L. Kafka, Allen J. McCarthy, Jennifer M. Callahn, Walter F. Timilty
House Bill Number: H.2057
Bill Title: An Act relative to the PKU newborn screening fee.
Committee Assignment: Joint Committee on Public Health
Bill Summary: All newborns in the Commonwealth are tested for PKU. This legislation would dedicate 10% of the fee for testing to the program to combat mental retardation in children suffering from a genetic defect causing phenylketonuria established in MGL Ch.111, s.4E, and direct that this money be distributed to the Commonwealth’s metabolic disorder clinic programs to be used for patient education and support, and anything else deemed appropriate by said clinics.
Cosponsors: Geraldine Creedon, Thomas P. Kennedy, Barbara A. L'Italien, Linda Dorcena Forry, Lida E. Harkins, Geoffrey D. Hall, Brian P. Wallace, Martin J. Walsh, Thomas J. Calter, Louis L. Kafka, Allen J. McCarthy, Jennifer M. Callahn, Walter F. Timilty, Anne M. Gobi
House Bill Number: H.2058
Bill Title: An Act relative to urea cycle disorders.
Committee Assignment: Joint Committee on Public Health
Bill Summary: This legislation would add urea cycle disorders to the types of disorders for which insurance coverage of nonprescription enteral formula and food products modified to be low protein is mandated.
Cosponsors: Geraldine Creedon, Thomas P. Kennedy, Barbara A. L'Italien, Linda Dorcena Forry, Geoffrey D. Hall, Brian P. Wallace, Martin J. Walsh, Thomas J. Calter, Louis L. Kafka, Allen J. McCarthy, Jennifer M. Callahn, Walter F. Timilty