In a victory for child health, this week the U.S. Senate passed the Advancing Care for Exceptional (ACE) Kids Act, legislation that will improve and coordinate care for children with complex medical conditions, including rare lung diseases. The bill, sponsored by Sens. Chuck Grassley (R-IA) and Michael Bennet (D-CO), passed the Senate as part of a larger Medicaid package following House passage the last week of March. The President is expected to sign the bill into law.

The ACE Kids Act will create patient-centered health homes for children with complex medical conditions, including access to specialty care and acute providers and coordination of Medicaid provider services across state lines, utilizing national quality standards. Eligible children include those with rare pediatric diseases, life-limiting illness and/or at least one chronic condition that affects at least three organ systems and severely reduces physical or cognitive functioning. The ATS joined the Children’s Hospital Association and the American Academy of Pediatrics in a recent letter to Congress supporting the bill.