Search

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 www.npkua.org, 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!

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates