WASHINGTON, DC - The Subcommittee on Health, chaired by Rep. Joseph Pitts (R-PA), today held a hearing examining updated text for H.R. 546, the Advancing Care for Exceptional Kids (ACE Kids) Act of 2015.
Led by bipartisan committee members Chairman Emeritus Rep. Joe Barton (R-TX) and Rep. Kathy Castor (D-FL), H.R. 546 seeks to improve access to care for children with complex medical conditions who receive services in the Medicaid program.
“We first discussed this bill as part of the 21st Century Cures initiative," stated full committee Chairman Fred Upton (R-MI). “Since then, we’ve received a lot of feedback from my colleagues, and stakeholders - many of which are in this very room. I’m glad to see such strong interest in working together to get this bill right and better serve the patients in need of our help."
Chairman Emeritus Barton delivers his opening statement.
“The pediatric providers at Texas Children’s Hospital in Houston, Children’s Medical Center in Dallas, and Cook Children’s and many others throughout the country deliver high quality and coordinated care that improves the lives of these children and leads to reduced costs to the Medicaid program," stated Chairman Emeritus Barton. “The families of these medically complex children need to spend their time and energy focusing on their child - not worrying about more bureaucratic red tape."
Mr. Jay G. Berry, M.D., M.P.H., with Harvard Medical School, stressed the fact that while the children with medical complexities represent a small population, they have a large impact on the pediatric health care system. “Very rarely is one provider or one clinic able to achieve this goal," he stated. “Rather, this goal is more often achieved by all providers working as a team."
Ms. Letitia “Tish" West spoke about her role as a parent of a medically complex child, stating, “Caroline West has a rare neurological condition known as Alternating Hemiplegia of Childhood. … Her condition affects every aspect of her life. She has seizures, cannot eat by mouth, is confined to a wheelchair, is developmentally delayed and has cerebral palsy. … It takes 29 different specialty care providers to maintain her health and welfare." Over the course of managing Caroline’s health, Ms. Walsh had to quit her job and was frequently taking her daughter to different doctors to find a diagnosis. “All this travel and testing was funded personally. Insurance would not cover the expenses at the various hospitals out of our area," added Ms. Walsh.
