Shannon and her son Luke live in Branson and both rely on Medicaid to help cover their medical expenses. At age 29, Shannon was diagnosed with myasthenia gravis, an autoimmune neuromuscular disease. Myasthenia gravis occurs when the brain doesn’t communicate properly with the muscles leaving people with uncontrollable weakness and difficulty coordinating movements. One of the multiple medications she takes for myasthenia gravis costs $1,000 per month. Without Medicaid, there’s no way Shannon would be able to afford the medication she needs to treat her condition. Despite the fact that her illness makes working and moving very difficult, Shannon continues to work and raise Luke who has his own health problems due to a car accident. Shannon said, “I’ve always worked as much as I could. I’m not one of those freeloaders, but when you find out you’re sick, you’re just bankrupt.
Luke was in a car accident two weeks before his 18th birthday. The accident left him paralyzed from the chest down. Luke now has a feeding tube, requires catheterization to go to the bathroom, and can’t get out of bed or move without help. Despite having Medicaid coverage, Luke still isn’t able to get all of his health care needs covered. In order to prevent infection, Luke should be changing his trach every month but Medicaid only authorizes his trach supplies every 3 months. Medicaid also won’t cover the costs for an FES bike, a restorative therapy allowing Luke to exercise his legs through nerve stimulation. Using an FES bike on a daily basis has been proven to help incomplete spinal cord patients like Luke with bowel and bladder control and could potentially help him regain motor function. Yet, the closest FES bike to Luke’s home in Branson is 75 miles away. Luke’s parents make the drive once a week, but if Medicaid covered the cost of a bike closer to home, Luke might be able to benefit from the therapy and regain some motor function below his chest. As difficult as it is to be 20 years old and paralyzed, Luke still is hanging on to hope that a cure will be found and he’ll regain some of the muscle function that he lost.
When Shannon was asked what having health insurance meant to her and Luke, she replied, “It means everything. In order to survive we have to have it. Even people who aren’t living with a disability need health insurance.” Unfortunately, Shannon’s husband is one of roughly 486,000 Missourians who are currently uninsured. His job doesn’t offer insurance to employees until after two years. But if the plans are $500-$600 per month, their family won’t be able to afford it even if it’s offered. Because of his lack of insurance, Shannon’s husband can’t get medicine to help with his hip and joint problems that occurred after he was hurt on the job.