diet for life title

Genetic inborn errors of metabolism (IEM) are rare, inherited disorders present at birth that affect how food is broken down in the body. IEM affect about 1 in 1,500 Michigan births. Depending on the specific diagnosis, IEM can cause defects in protein, carboyhydrate, or fatty acid metabolism. These substances found in foods (which are otherwise essential for people unaffected by the disorder) accumulate and rise to toxic levels for individuals with IEM. If untreated, these individuals develop severe medical problems such as failure to thrive, cognitive impairments, behavior problems, mental health issues, seizures, coma and even death. Treatment recommendations have evolved considerably over time but now the current guideline for all individuals with IEM, regardless of age, gender or IEM diagnosis is 'Diet for Life'.  

Diet for Life treatment for individuals with IEM requires access to multiple types of medical foods, formulas, medications and supplements along with careful diet monitoring and modifications by specialists to determine appropriate nutritional treatment for the individual's physical and mental health from infancy through adulthood.

Diet for Life Work Group, 2013-2014
Diet for Life Work Group Report: Proposed Strategies, 2013-2014

Metabolic Formula and Food Work Group Summary, 2015

Insurance Coverage for Metabolic Formula: Michigan Resources for Families

Medicaid Update: Medicaid Policy Changes have been put in effect as of April 1, 2015. These changes address some of the barriers identified by the Diet for Life Work Group. To view the updated Medicaid Policy, visit the Medicaid Provider Manual, under the Medical Supplier section, review the changes under 2.13.A. Enteral Nutrition (Administered Orally).   

Children's Special Health Care Services (CSHCS)

Local CSHCS contacts

The Family Center for Children and Youth with Special Health Care Needs 
Family Phone Line: 1-800-359-3722 or cshcsfc@michigan.gov
The Family Center is the statewide parent-directed center within CSHCS and the Michigan Department of Health and Human Services. The primary role of the Family Center is to offer emotional support, information and connections to community-based resources to families of children and youth with special health care needs. Children do not have to be enrolled in CSHCS to receive services from the Family Center.

Inborn Errors of Metabolism Formula Brief

Michigan Family to Family Health Information Center: Accessing Insurance for Medical Food and Formula

Michigan Consumer Guide to Health Insurance

Talking With Your Employer about Insurance Coverage for Metabolic Foods and Formula

Family Center Training: Transition to Adult Services

Metabolic Formula: A Diet for Life - A video describing the lifelong treatment of specialized medical formulas for individuals with inborn errors of metabolism and the difficulty in attaining them because they are expensive and not all health plans cover the cost.

National Resources for Families

The Medical Nutrition Equity Act of 2017 has been introduced to Congress. For updates on progress check H.R.2587 and S.1194

National PKU Alliance

Insurance Challenges and Ways to Succeed: National PKU Alliance presentation by Sean Corry and Beth Rader

Children's Hospital Boston, PKU Toolkit

Cambrooke Therapeutics Patient Support

Nutricia Metabolics Coverage Department

Compassion Works Medical, LLC (973) 832-4736 or support@compassionworksmrs.com - Compassion Works Medical supports coverage and reimbursement assistance for all types of special medical conditions and treatments.

Newborn screening 50 years later: access issues faced by adults with PKU
Rethinking the formula

Newborn Screening word cloudNutrition Guidelines
PKU Nutritional Management Guidelines
MSUD Nutritional Management Guidelines
Recommendations for the nutrition management of phenylalanine hydroxylase deficiency
Phenylalanine hydroxylase deficiency: diagnosis and management guideline

For more information, contact 517-335-4181 or newbornscreening@michigan.gov