Bilirakis Continues Work to Help Children with Rare Medical Conditions

The House Energy and Commerce Committee's Subcommittee on Health today held a hearing to review legislation to improve options for coordinating care for children with complex medical conditions.

Members discussed the updated H.R. 546, the Advancing Care for Exceptional Kids Act, with stakeholders and experts to build upon previous discussions.

Tampa's Tish West, parent of a child with medically complex conditions, testified before the Subcommittee. Her daughter Caroline has a rare genetic condition known as Alternating Hemiplegia of Childhood that has left her with severe physical and mental disabilities.

Congressman Bilirakis discussed the legislation and the impact it will have on local Florida communities with Tish and other witnesses:

Congressman Bilirakis recently met with Lakota Lockhart, an inspiring St. Joseph's Children's Hospital patient, to discuss this legislation as well. Lakota is 1 of approximately 3 million children in the U.S. who are medically complex, and requires intensive treatment from a wide array of specialists.

"Our community, and St. Joseph's Children's Hospital especially, has witnessed the plight of families affected by rare conditions," said Congressman Bilirakis. "I've worked to help these patients and their families for many years, and I'm proud this legislation offers improved treatment options for rare patients, like Caroline and Lakota. This bill builds on our work from the 21st Century Cures Act and my OPEN Act to help millions across the country."