WASHINGTON, D.C. — Nearly 50 child patients and their families will join children's hospitals from across the country in Washington, D.C., for Speak Now for Kids Family Advocacy Day, June 26 – 27, 2018, to speak to the importance of prioritizing children’s health. The event enables patient families to meet with members of Congress on issues that directly affect their children's care. Specifically, the children and their families will ask Congress to safeguard Medicaid and improve it for children with complex medical conditions by passing the bipartisan Advancing Care for Exceptional Kids (ACE Kids) Act; and to support training programs for children's doctors by reauthorizing the bipartisan Children's Hospitals Graduate Medical Education (CHGME) program.
"Health care coverage and being able to see a doctor is vital to all children," said Mark Wietecha, president and CEO of the Children’s Hospital Association (CHA). "Making children's health a national priority requires understanding the essential role Medicaid plays for the millions of kids who, through no fault of their own, rely on the program to receive health care services designed to meet their unique needs.”
Roughly 6 percent of children enrolled in Medicaid have complex medical conditions requiring specialized care from a variety of doctors, often in multiple states. While they make up a small part of the overall pediatric population, these children represent a large share of Medicaid spending on children — approximately 40 percent.
Alex Beckwith and his sister Maddy are medically complex patients at Cook Children's Health Care System in Fort Worth, Texas. The siblings have mitochondrial disease and a host of other serious ongoing medical challenges. Under the ACE Kids Act, kids like Alex and Maddy will benefit from an enhanced medical-home model of care designed to meet their unique needs, easing the burden of tracking and coordinating care that often falls on the families. Improved care through Medicaid will help Alex and Maddy stay focused on the things they love like acting, violin, learning and inspiring each other.
"Congress has an immediate opportunity to help kids like Alex and Maddy by working to improve the effectiveness of Medicaid for children," said Rick W. Merrill, president and CEO of Cook Children's Health Care System and chair of the Board of Trustees of Children's Hospital Association. "It's so important that we make children a priority and advance bipartisan solutions to improve care, reduce spending and help children lead healthy and productive lives. I’m honored to join the brother-sister dynamo of Alex and Maddy in bringing this urgent request to our lawmakers."
The bipartisan ACE Kids Act of 2017 was introduced by lead co-sponsors Sens. Charles Grassley, R-Iowa, and Michael Bennet, D-Colo., in the Senate and Reps. Joe Barton, R-Texas, and Kathy Castor, D-Fla., in the House. The legislation would improve care for children with the most medically complex and expensive conditions in Medicaid while reducing spending through coordination of care across multiple providers and services, and easing access to out-of-state care. The Senate bill, S. 428, currently has more than 30 co-sponsors while the House version of the bill (H.R. 3325) has garnered more than 60 co-sponsors to date.
All children need access to well-trained pediatricians and pediatric specialists. The CHGME program trains half of all pediatricians and pediatric specialists in the United States — more than 7,000 annually.
The bipartisan Children's Hospitals GME Support Reauthorization Act of 2018 (S. 2597/H.R. 5385) will extend the CHGME program for five years, and sets full program funding at $330 million annually. Led by Reps. Gene Green, D-Texas, and Michael Burgess, R-Texas, in the House and Sens. Bob Casey, D-Pa., and Johnny Isakson, R-Ga., in the Senate, the bills are supported by more than 80 members of Congress.