John Kerry: “Each year an estimated 2,550 children in the United States are diagnosed with metabolism disorders. For the rest of…”

“Each year an estimated 2,550 children in the United States are diagnosed with metabolism disorders. For the rest of their lives they will need modified foods that do not have the nutrients their body is incapable of processing. They may also require supplementation with pharmacological doses of vitamins and amino acids. The good news is that with treatment they can lead normal, productive lives. But without these foods and supplements, patients can become severely brain-damaged and hospitalized. Through bipartisan efforts, we have made great strides in improving how quickly babies with these disorders are diagnosed. Newborn screening has made a tremendous difference in the early diagnosis of metabolic disorders. However, affordable and accessible treatment options remain out of reach for too many Americans. Medical foods and supplements which are necessary for treatment may not be covered by insurance policies and can be prohibitively expensive for too many families. For those with a metabolic disorder, medical foods are critical in treatment, just as other conditions are treated with pills or injections. The sporadic insurance coverage of treatment is a problem. In response, over 35 States have enacted laws to enforce coverage of medical foods. However, too many loopholes remain and federal legislation is necessary to ensure that these individuals receive what they need to stay well.”