I want to be a squeaky wheel, a bee in somebody’s bonnet and a pain in someone’s backside.
I never considered myself an MS activist, but the lobbying efforts happening in Washington, D.C., to keep MS research funding in place along with my own personal experiences dealing with MS since 1999 has made me reconsider. I need to become more involved with the issues that all people with MS face every day—issues that range from building accessibility to health insurance coverage to the complex web of Social Security Disability, Medicare and Medicaid.
I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIG infusions after I experienced complications with one of the other infusible drugs. She ordered it, but my health insurance denied it on the grounds it was not an approved treatment for MS. I appealed; they denied it again. My doctor appealed with supporting documentation and they still denied her request. Many people have used IVIG for MS. Some other insurance providers cover the cost, but not mine. So I called a local TV station with a large news staff, some of whom are dedicated to consumer advocacy issues. They have started an investigation on my behalf and are considering a story on the bigger issue of who is really making our healthcare decisions. Stay tuned! This experience and my boldness made me realize that activism has many forms. You don’t necessarily have to go to Capitol Hill to be an activist—you just have to fight for what you believe in and need. Go to nationalMSsociety.org/appeals for more information on health insurance appeals.
Dealing with the Social Security Administration is a whole different ballgame, but they also need to level the playing field. I was denied Social Security Disability Insurance (SSDI) three times because at the time of my application I did not have enough working quarters immediately prior to my total disability. Even though I had dozens of years of continuous employment during which I paid into the system, I was penalized for being a stay-at-home mom. The rules and regulations must be changed to address the realities of those with MS who cannot rejoin the active workforce in order to establish their eligibility for SSDI.
Loopholes in the Americans with Disabilities Act still allow businesses, municipalities and even our healthcare system to pay lip service to the goal of providing disabled citizens meaningful access to public spaces. This is one thing we can all do something about. Complaining has its benefits. Squeaky wheels sometimes get greased. We people with disabilities must, as a class of citizens, speak up even when we think no one is listening. We must. Or else the drugstore will remain closed to me and anyone else who requires an automatic door. The local government office where handicapped parking tags are issued will remain inaccessible because of concrete stairs and the absence of a ramp or elevator. Even the front door to a local MS clinic will only open to patients with the help of others. So as a group, let’s advocate for each other, by advocating for ourselves. Become an MS activist, like me.
Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.