Karen is currently a preschool teacher’s aide and mother of two sons from Palmyra, MO. 17 years ago, Karen was diagnosed with MS at the age of 34 when her oldest son was four years old and her youngest son only four months old. Despite her health, she continued to work full-time until chronic fatigue made it necessary for her to stay home. After fighting for it for two years, she was finally given disability benefits in 2005. Since then, she has gone through a divorce, bankruptcy, and is now happily remarried.
Following her Christian values, she decided to marry rather than just live with her now husband. But, because of the record low Medicaid eligibility requirements in Missouri, her husbands’ Social Security Retirement disqualifies them from Medicaid benefits. Because of her disability, she does qualify for Medicare, but she doesn’t have Medicaid to fill the large coverage gaps. Though she is grateful for the care Medicare does provide, she recalls being very overwhelmed by the amount of paperwork involved in the application process. “It’s absurd the amount of paperwork required every few months and the hoops you have to jump through.” she says. Also, it did not make her health care affordable since she does not get any help from Medicaid with her Medicare Part B or Part D Premiums.
This meant her MS medication copay was a massive $3000 every 3 months. Not being able to pay this, she contacted the drug company and got her medication from them directly. On this process, Karen says, “I contacted the manufacturer of the drug, Novartis, after finding out what the medication was going to cost me. This is the only way that I can continue to take this medication that is keeping me in remission. But again, I continually have to send numerous documents to them to verify my need.” Also, every time she goes to the Neurologist, with this being a “specialized” doctor, the appointment copay is $50. Her other medications that she finds necessary to take for this disease range anywhere from $50-$200 a month, so she can find herself rationing dosages or taking pills every other day to save medicine and money. “Sometimes I have to take half the recommended dosage of my MS meds”, she says. Karen has also just recently found that she requires dental work and new glasses lenses which Medicare does not cover, only adding to her already burdensome medical expenses.
Karen has testified about her experiences before congress and been to lobby days as a member of the MS Society government relations committee and MO task force. She puts her faith in God for continued health and wants to continue reaching out and assisting others with MS and other diseases, however, the physical and financial toll of her illness makes it difficult to travel, a reality many people in Missouri and across the state face every day.