Texas Children’s Hospital was back on Capitol Hill in June in support of the Children’s Hospital Association Speak Now For Kids Family Advocacy Day, which brings patient families from around the United States to Washington, D.C. to share their experiences with lawmakers and staff, as well as to advocate for policies that will ensure the highest levels of medical care for children and their families.
We had a strong team from Texas Children’s participate this year. Anthony DeLuca, Chairman of the Board of Director’s Policy Committee, joined the Texas Children’s Government Relations and Public Relations teams in accompanying Tenley Kennedy, a heart transplant patient, and her family on visits to Capitol Hill.
Tenley is a perfect example of the type of child who needs fierce advocates and the specialized care very few hospitals can provide. Tenley was diagnosed with a severe heart condition prenatally, so her mother, Kelly, had to travel from her home state of Louisiana to Texas Children’s in order to access the care her baby would need. Tenley was a patient of Texas Children’s before she was ever born and touched nearly every aspect of our hospital’s top ranked Heart Center. Kelly shared that without Texas Children’s her daughter would not be alive today and that without Medicaid coverage they don’t know what they would do.
“Thank you Texas Children’s for choosing us to be your family advocates for Family Advocacy Day,” Kelly said. “We are truly blessed and feel so honored to represent such a wonderful hospital.”
Kelly, Tenley and the Texas Children’s team were able to meet with Senator Bill Cassidy (R-LA), who sits on the Senate Health, Education, Labor & Pensions Committee; and Congressman Gene Green, who serves as the Ranking Member on the House Energy and Commerce Committee’s Health Subcommittee, as well as staff from other House and Senate offices.
“In many ways, this visit was a culmination of our efforts this spring to expand Texas Children’s visibility on Capitol Hill,” said Rosie Valadez McStay, assistant vice president of Texas Children’s Government Relations. “In the past two months, members of Congress and their staffs have heard testimony from physician leadership, received insight into important programs from hospital administrators, seen the commitment and hands-on involvement of the Board of Directors, and now been exposed to some of the realities facing patient families. As a testament to this ‘all in’ engagement, Rep. Pete Olson (R-TX) cosponsored the ACE Kids Act within 24 hours of our most recent meeting.”
The ACE Kids Act is a congressional proposal to improve how care is delivered to America’s children who have complex medical conditions and are on Medicaid. Once enacted into law, the act will improve coordination of care, address problems with fragmented care across state lines, gather national data on complex conditions to help researchers improve treatments for rare diseases, and potentially save billions of dollars over the duration of 10 years.
“We will continue to look for opportunities to broaden our relationships and put Texas Children’s leadership and experience at the forefront of future policy discussions, McStay said. “We believe our involvement can make a difference.”