A northwest Iowa woman is in Washington, D.C., along with dozens of other parents, to show their support for Medicaid coverage. Wendy Larson of Odebolt is taking part in “Speak Now for Kids Family Advocate Day.”
The group is calling on Congress to pass the ACE Kids Act of 2015 that is designed for children with complex medical conditions.
Larson’s daughter, Katelyn, was three months old when her heart enlarged to twice its size and she needed a heart transplant. “Seventy-four days we waited, 28 days on the transplant list, before she got her new heart,” Larson said. “We were just scared for her life on a minute-by-minute basis, never knowing if she was going to pull through or not.”
Roughly 3 million children nationwide have complex medical conditions and two-thirds rely on Medicaid to pay for that treatment. Larson said, while her family is grateful for the Medicaid system, the ACE Kids Act would help organize and deliver care. “We’ve had multiple issues and difficulties with insurance situations, and to have that streamlined and not to be in charge of that, not to have that as a huge stress on us…trying to coordinate that…it will just be a huge relief for us and so many other families,” Larson said.
Larson’s daughter is now two-years-old and doing well. She received the heart transplant at Children’s Hospital and Medical Center in Omaha. Larson said her family depends on Iowa’s Medicaid program as Katelyn’s medication cost $20,000 a year, plus there are annual biopsies and quarterly cardiology appointments.