To: The United States House of Representatives
Chairman Upton: Include the Voice of PKU in 21st Century Cures
Please close the gap between PKU and the readily available treatment known as the category of medical food, a designated orphan therapy. Patients deserve access to the latest innovations in the nutritional management of PKU, which stem from NIH research but continue to be denied and are often not reimbursed.
Why is this important?
In the United States, over 70% of PKU adults are not being treated in a metabolic clinic. Among the untreated adults, there is an increase in mental illness, psychological disorders, neurological deterioration (epilepsy, tremor, paresis), and children born to pregnant women with untreated PKU have severe birth defects and mental retardation. This is 100% preventable and the barriers to access care are unjustifiable. Medical food saved my life and my children's lives and coverage is denied by my employer, the federal government because of my age. This discriminatory policy is not prohibited by the Affordable Care Act and poses a serious threat to the health and safety of the PKU victim. It is essential to include PKU in this initiative in keeping with good and acceptable treatment practices - "diet for life." Please help.