Children who have complex medical conditions and illnesses live with health, financial, and social challenges. On average, kids with complex medical needs require the attention of five to six specialists, with as many as 20-30 health or allied health professionals who play a role in delivering the vital care they need.
Families of children who are diagnosed with cystic fibrosis, or “CF,” know this process all too well. Cystic Fibrosis is a chronic, life-threatening disease that affects the lungs, pancreas, and other organs.
The daily therapy routine can be daunting on its own, and those with CF have an intense regimen. Typically, they wake up early each morning to begin their airway clearance treatments. They will strap on their oscillation vests, which rapidly vibrate for about an hour to help loosen and thin the fluids building up in their lungs. This is done two to three times a day, in addition to taking enzyme pills with every meal or snack.
The average CF patient takes about 45 pills every day. Convincing kids to eat their vegetables is hard enough, imagine trying to wrangle them to sit through therapy and swallow handfuls of medicine every day.
To add to this burden, individuals with CF are often hospitalized every few months due to infections or common sicknesses. And the children’s families and loved ones are responsible for wading through the complicated process of coordinating specialized care from pulmonologists, gastroenterologists, and nutritionists.
Children who have illnesses and conditions such as cancer, congenital heart disease, down syndrome, and cystic fibrosis are considered “medically complex” under Medicaid. The treatments they receive are not easily administered and are extremely expensive for families who rely on state Medicaid programs.
Nearly two-thirds of the three million children in this country who have complex medical conditions receive Medicaid coverage. But this accounts for only about 40 percent of costs for the children.
If the specialized care they need cannot be found at their nearby hospital, families endure needless obstacles and long delays when they visit hospitals across state lines. Medicaid guidelines currently limit options for patients who seek treatment from specialists outside of their state. The Children’s Hospital and Medical Center in Omaha has notified me that more than 20 percent of their medically complex patients travel from other states to receive care.
Throughout my career, I have listened closely to children and their families with medically complex illnesses as they advocated for common sense solutions. One of them was the Advancing Care for Exceptional (ACE) Kids Act, and after hearing their stories and receiving their input firsthand, I cosponsored the legislation.
Introduced by my colleague Senator Chuck Grassley, the bill allows for kids to receive treatments across state lines without delay. It would encourage hospitals to coordinate care so their patients can get treatment across state lines more easily, while lowering costs and improving quality outcomes for these children along the way.
I am happy that Congress, with my full support, recently passed the ACE Kids Act.
“This is monumental moment for us,” Liz Lyons, the Children’s Hospital director of Advocacy and Government Affairs said, “as we have worked on ACE Kids for 6 years. We want to thank U.S. Senator Deb Fischer for her unwavering support for children in the state of Nebraska, and we are grateful to Congress for their bipartisan support to pass the ACE Kids Act.”
Families move mountains to ensure their children get the life-saving care they require. The last thing they need is government bureaucracy complicating the process. I look forward to the ACE Kids Act receiving the president’s signature and becoming law.
Thank you for participating in the democratic process. I look forward to visiting with you next week.
Deb Fischer is a United States senator who represents Nebraska.
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