Sandy BulcherThere are approximately 20,000 Americans with Inborn Errors of Metabolism, and most require medical formula and low protein foods to treat their disorder. Currently, 38 states have laws governing medical formula and low protein food coverage. However, the laws vary significantly from state to state and many families are not able to fully benefit from the legislation due to restrictions, such as age. In addition, insurance plans governed by the Employment Retirement Income Security act, ERISA, are not required to follow state mandates, leaving many families unable to benefit from legislation passed in their state. This includes those covered by companies that have a large number of employees and are often self insured.

I’ve worked hard to get passage of legislation in Ohio that would require insurance companies to pay for metabolic formula, with no success thus far. I’ve also watched as parents from other states worked countless hours to get passage of legislation, only to be disappointed by the limitations added to the legislation that restricted coverage for many. To meet the needs of most, the answer seems to lie in federal legislation rather than state, which would require insurance plans to cover medically necessary formula and low protein food.

Finally the time has come, and federal legislation was introduced this past fall. Senator John Kerry of Massachusetts introduced the Medical Foods Equity Act, also known as S.2766, following recommendations of the Advisory Committee on Heritable Disorders in Newborns and Children. This legislation is also endorsed by the American Academy of Pediatrics, The Society of Inherited Metabolic Disorders, and the Genetic Metabolic Dieticians International. Many parent groups, professionals, and organizations support the legislation, including the MSUD Family Support Group.

Specifically, the legislation requires federal health plans, such as Medicaid, Medicare, CHIP, and Tricare, as well as, private health insurance to cover the cost of medical food (formula) and foods modified to be low in protein. The federal legislation would not be subject to ERISA guidelines, thus all insurance companies would be required to comply. According to the bill, the Secretary of Health and Human Services has the authority to determine age–specific minimum yearly coverage for all health insurance plans. The minimum yearly coverage applies to individuals across their entire life span. The secretary also has the authority to update minimum yearly coverage levels, according to the cost of living index and actual cost of treatment.

Senator Kerry is the sponsor of the legislation, but he needs our help to find co sponsors. A co-sponsor is a legislator who steps forward and demonstrates that he or she supports a bill by signing on as a co sponsor. The more co sponsors a bill has the more likely it is to pass. This is where we need your help. Please contact your state senators and ask them to sign on as co-sponsors of the Medical Foods Equity Act, also known as S. 2766.

Senators can be reached by phone or email. Your phone call or email will be addressed by one of the senator’s aides, whose job it is to inform their senator of issues important to his or her constituents. To learn more about the legislation, go to the National PKU Alliance website at, click on the “Legislation” tab, and "Talking Points".

Don’t forget to ask your family and friends to contact their state senators too! Thanks for your help!


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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