Squeaky Wheels

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.
Learn more about self-advocacy at nationalMSsociety.org/selfadvocacy.

Susan Skoney, Blogger

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and daughter Hannah. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

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  • rbchakey1  Jul 3, 2013 11:03 AM
    Our daughter had a problem with social security also they would not approve her for disability but did give her supplemental security income which doesn't give her much to live on.Thank God she got medicaid at least it pays for her copaxone.I hope everything starts going well for you.God Bless.
  • krm5498  Oct 28, 2015 5:25 PM
    Hi Susan, I'd like to help you squeak. My fiance was diagnosed in September 2014, and we are on a financial tightrope. Last month I came down with pneumonia, sepsis and I was having issues with a long-standing female problem that left me needing blood transfusions. I was out of work for a month, which did nothing to help our finances. I couldn't even be sick, because there is no other income besides mine. I work two part time jobs for a total of 60 plus hours (without any overtime). I'm exhausted. I also have to make sure there's food to eat, clothes to wear, appointments are made and kept, etc. etc. My fiance cannot write to do his never ending paperwork or drive himself to his appointments. I do that. I also have a 17 year old daughter that I care for. It's a lot to do. Any financial relief would help. Did I mention that my fiance paid in to SS since he was 18 years old? So, I've started a petition. I'm squeaking. Would you mind to look it over and sign if you're in agreement? I'd appreciate it tremendously.
  • rmccann27  Nov 17, 2015 7:38 PM
    Hi Susan,

    I am also from Western New York! Not anymore! Too cold! Too hot! Florida..Can't win! I am trying to do SSDI and need advice! I have to see my Neuro next week and will find out about my second MRI this year (active). I found out in 2007 I had MS after seeing several doctors. I am getting divorced also...and my husband is taking me off insurance...Just need some help~

    Thank you for your time!~

  • Gswfll  Apr 12, 2016 4:32 PM
    Hi I am newly diagnosed and am shocked at the cost of copaxsone. I am on a Medicare advantage plan and my yearly cost I am told will be between 5000 and 6000 dollars. I am on social security but married and my spouse makes six digits I can afford the medicine but have talked to two people how said side effects worse then symptoms. I hate to spend the first copay 1000 and will reach the donut hole and all my other medications will become expensive. If I was not married I could get some assistance. I never gamble more than 20.00 I feel like this is a gamble for me. Tell me to be thankful I have the funds to possibly blow , thanks for letting me vent. LOL
  • Bonnie Burkley   Jun 10, 2016 10:28 AM
    I can relate to diability claim. When I was dx 36yrs. ago at age 33, I could no longer work and did not have enough hours. Need glasses refill desperately! Turned down by Medicare and SS. Please help! Have lost my vision once, now years later, scars have shown on back of eyeball affecting my vision. Please tell me what to do. Glasses will cost close to $600..,depend on husband's SS, of which I get 753$ and that helps maintain household! My Senators are Roger Wicker and Thad Cochran, who I have pleaded with to no avail! Help me, please!!