By Sandra L. Fenwick, President and CEO, Boston Children’s Hospital
Last summer, 10-year-old Hunter VanBrocklin visited Washington D.C., and accomplished things he would never have believed possible—things that weren’t possible for him just a year earlier. Hunter, who has cerebral palsy, bypassed the ramp at the Lincoln Memorial, and instead climbed all 58 steps with the help of his Great Dane service dog, Wendy. He crawled, without braces or knee immobilizers, through vents at the International Spy Museum. And he met with lawmakers from his home state of Maine to share stories about the care and services that made his visit—and his quality of life—possible.
I had the honor of accompanying Hunter as part of Boston Children’s Hospital’s annual trip to our nation’s capital as part of Family Advocacy Day, but it was Hunter who did all the work. He met with—and charmed—his senators and representatives, speaking with them not as a child, but as one of their constituents, asking for help.
Hunter talked with them about the Advancing Care for Exceptional (ACE) Kids Act, a proposal that would make it easier for children with medically complex conditions who rely on Medicaid to get the care they need, even if they have to travel out of state. He told them about the non-profit Service Dog Project that paired him with Wendy when she was just a puppy, providing him with the kind of mobility and independence he could never have achieved with a walker.
New Year, New Landscape
Flash forward 11 months, and all of it is at risk. Not just everything Hunter stood up for, but everything that enabled him to go to Washington and stand before his delegation in the first place.
Earlier this summer, Congress sought to rewrite our nation’s healthcare law without House or Senate committee hearings. The result was the American Health Care Act (AHCA)—legislation that did significantly less for children at a time when we must do more.
Complex Medical Needs
At Boston Children’s, we are keenly aware of just how much more our nation’s children need now than at any other point in history. For nearly 150 years, Boston Children’s has been committed to innovation in both clinical care and bench-to-bedside science. As a result, we have been able to care for and improve life and health outcomes for medically complex children, including those with congenital heart conditions, childhood cancers and complex neurological and neurosurgical conditions. Our capability to heal is accelerating as we develop new approaches including gene therapies, stem cell transplant procedures and fetal surgical interventions.
As a result, we have seen significant growth in the number of complex patients we serve—patients who stay longer, require more resources and a broader range of interdisciplinary specialists, and frequently require substantial support for their whole family. A child with needs as complex as Hunter’s is no longer the exception, but the expectation.
In attempting to rewrite our healthcare law, Congress effectively eliminated children and their families from consideration. Thankfully, the Senate placed their voices back where they belong, and turned a spotlight on the needs of children supported by Medicaid—about half of all the children in the United States. Our commitment to ensuring the care and well-being of our nation’s underserved and at-risk children has never been stronger.
Safeguarding the Future
At Boston Children’s, we are proud of the responsibility that comes with being the #1 ranked pediatric hospital in the nation—to deliver world-class care to all children and to advance pediatrics through groundbreaking research and innovation.
Our future as a society hinges on the health and well-being of our children. We are caring for future leaders in business, politics and the military; the teachers, nurses, scientists, doctors and artists who will define our next generation. What we do for children and families now will define what tomorrow looks like for us all.