Two 6-year-old girls plan to travel from their homes in Chicago to the nation's capital this week in an effort to protect Medicaid funding for serious, long-term conditions.
In Illinois, 1.5 million children are insured by Medicaid, and doctors said at a news conference Monday that the program funds treatments keeping Layla Molina alive and Jamela Anthony in remission.
Layla, who lives in the city’s Little Village neighborhood, was born with a congenital heart condition and receives almost daily treatment in Advocate Children's Hospital’s 'complex care program.'
Without Medicaid, it would cost $2500 a day.
She and her mother are headed to Washington, D.C., Wednesday to campaign against cuts to Medicaid as part of the “Speak Now for Kids Family Advocacy Day.”
They’ll be traveling with Jamela and her mother, who said she wants to talk to lawmakers in hopes of helping other families experiencing what hers has.
Jamela is now in remission after a rare brain tumor wrapped itself around her spinal cord, leading to cancer of the nervous system.
She just completed a year of aggressive therapy at Lurie Children’s Hospital.
"The first thing that goes through your mind is, 'Wow, is my daughter going to live through this?'" Tangela Watson said at the news conference. "You just want to worry about fighting through this."
"Hopefully they get to see what these kids are going through, and you know they can put a face to it," she added.
The goal of their trip is two-fold, as they hope to lobby legislators against any large-scale Medicaid cuts, as well as advocate specifically for the Advancing Care for Exceptional Kids Act.
Also known as the ACE Kids Act, the legislation would expand access to coordinated care for children with complex medical issues.
It has bipartisan cosponsors in Congress, and both families traveling to Washington hope their advocacy will continue to fuel solutions despite a deeply divided political environment.