The Healthcare Access and Financing, Medical Home and Education and Dissemination work groups of the NEGC compiled resources and links designed to assist families and providers with developing letters of medical necessity.
- Sample letter regarding formula/modified low protein food products for PKU (Dr. Wendy Smith, ME Med / Pediatric Specialty Clinic) (attached)
- Sample letter regarding neuropsychological evaluations for individuals with metabolic conditions, shared by Susan Waisbren, PhD, Senior Psychologist at Boston Children's Hospital
- Sample paragraphs to insert into a letter of medical necessity or to a school for 37 genetic conditions: Genetics Education Materials for School Success (GEMSS) "Provider Versions"
For example: My patient______________________ has been diagnosed with Aicardi syndrome. Aicardi syndrome is a genetic condition that typically includes developmental brain abnormalities, seizures, and differences in the retina. Intellectual disability, low muscle tone or hypotonia, visual impairment, and gastrointestinal issues such as constipation, diarrhea, and gastroesophageal reflux are common medical issues. Some individuals with Aicardi have problems regulating their body temperature and many have skin changes that can include cancerous growths.
(Dr. Leah Burke, VT Regional Genetics Center)
- Writing Letters of Medical Necessity
Medical Home Portal, University of Utah
- Letters of Medical Necessity
Nutricia Metabolics (Medical formula manufacturers can be a good source of sample letters, which can be customized.)
- State Statutes & Regulations on Dietary Treatment of Disorders Identified Through Newborn Screening, National Coordinating Center / Catalyst Center (Nov 2016)
- Pathways to Reimbursement Success
Cambrooke Therapeutics (includes several LMN for medical food, seizure disorder, PKU and other metabolic conditions)
- Nutricia Metabolics - Medical Formula Manufacturer
Medical formula manufacturers can be a good source of sample letters, which can be customized