As Congress continues working on legislation that could impact the health care of all Americans, the Lett family is delivering an important and timely message on Capitol Hill.
Nationwide Children’s Hospital patient, Noble Lett, 6, and his family will join other pediatric patients and families from around the country to meet with their members of Congress and share their personal health experiences, including discussing the importance of federal funding for children’s health care as part of the 2017 Children’s Hospital Association’s Family Advocacy Day, taking place July 12-13 in Washington, D.C.
At three days of age Noble was diagnosed with Prader-Willi Syndrome (PWS), a complex, multi-systemic genetic disorder with characteristic clinical features caused by a defect in chromosome 15. At a young age, Noble’s diagnosis required immediate treatment and preventative care from a multidisciplinary team of neonatologists, gastroenterologists, geneticists, otolaryngologists, urologists, endocrinologists and ophthalmologists. Noble also regularly attends physical therapy, occupational therapy and speech therapy as part of his early intervention treatment.
Because of the early diagnosis and prompt multidisciplinary care, Noble, a typical curious soon-to-be first grader, has been able to meet most of his developmental milestones. Just as remarkable, Noble has not been hospitalized since birth, a rarity for someone with PWS.
Noble’s mother, Crystal, credits much of his success to having access to healthcare insurance coverage. Although Noble’s visits to Nationwide Children’s have thankfully decreased during the past three years, the costs of Noble’s current therapies, which include daily growth hormone injections and more than 150 physical, occupational and speech therapy sessions are eased thanks in large part to federally-funded healthcare programs like Medicaid and the Children’s Health Insurance Program (CHIP). Noble is one of more than 30 million children receiving access to pediatric services through these funding programs.
Because of government assistance medical programs for children, 95 percent of U.S. children have health insurance, including Noble. Without this much-needed funding, the Lett family would have been underinsured, responsible for high monthly premiums and out-of-pocket expenses and forced to make difficult medical decisions because of the cost of care at the time of Noble’s diagnosis.
“Thanks to Medicaid and CHIP benefits, Noble has been fortunate enough to receive quality health care that has significantly improved his life,” said Crystal Lett, Noble’s mother.
“Ensuring that all children have access to screenings, preventative care and pediatric specialists is a national bipartisan issue of the utmost importance,” said Steve Allen, MD, Chief Executive Officer, Nationwide Children’s Hospital. “Medicaid and the CHIP program allow for children like Noble to readily access the care they need when they are young which in turn enables them to grow into healthy adults.”