A 17-year-old Louisville resident recently took a four-day trip to Washington, D.C., to convince federal lawmakers from Kentucky to support legislation that aims to cut health-care costs and improve care for sick children.
Kosair Children’s Hospital had tapped Anna-Maria Beck, a soon-to-be senior at Sacred Heart Academy, as a local envoy to get the legislators’ support for the Advancing Care for Exceptional Kids Act (ACE Kids Act), which would make it easier for kids with medically complex conditions to get the care they need under Medicare and Children’s Health Insurance.
About 3 million children in the United States suffer from medically complex conditions, and about 2 million are enrolled in state plans under Medicaid or CHIP.
The ACE Kids Act would create a nationally designated children’s hospital network to better coordinate and integrate care for the children, which would lower Medicaid spending and improve health outcomes.
Kosair and other members of the Children’s Hospital Association, which represents 220 hospitals nationwide, had identified about 40 children with complex medical conditions to visit the nation’s capital to help gather support for the ACE Kids Act.
Beck was diagnosed with an inoperable brain tumor when she was 7 years old. She has had 12 brain surgeries, including some to reduce the tumor’s size. One of the surgeries, in Boston, took 11 hours.
During her trip to D.C., Beck spent time with Republican Sen. Mitch McConnell, and U.S. Reps. John Yarmuth, D-Louisville; Brett Guthrie, R-Bowling Green; and Andy Barr, R-Lexington.
Beck told Insider she especially enjoyed that the commonwealth-based legislators displayed in their offices Kentucky-related knick-knacks, including Kentucky Derby signs, UofL paraphernalia and a big bottle of bourbon.
Beck would tell the politicians her story, and her mother, Dr. Maria Beck, would give the parents’ perspective.
“They were all extremely kind,” the mother said.
Beck said she viewed her advocacy trip to D.C. as an extension to her volunteering in Louisville, which began during her second round of chemotherapy when she was 11 or 12. She held a bake sale and raised more $8,000. She said she wanted to help pediatric patients and give back for the “amazing” care she has received. In 2014, Beck was honored during the Bourbon & Bowties fundraiser for her support of the hospital. Last year, Beck was named Outstanding Youth in Philanthropy by the Louisville chapter of the Association of Fundraising Professionals.
Beck had a full schedule in D.C. that also included doctors’ visits and lunch with a relative.
“It was fun, but it was crazy busy,” Beck said.
For some downtime, her itinerary included a party involving music, food, a cartoonist who drew pictures of the kids, and people dressed in superhero costumes.
Help families, lower costs
Thomas D. Kmetz, division president of Women’s and Children’s Services and Kosair, told Insider the hospital chose Beck in part because of her fundraising and advocacy for the hospital. Kosair leaders figured that by meeting Beck and hearing her story, legislators would better understand how children are affected by complex conditions.
Kmetz said the ACE Kids Act would help families navigate the complex and confusing health care infrastructure so they can focus more on their children’s health.
Many of the children have several doctors, and sometimes what those doctors say is not necessarily coordinated, Kmetz said. Today, parents pretty much are on their own in figuring out where to go for what procedure and whom to ask for guidance.
Beck has the benefit that her mother is a physician, Kmetz said, but many parents struggle to navigate the Byzantine medical system maze, especially because they often have to cross state lines to seek specialists.
Kmetz said Kosair and the Children’s Hospital Association want to provide help to families much in the way they help cancer patients who get advice from nurse navigators to improve coordination among doctors and hospitals to increase the likelihood that patients get better.
“That’s what we’re trying to do for these kids,” Kmetz said.
Beyond better outcomes for the young patients, more coordination among health care providers could significantly cut costs. The 6 percent of children with complex medical problems account for about 40 percent of Medicaid spending, Kmetz said.
A Kosair analysis showed it spent about $60 million in 18 months on 457 kids with complex medical challenges, or about $132,000 per child — and that’s just costs to Kosair and excludes doctor time, billing and drug regimens, Kmetz said. The kids averaged 4.7 admissions to the hospital during that period, spent 45 days in the hospital, and had two emergency room visits independent of their hospitalizations.
Kmetz said better care coordination can reduce costs for the state and for insurance companies and make lives easier for parents and their sick children.
Beck said she enjoyed her trip to D.C. and thinks she helped sway the legislators “maybe a little bit.”
Her mother said the family definitely will keep an eye on how the legislation progresses through Congress.
Yarmuth, Guthrie and Barr are supporting the House version of the legislation as co-sponsors. A McConnell spokesman told Insider Louisville via email that the senator enjoyed meeting Beck, “appreciates her sharing her story with him and his staff and applauds her for her advocacy work on behalf of children.”
The spokesman said the senator “is reviewing the legislation.”
Beck’s illness keeps her out of some more physical activities such as sports, requires her to take medication and often makes her tired. She’s on her eighth round of chemotherapy. Some treatments and doctors’ visits require trips to Boston and D.C.
Though the family has good health insurance, they incur lots of out-of-pocket costs for travel, months-long hotel stays and tutors.
Despite the challenges, Beck said she tries to stay positive and, in many ways, acts like a typical teen. During a recent interview, as she sat on a couch in her parents’ Lexington Road area home, she occasionally glanced at her smartphone, which was wrapped by a neon-colored case.
She also likes helping little kids learn how to swim, the performing arts, photography and painting her nails.
“I’m fabulous right now,” she said. “That counts for something.”
After graduating from high school next fall, Beck said she plans to attend college somewhere close to home.