We can help them share their stories.
By Rick W. Merrill
Ask anyone who works in a children's hospital their motivation for their job, and the likely answer is, "It's the kids." I'm stating the obvious, but sometimes what seems obvious isn't so. The further you are from the bedside, the easier it is to forget.
I was reminded of this as I attended the Speak Now for Kids Family Advocacy Day in Washington, D.C., in June. Advocating for children is part of our roles as leaders in children's hospitals, and we're among many constituencies who visit congressional staff and members of the House and Senate to remind them of the work we do. We hope our messages stick and when making decisions about children's health, Congress and the administration act in children's best interest.
Unlike other visits to Washington, during Family Advocacy Day, I was not doing most of the talking. Alex, a 14 year-old with mitochondrial disease, carried the day. Articulate and wise, he shared his story. He and his 4 year-old sister Maddy, who also has mitochondrial disease, have complex medical conditions.
For them, health care is not only important; it's life-changing and life-sustaining. Because of the specialized care they receive, they can focus on the things they love like acting, playing the violin, learning and inspiring each other. Medicaid plays a critical role in their care, and Alex was quick to make this connection for lawmakers.
Lawmakers listened with keen interest. Hearing directly from a child makes it real in a way we can't. Their stories were front and center as policies affecting their care are debated. Seeing nearly 50 patients, their siblings, and parents and guardians trek all over Capitol Hill to make more than 150 visits with members of Congress was inspiring and a great reminder of the influence one child can have on behalf of so many others.
Sen. Johnny Isakson, R-Ga., a co-sponsor of the bill to reauthorize the Children's Hospitals Graduate Medical Education (CHGME) program and a supporter of the Advancing Care for Exceptional (ACE) Kids Act, thanked the families and observed when a family is well they will attest to having a lot of issues, but when a child is sick, the family will have only one issue— everything else pales in comparison.
Children's hospitals have the expertise and resources to help families navigate the most challenging issue they will face: the illness of a child. Their child is the center of their world and the center of ours. Let's help them share their stories.
Rick W. Merrill is the president and CEO of Cook Children's Health Care System and chair of the CHA Board of Trustees.
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