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Congressman Gus Bilirakis

Representing the 12th District of Florida

Bilirakis, Castor Discuss ACE Kids Act with Local Patients and Families

August 18, 2016
Press Release

Congressman Gus Bilirakis (FL-12) and Congresswoman Kathy Castor (FL-14) today visited with patients and families of St. Joseph’s Children’s Chronic-Complex to update the progress of the ACE Kids Act in Congress and build momentum on getting it passed this year.

The ACE Kids Act is modeled after the “medical home” concept that originated with St. Joseph’s Children’s Chronic-Complex Clinic.

“We are making progress and we are here to report today that we intend to pass this bill this year. We have more than 200 bipartisan cosponsors in the U.S. House of Representatives,” Congresswoman Castor said today.

“This is happening because families and children’s hospitals across America have come to realize this is the best way to deliver care, thanks to the revolutionary work at St. Joseph’s Children’s Hospital.”

Castor filed the bipartisan ACE Kids Act (Advancing Care for Exceptional Kids) last year with Congressman Joe Barton (TX-6) and Congressman Bilirakis as one of its first cosponsors.

“The ACE Kids Act is a no brainer as far as I’m concerned. The advantages are better outcomes, doctors work as a team, quicker diagnosis, it’s cost-efficient.” Congressman Bilirakis said today. “Kathy and I are friends, we’re partners, we’re working in a bipartisan manner not only for the Tampa Bay area, but for the state and country.”

By coordinating and improving access to care, the ACE Kids Act would help streamline services and reduce the hardships our nation’s sickest children and their families must go through. It has a companion bill in the U.S. Senate and it is supported by a wide range of stakeholders, including the Children’s Hospital Association, the American Academy of Pediatrics, the American Heart Association, the National Military Family Association and the National Down Syndrome Society. 

“Before coming to the complex-clinic, we used to bounce around many, many doctors. It takes 29 different services to support Caroline’s health care. You can imagine trying to coordinate all those things, make appointments with different doctors or trying to get doctors to speak with each other – it was really a nightmare. At one point, we actually checked in the hospital for four days so that we could get the doctors to consult together on Caroline’s diagnosis. That was a lot of money and a lot of trauma for all of us,” said Tish West, mother of Caroline West, a patient of St. Joseph’s Children’s Chronic-Complex Clinic. Last month, Ms. West testified during a congressional hearing, a substantive step towards passage of the legislation.

Ms. West said her daughter’s medical issues are now sometimes addressed within minutes.

“We are part of a family – this is a true medical home. One time, we were at the clinic with Dr. Plasencia and we had an issue that was unresolved. Dr. Plasencia walked down the hall to see the GI doctor, spoke with her, came back, consulted with us and within 10 minutes we had a plan for treatment.”

U.S. Reps. Castor and Bilirakis will return to Congress next month and work on passing the ACE Kids Act.

About the ACE Kids Act

Many of the nation’s sickest children must cross state lines to receive care from pediatric specialists whom they can access through Medicaid. But the state-by-state variability of Medicaid creates a care system that is fragmented and unnecessarily burdensome for these medically complex children and their families. One in 25 children is medically complex, according to the Children’s Hospital Association, and approximately 2 of these 3 million children are covered by Medicaid and represent nearly 40 percent of Medicaid costs for kids. These children may have cancer or a number of conditions — like congenital heart disease, cystic fibrosis and Down syndrome. These children require access to a myriad of pediatric specialists and parents or guardians must maneuver through a billing maze that many times becomes a full-time job. Transferring to a medical home, such as St. Joseph’s Children’s Chronic-Complex Clinic, has been life-changing for these sick children and their families. The ACE Kids Act would bring this medical home model nationwide to ensure children with complex medical needs get the care they need quickly. The ACE Kids Act is voluntary for states, providers and families.