"Managing the care of these children is at best a challenge," said Pat Magoon, president and CEO of Chicago's Lurie Children's Hospital.
Roughly 2 million kids with such severe illnesses are enrolled in Medicaid and they constitute 40% of Medicaid costs for children, according to the Children's Hospital Association.
The chief sponsors of the legislation are Reps. Joe Barton (R-Texas) and Kathy Castor (D-Fla.). Other co-sponsors include Anna Eshoo (D-Calif.), who is seeking to become chair of the House Energy and Commerce Committee, and Jaime Herrera Beutler (R-Wash.).
Herrera Buetler cited her own experience giving birth to a baby girl last year with no functioning kidneys and the challenges her family faced in getting adequate treatment as part of her motivation in sponsoring the legislation. "We're fortunate. We have insurance," Herrera Beutler said. "Even with health insurance it was a battle."
Dr. Jennifer Arnold, a pediatrician who has dwarfism, also was on hand to lend support for the legislation. Her family, which includes two adopted kids with dwarfism, is the focus of a reality television show, The Little Couple, on The Learning Channel.
Supporters of the bill claim that it will ultimately save money by cutting out inefficiencies in the care-delivery system. But the legislation has not yet been vetted by the Congressional Budget Office to determine its financial ramifications.
Because of the toxic politics of healthcare, most legislative proposals fail to advance at the Capitol. But Barton insisted that the bill's prospects are strong and implored advocates to let members of Congress know that it's important. "This is a good start, but we want a good ending," Barton said.
Follow Paul Demko on Twitter: @MHpdemko
