Insurance-coverage of phenylketonuria.





The fiscal impact is indeterminable.


Persons with inherited enzymatic disorders have genetic disorders that affect their ability to digest foods and metabolize nutrients.  The bill appears to require at a minimum the medical nutrition therapy to consist of enteral formulas and special food products that are part of a diet prescribed by a physician.  The bill does not appear to preclude insurance companies and self-funded public employers from charging copayments, coinsurance, deductible, other cost sharing for this benefit or for placing service and/or annual payment maximums.  The bill does not appear to preclude carriers from conducting utilization medical necessity reviews.


Enteral nutrition is currently a covered benefit of the State’s Employee medical plan for the treatment of phenylketonuria (PKU).  Enteral nutrition consists of tube feedings of a nutritional replacement product (a commercially-formulated substance that provides nourishment, and affects the nutritive and metabolic processes of the body) administered through a tube that is placed directly into the gastrointestinal tract which is required to provide sufficient nutrients to maintain weight and strength commensurate with the patients overall health status.


Payment for medical nutrition therapy would only reimburse for special food products used in place of normal food products such as those sold at grocery stores for the general population for the treatment of inherited enzymatic disorders.  Nutrition therapy would only be paid when prescribed by a licensed physician for the treatment of inherited enzymatic disorders.     


Nutritional therapy would not include coverage for vitamins, minerals, naturopathic remedies, herbal remedies, nutracuticals, and dietary supplements. These substances would not be covered regardless of form (IV, injectable, liquid, tables, etc.).


Nutrition education and training for individuals with inherited enzymatic disorders shall include training of parents of minor dependent children covered by the plan. 


The total net annual expenditures cannot be estimated due to the relative rarity of these disorders, the broad coverage language of the bill and the lack of treatment guidelines and costs.


Prepared by:   Ralph Hayes, Employees Group Ins.     Phone: 777-5440