A Cure For Discrimination In Insurance

Monday, March 1, 2010

A Cure For Discrimination In Insurance by Jeffrey Lewis (NAPSA)—Senators John Kerry (D-MA) and Robert Casey (D-PA) have made significant contribution to the health care debate: a bill that can improve the way Americans living with phenylketonuria (PKU) control their potentially devastating disease. PKUinhibits the body’s ability to process protein, leading to severe brain damage. If the condition is not identified and controlled, its victims suffer grave neurological damage, losing an estimated two to four points of IQ ter shot at healthy, happy and productivelives. There’s a problem, however: Medications are generally covered by insurance but PKU is treated by diet. That means families are forced to pay thousands to avoid Sometimes, creating seizures, microcephaly, mood disorders and profound retardation. If diagnosed, these conditions can be prevented by a diet of the specially formulated foods that 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 havethe formulas. Almost 50 years ago, newborn screening programs were developed and nowall infants in the United States are tested. Early detection and consistent treatment will prevent the neurologic damage done by PKU. Nationwide, spending about $340 million a year on PKU diagnosis and maintenance could save almost $2 billion a year while assisting 20,000 families hit hard by a traumatic disease. It’s good economics and a good reflection of the moral thinking that should be at the heart of our health care debate. The Medical Foods Equity Act aims to save affected families thousands of dollars, cut longterm costs for the entire system and offer 20,000 Americansa bet- born Screening Saves Lives Act does not mandate or fund treat- per year and runningtherisk of health care solutionsis just commonsense. @ what otherwise would likely be a slow death in an institution. The distinction between diets and medication for treatments is arbitrary, widespread and wrong. What’s more, the recent New- ment of PKU or similar disorders, leaving it up to the individual insuranceplans. Most states require health insurance plansor other state programs to cover PKU treatment but there are often gaps. For example, health care plans regulated by the federal Employee Retirement Income Security Act— self-insurance plans by large employers or unions—are exempt from covering PKU treatment. Anyone without insurance may be out of luck, as well. Senators Kerry and Casey’s foresight in introducingthis bill should be the beginning. Action at the state level could be just as important. Every governor and every candidate for the governor’s office should demand that every health insuranceplan include coverage for PKU. Now is the time to act—it’s the frugal thing to do and the right one. Jeffrey Lewis is the president of the Heinz Family Philanthropies and can be found at jlewis@ heinzoffice.org.