Jennifer Ruland, of Binghamton, New York, found out about the ERISA loophole the hard way. When she became pregnant last year, she elected to take the most expensive and comprehensive HMO her company offered. "I never thought for one minute that something like PKU would not be covered," she says. But when McKenna, now five months old, was diagnosed, Jennifer discovered that her company is self-insured, and that the hundreds of dollars a month she spends on the special formula her daughter needs to thrive are not reimbursable because the foods are "over-the-counter." Adds Jennifer, "I think the health care industry just needs to realize that PKU is serious and the diet is not optional," if PKU children are going to grow up to live normal lives.

Steve Droogan, of Pennsylvania, lost his insurance through his parents' plan once he graduated from college. A COBRA cost him $400 a month and did not cover his $1600 per month cost of PKU coolers, which provide 80% of his nutrition. Steve managed to barely get by on free samples, help from non-profits, and out-of-pocket support from his parents. Steve finally landed a job with insurance that covers his PKU coolers, but will likely face battles for coverage of his pre-existing condition, should his company change insurers, self insure, or he try to take another job.

Senators Kerry and Casey's foresight in introducing this bill may not be rewarded with a place on a jammed Senate agenda. But this should be the beginning of the process, not the end. Action at the state level could be just as important. As the legislative season approaches, every governor, and every candidate for the governor's office should demand that every health insurance plan offered in their states include coverage for PKU. By taking that one step, a governor can ensure that thousands of PKU families are treated fairly and equally -- all that PKU families ask. Sometimes, creating health care solutions is just common sense. Now is the time to act - it's the frugal thing to do. And the right one.

SOURCE Heinz Family Philanthropies