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Health Leadership from Sen. Kerry and Sen. Casey: A Cure for Devastating Discrimination in Insurance Coverage for PKU Patients is on the Move
Date:12/4/2009

WASHINGTON, Dec. 4 /PRNewswire-USNewswire/ -- The following is an op-ed by Jeffrey Lewis, President of the Heinz Family Philanthropies:

Credit Senators John Kerry (D-MA) and Robert Casey (D-PA) with a significant contribution to the health care debate: a bill ends a glaring disparity in the way Americans living with Phenylketonuria (PKU) control their potentially devastating disease, and the way others living with serious chronic conditions are treated. "The Medical Foods Equity Act of 2009" aims to save affected families thousands of dollars in out-of-pocket costs, cut long-term costs for the entire system, and offer 20,000 Americans a better shot at healthy, happy, and productive lives.

What is PKU? PKU inhibits the body's ability to process protein, leading to severe brain damage. PKU appears in between 1 in 13,500 and 1 in 19,000 live births in the U.S. If the condition is not identified and controlled, its victims suffer grave neurological damage, losing an estimated two-to-four points of IQ per year, and running the risk of seizures, microcephaly, mood disorders and profound retardation. If diagnosed, these conditions can be prevented by a diet of the specially formulated foods which prevent toxic accumulations, and PKU kids can go on to lead nearly normal lives. Many adults can and do function with PKU as long as they can have an uninterrupted supply of the formulas.

But there's a problem. Medications that control chronic conditions are generally covered by insurance. But because PKU is treated by diet, not by a pill, many families and individuals are forced to pay thousands of dollars a year out of their own pockets to avoid what otherwise would surely be a slow death in an institution. The distinction between diets and medication for treatments is arbitrary, widespread and wrong.

We've come part of the way towards equitable treatments. Almost 50 years ago, newborn screening progra
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SOURCE Heinz Family Philanthropies
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