As a Registered Dietitian, some years ago I worked in the pediatric metabolic clinic at a major university medical center. Many of my patients were treated not just by medication but also through special diets that helped to bypass specific defects in metabolic or genetic pathways crucial to keep them alive. Now as a public health student and soon to be practitioner, I am concerned by the fact that our nation’s uninsured population includes 3.8 million children with special needs. In general, approximately 10.2 million children in the U.S. have special health care needs. Of these 60% of Americans have previously been covered under employer-sponsored plans exempt from state laws requiring coverage for specific testing and therapies necessary to particular genetic diseases.
One of these therapies is medical food, an important therapy in diseases such as phenylketonuria (PKU) and epilepsy as well as many more rare diseases such as fructose intolerance. The problem lies in the fact that few insurance companies understand these inborn errors of metabolism and few health plans are likely to cover these treatments unless states mandate coverage. According to the Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children, although 38 states now require medical food coverage, they establish varying caps, limit the coverage to certain disorders, set age limits or have narrow definitions as to what qualifies as medical food.
This leaves young families without access to a Registered Dietitian to assist them in navigating medical nutrition therapy for their child. One mother’s story told by the Family Voices division of the Genetic Alliance, spoke of the struggle to not only diagnose her daughter with fructose intolerance but then, her struggle to manage her medical food needs. The first time she went grocery shopping after the diagnosis, she spent three hours in the grocery store and went home with only six items her daughter could eat. This does not even address whether these items could meet her daughter’s full nutritional needs for growth and general health. She wanted desperately to seek the help of a Registered Dietitian, however, the family’s insurance did not provide coverage.
The ironic part to this story is that medical nutrition therapy is actually generally much cheaper than medication or complications that could occur by not following a diet conducive to the child’s health and wellness. These children have to eat to live so diverting normal food costs to appropriate foods to meet their specific needs can be a very cost effective treatment while minimizing complications and therefore, emergency department visits and hospitalizations not to mention possibly reducing day-to-day medications needed.
Medical food and medical nutrition therapy can play a role in a variety of disease states or just generally keeping people healthy and well. With the push of the Affordable Care Act encouraging people to take responsibility for their own health, my hope is that states and providers will understand the importance of medical nutrition therapy or nutrition coaching by a Registered Dietitian in helping people choose foods and lifestyles that will promote wellness. This will in turn, decrease overall health care expenditures in our country. And after all, isn’t that the goal?