Nicholas, 8, from Connecticut, has lived with epilepsy and cerebral palsy since he was six months old. Nicholas is one of nearly 9 million children waiting for Congress to reauthorize the Children’s Health Insurance Program (CHIP).
At an early age, Nicholas was diagnosed with infantile spasms, a rare form of epilepsy, and suffered with 50 to 60 seizures per day until he was almost 3 years old. Now, Nicholas has focal seizures and just last year he experienced a major focal seizure that could not be stopped with any emergency medication. The seizures continued for over an hour and a half. At the hospital, he was intubated and placed in the PICU. It was the worst and scariest seizure for Nicholas and his family to go through.
Most recently, an adjustment to Nicholas’ medication has allowed him to be seizure free for over a year. However, there is no way to know if or when his seizures may return.
Due to his complex conditions, his family struggled to keep up with medical bills. For the past 5 years, the family has relied upon HUSKY B, Connecticut’s version of the Children’s Health Insurance Program (CHIP), to provide high-quality, affordable care for Nicholas. HUSKY B helps cover Nicholas’ medication and hospital costs, as well as things such as pull-ups® and PediaSure®.
CHIP provides low-cost health insurance to children from low income families, as well as children from middle-income families, with complex chronic conditions and disabilities. The program is primarily funded by the federal government and administered by states, like Medicaid.
CHIP funding expired on September 30, 2017 and has not yet been reauthorized by Congress. States have been pursuing creative ways to keep the program going, but unless Congress acts soon, children like Nicholas will loose their health insurance.
Nicholas’ family has been informed that funding for HUSKY B coverage is scheduled to end January 31, 2018. Children across the country are facing similar deadlines and time is running out for Congress to act. Almost 9 million children in the U.S. – children just like Nicholas – depend on CHIP. Nicolas’ family is trying to figure out how they will be able to make ends meet if they loose CHIP. Nicholas’ father, Bill, says that losing CHIP will be financially devastating for the family. Congress is looking at a temporary funding exemption but what we need is to fully reauthorize the program. While there is bipartisan support for CHIP, Congress hasn’t been able to reach agreement on how to fund the program.
Learn more about CHIP and ask Congress to fully reauthorize the program today at advocacy.epilepsy.com/CHIP. Does your child rely on CHIP? Please share your story at bit.ly/storyEF.