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Jan. 26, 2021


Nick Parent, Tennessee Rare Action Network Volunteer Community Engagement Liaison

Posted by Sean Roberts

Newborn Screening

My four-year-old and eleven-month-old daughters were both screened at birth. Both girls were found to have elevated levels of phenylalanine and diagnosed with phenylketonuria (PKU). Fortunately, their cases are mild and treatable with medication. Thanks to early screening and continued monitoring, we can keep the phenylalanine levels low and controlled without any developmental or other health issues.

Out-of-Pocket Costs

My previous employer’s health benefit plan lacked adequate coverage for the medication my daughter requires to treat her metabolic condition, phenylketonuria (PKU). By mid-2018 we had used up all funds on our co-pay card and we were at risk of having to find another way to cover the high cost of our daughter’s medication. NORD provided assistance to bridge the gap, which allowed us to keep my daughter’s prescription filled through the remainder of that year. Today, I’ve changed employment and my current company covers the medication appropriately.