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What It Is

​This program administers payment for medically necessary therapeutic foods, formulas, supplements and low-protein modified food products, with the exception of over-the-counter products, for all verified Kentucky residents of the Commonwealth of who do not qualify for another insurance program or whose insurance coverage is exhausted or denied. The program works with durable medical equipment providers, pharmacies and university metabolic centers to assist those with inborn errors of metabolism and genetic conditions to receive life-saving treatments as funds allow.

What are Inborn Errors of Metabolism and Genetic Conditions and How are They Treated?

Not all inborn errors of metabolism and genetic disorders require a special diet. A special diet is very important for those who do.

The diet must be strictly followed for the entire lifetime of the person affected.

Some examples of inborn errors of metabolism and genetic conditions that require a special diet prescribed and monitored by a metabolic specialist include those that affect the body's use of proteins, fats or organic acids.

The most common of these is called phenylketonuria, commonly referred to as PKU.

Phenylketonuria is an inherited disorder of protein metabolism that is treated with a special diet. If PKU is not treated, it can cause brain damage and intellectual disability.

A sufficient diet that provides the correct balance of food intake is vital for proper growth and development. Regular blood monitoring will determine if changes need to be made to the diet.

The plan for each client is designed by a metabolic specialist and metabolic nutritionist/dietician to enhance physical and mental well-being for the person affected by an inborn error of metabolism or genetic disorder.

What Do People With PKU Need To Know?

Children do not outgrow PKU. It is a lifelong condition.

For an adult with PKU who is off diet or whose diet is not well controlled, high blood phenylalanine levels can cause serious problems such as poor short-term memory, eczema, depression, mood changes and seizures. Over time, this can lead to serious damage of the central nervous system. An adult who gets back on diet can see improvements in all of those things.

A woman with PKU risks having babies with birth defects and intellectual disability if her diet is not well-controlled before and during pregnancy.

A woman with PKU who is on diet before and during pregnancy has a much better chance of having a healthy, normal baby.

Insurance Coverage for those who require metabolic foods, formulas, supplements or low-protein modified food products

Many health insurers now cover medical foods, formulas, supplements and low-protein modified foods for treatment of these disorders.

However, these products must be billed and denied before a person can seek coverage through the Kentucky Metabolic Foods and Formula Program. An appeal for the denial must be filed with the insurance company before our program will enroll the person into the Kentucky Metabolic Foods and Formula Program.

If you have insurance and your metabolic claim has been denied coverage in the past, you have the right to file an appeal.

By filing an appeal, the insurance company has to review your claim and you might then be approved for coverage, although this is not always the case. You can file an appeal more than once on each claim.

You need to contact your insurance provider to file an appeal which must be submitted in writing to be reconsidered for coverage.

How to File and Appeal with Your Insurance Provider

Start by reading the denial letter from your insurance provider. You only have 30 days to file a appeal from the date of denial, so you must act quickly. The denial letter usually includes information about the company's appeals process. If not, call the number on the back of your insurance card to ask for information on filing an appeal. When you write your appeal letter, ask your metabolic clinic office or primary care physician to also provide a letter of support and the diagnosis codes, if needed.

Always keep copies of the appeal letter as well as certified mail receipts or other tracking methods for your records.

Metabolic Clinics In Kentucky


Required Patient Forms for Coverage by Kentucky Metabolic Foods and Formulas Program

Required Provider Forms