Georgia PKU Connect celebrates life-saving grant funding for Georgians with rare inherited metabolic disorders (IMD) diagnosed through newborn screening
Atlanta, GA – December 3, 2016.
During the 2016 legislative session, Georgia’s General Assembly voted to fund a medical foods assistance program that will provide critical, specially formulated medical foods for children and adults with Phenylketonuria, or PKU. PKU is a rare disorder affecting approximately 1 in 15,000 babies born each year and requires life-long medical nutrition therapy. A person with PKU lacks the liver enzyme needed to process phenylalanine, a common component of food. This causes phenylalanine to build to toxic levels in the body, particularly the brain, resulting in permanent damage. All babies are tested for PKU at birth through state newborn screening programs. “Ensuring PKU and other IMD patients have access to the treatment required to prevent intellectual disability and death is a priority of our organization.” says Kristen Vanags, President of Georgia PKU Connect. “No child or adult with PKU should suffer neurological damage from a condition we have known how to treat successfully in this country for over 50 years.”
The cornerstone of treatment is medical foods, specially compounded formulas and modified low protein foods made specifically to treat PKU and other IMDs. Unfortunately, the treatment for metabolic newborn screening conditions like PKU is cost prohibitive for most Americans and often not covered by insurance. According to the National PKU Alliance, the average container of PKU formula costs $40. A teenage boy with PKU can consume a full can every day, costing him $15,000/year in medical formula alone.
The Georgia General Assembly allocated approximately $1.2 million annually to Georgia Public Health who has enlisted the Emory Metabolic Nutrition Program to implement the Medical Nutrition Therapy for Prevention Program. Under the leadership of Dr. Rani H. Singh PhD, RD, LD this program will assist metabolic patients of all ages who are in need to ensure medical foods are accessible without interruption in care while insurance and financial issues are being navigated.
Georgia PKU Connect extends a heartfelt thank you to the following individuals who were instrumental in making this program possible:
- Rani H. Singh (Director, Emory Metabolic Nutrition Program)
- Richard Smith (Representative, Georgia House of Representatives)
- Butch Parrish (Representative, Georgia House of Representatives)
- Penny Houston (Representative, Georgia House of Representatives)
- David Bayne (Director of Government Relations, Georgia Department of Public Health)
- Emily Paynter (Newborn Screening Coordinator, Georgia Department of Public Health)
- Kristen Vanags (President, Georgia PKU Connect)
- Stephen Hunt (Board Officer, Georgia PKU Connect)
We are especially grateful to the inherited metabolic disorder families, affected children, and adult patients who shared personal stories in the hope of improving access to medical foods.
For questions regarding the Medical Nutrition Therapy for Prevention program or to request medical foods assistance, please contact: Mary Lauren Salvatore, MPH, CHES, 404-778-8527 or Tammy Scott, 404-778-8497.
Georgia PKU Connect is a 501c3 non-profit providing PKU families and individuals with support and resources needed to manage PKU and live healthy, productive lives.