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                 GET YOUR ORANGE ON!

It’s hard to describe the elation I felt in Washington, D.C. last week.

No that wasn’t  a typo! It was pure joy to meet with MS activists from all over the country for our Public Policy  Conference. That’s the annual event where we meet, share information and then visit our representatives  to advocate for legislation that will benefit the lives of people with MS.

You couldn’t  miss us – we were dressed in ORANGE as we walked and rolled down the hallways. No one really seems to know why, but that is our signature color. (We could do a lot worse!)

This year, we spoke to legislators about four main issues:

Ending surprise medical billing –  the demoralizing situation where a patient gets a medical bill from an out-of-network provider that is considerably more than they understood it would be,

Curbing the obscene rise in the cost of MS medications ($200,000.00 and more a year in some cases)

Funding more research into both a cure for MS and for disease-modifying therapies in the meantime,

Requiring that people with disabilities be  involved in  planning for emergencies. As I said to the legislators and their staff, this one was particularly meaningful for me.  In the past, I worked on the 10th floor of a government building and I discovered that there were several problems with the existing plan for getting people with disabilities out of the building in a fire. These were problems that I’m sure would have been  spotted  at the outset, if someone with a disability had been involved in the initial formulation of the plan.

Time will tell, but the response seemed very positive. As one of the conference participants said, it is very effective to look a legislator in the eye and ask them to support bills that could profoundly affect our lives. It was also very powerful to tell and listen to others express the personal reality of living with this disease. Maybe I’m naïve, but I can’t help but think we left Capitol Hill  (and the chance for a cure)  a little better than we found it.


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