Kyleigh, 9, has lived with uncontrollable seizures since she was three years old. In the early days of her diagnosis, Kyleigh was in the hospital frequently because of her seizures. Every time she returned, she was prescribed a new, expensive medication -- and eventually would try eleven antiepileptic drugs in five years.
The frequent hospital stays made it difficult for Kyleigh’s mother, Tiffany, to be at work regularly, and she lost her job as a result. Even though Kyleigh received health insurance through her father’s employer, it was still hard to keep up with the cost of co-pays and coinsurance. When the cost of Kyleigh’s first hospital stay reached $10,000, the hospital social worker encouraged Tiffany to apply for Medicaid. At first, Tiffany resisted, fearing that there was a stigma associated with being on Medicaid. When she finally applied and was accepted, the news was a relief. Medicaid covered the full cost of the hospital stay, and Tiffany could worry about paying for rent and Kayleigh’s special ketogenic diet -- not her hospital bills.
“Medicaid was about survival.” Tiffany said. “I have a college education, but I had no way to work because Kyleigh was so sick. She couldn’t even do half-day preschool because of her seizures.”
Today, Kyleigh has seizures nearly every day. Medicaid helps to supplement the cost of her medications and therapy, and allows her to see epilepsy specialists. Without Medicaid, her family would pay thousands of dollars per month, even with their private insurance. Tiffany says that supplemental Medicaid “allows my family to find doctors that actually understand Kyleigh’s needs, without wondering how we’re going to pay for them. Medicaid is about survival -- it allows me to get the care I need to save my kid. In March and April, we had sixteen doctors’ appointments. We would be filing for bankruptcy if we didn’t have Medicaid.”
Medicaid also helps Kyleigh be a part of her community, and attend school with other children her own age. At school, Kyleigh receives help from a Medicaid-funded school health aide, who is with her at all times to provide seizure care and help with academics. Medicaid also pays for a modified stroller to help Kyleigh when she becomes too tired to walk. Tiffany says “we don’t just deal with epilepsy, but with all the other things that come with it. Nobody chooses this path -- but Medicaid provides Kyleigh with what she needs to experience life.”