Julie is a Southwest Missouri resident living with chronic multiple sclerosis, an autoimmune disease that affects the central nervous system. Alongside this debilitating disease, Julie also lives with anxiety and depression and severe arthritis. Julie is now married to her partner Alicia and is on her health insurance but states that before same-sex marriage was legal, she was uninsured and oftentimes unable to receive the care she needed. Julie states that over the years she has had to get creative on how to make ends meet and find the medication she needs. During a two month time period of being uninsured, she participated in a clinical study so she could receive medication.
The private insurance provided by her partner’s job includes high deductibles including a $5,000 pharmacy deductible that they reach by paying out of pocket each year. Julie now has to start infusions and was originally told this would cost her $2,000 a month. After many phone calls, she was able to get Medicare to cover the infusions but this still left her with a $200 per month bill. She applied to the hospital’s charity program and they agreed to cover the rest of the cost. Julie says she “lives terrified everyday”, not knowing which health problem will be the one that brings them to bankruptcy. Julie and her partner have two children and are considering moving to a state like New Mexico where Medicaid has expanded and where they feel more safe as a couple.
Despite now having a private insurance plan, SSI disability and now aging into Medicare, Julie and her family are buried in medical debt and spend a significant amount of their time navigating their family’s many medical bills and ever changing insurance plans. As Julie states, “I call every day to get my bills sorted and every time I call I am given different information. It is so frustrating”.