Earlier this summer, I had the opportunity to meet with several children with serious medical issues and their families. They traveled to Washington, D.C., to meet with members of Congress to discuss the continuing and difficult challenges children with complex medical conditions face in getting care. As I return from August recess and children across the country head back to school, I can’t help but think about two of those kids, Alex and his sister Maddy, and the opportunity my colleagues and I have to pass legislation that would help our nation’s sickest children.
Alex and Maddy are patients at Cook Children’s Health Care System in Fort Worth, Texas. The siblings have mitochondrial disease and a host of other ongoing medical challenges. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy. But both children are so much more than their diagnoses. Maddy is a curious 4-year-old with a radiant smile and limitless sense of humor. Alex is an avid actor and violin player, and the amount of nurturing and compassion he shows his little sister is well beyond his 14 years.
The wonderfully artistic Alex has spent hundreds of days at Cook Children’s throughout his life, and the curious Maddy has logged many hours in the hospital as well. Combined, they see 15 specialists. Imagine keeping track of appointments with so many doctors. Kids with complex medical needs require this sort of ongoing specialized care to survive, and it’s not always in one place. In fact, this Texas family has traveled to Ohio and Maryland for treatments.
Many children with medical complexity must rely on Medicaid for their life-saving care from many pediatric providers, sometimes across state lines. Unfortunately, the state-by-state variability of Medicaid programs and lack of a coordinated care plan often creates a fragmented care system. These children and their families face enough challenges — they deserve to have a tailored health home to help organize and coordinate their care to ensure it is as effective and seamless as possible. We can and we must do better.
The good news is that there is a way to addresses many of these barriers, including access to out-of-state care and the lack of adequate coordination among multiple healthcare providers, while also reducing costs.
Rep. Kathy Castor, D-Fla., and I, along with Reps. Gene Green, D-Texas, Dave Reichert, R-Wash., Anna Eshoo, D-Calif., and Jaime Herrera Beutler, R-Wash., came together to introduce the Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act), legislation that would improve care for children with the most medically complex conditions who rely on Medicaid. It would also reduce spending by as much as $13 billion over 10 years by tailoring medical care to these kids’ unique needs, allowing them to access multiple providers and services when needed.
The ACE Kids Act addresses the challenges identified by families like Alex and Maddy’s and works within the existing structure of a state’s Medicaid program, including those with Medicaid managed care. Children, families, and providers would have the option to participate in the program, it would not be required.
Bipartisan support continues to grow for this bill. In both chambers of Congress, we have the support of dozens of lawmakers — both Republicans and Democrats. I am also pleased to report there is widespread support in my home state of Texas. Cook Children’s, Texas Children’s Hospital in Houston, and Children’s Health — Children’s Medical Center Dallas have voiced their support, as have primary and specialty care providers and family advocates. Many lawmakers from Texas have also given their vote of confidence by signing on as cosponsors.
Under the ACE Kids Act, children like Alex and Maddy would benefit from a health home model of care tailored to meet their unique needs. They could focus more on just being kids.
As a member of the House Energy and Commerce Committee, I know there is a strong appetite in Congress on both sides to work together on solutions. I look forward to working with my colleagues to seize this opportunity to give our nation’s sickest children better care and save taxpayers some money by passing the ACE Kids Act this year.
Rep. Joe Barton, a Republican, is vice chairman of the House Committee on Energy & Commerce. He represents the 6th Congressional District of Texas. You can follow him on Twitter: @RepJoeBarton.
