Packard Children’s patient visits Capitol Hill to advocate for kids with complex medical conditions

Patient Tyler Briend visits Congress to advocate for the ACE Kids Act of 2015

On the heels of his preschool graduation, 4-year-old Tyler Briend kicked off his summer vacation by traveling to Washington D.C. to speak with lawmakers about improving health care access for kids like him – patients living with complex medical conditions. Tyler, a patient at Lucile Packard Children’s Hospital Stanford, and his parents made the trip as part of Speak Now for Kids Family Advocacy Day, sponsored by the Children’s Hospital Association (CHA).

Tyler was born with a congenital heart defect called hypolastic left heart syndrome with intact atrial septum and has a host of related, complex health issues, including left hemiplegic cerebral palsy with dystonia. Today, Tyler lives with just half a heart and relies on specialized care from numerous providers to manage his condition. He has suffered multiple strokes, and at just 4 years old, he has undergone three open-heart surgeries, nine catheterizations and approximately 20 other surgical procedures.

On June 21, Tyler and his family joined more than 40 patients representing 35 children’s hospitals across the country to meet with Congress and bring attention to the unique health care challenges faced by children with complex medical conditions. They urged Congress to pass the bicameral, bipartisan Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act of 2015 – S. 298/H.R. 546), which would allow states the flexibility to create pediatric-focused networks within the Medicaid program and coordinate the delivery of a full range of services in the most appropriate care settings, even across state lines.

Tyler with Congresswoman Anna Eshoo of California’s 18th Congressional District

“We feel so fortunate to have access to Tyler’s specialists at Packard Children’s and believe all children with complex medical disorders should have the right to quality care to help them thrive,” said Tyler’s mom, Jennie Briend. “It was an honor to be able to share Tyler’s story with our congresswoman, Anna Eshoo, and to discuss the impact the ACE Kids Act could have not only for us, but for so many other families across the U.S.”

“The ACE Kids Act of 2015 still isn’t passed?!” Tyler asks U.S. Senator Michael Bennett of Colorado at a reception

“One in 25 kids in the U.S. is medically complex, two-thirds of these patients rely on Medicaid for health coverage and in many cases care is not always accessible,” said Sherri Sager, chief government and community relations officer at Lucile Packard Children’s Hospital Stanford. “We’re working to change that by supporting the ACE Kids Act, and having the opportunity to join the Briend family to speak with Congress about Tyler’s condition was a major step toward achieving that goal.”

The two-day event concluded with a patriotic celebration, allowing patients and families to spend time together following their days on the hill.

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