Lobbying for MS


I have been invited by the local chapter of the MS Society to participate in the annual “Legislative Day” at our state capitol in Richmond, Virginia, on Monday, January 30, 2012.  I’m really looking forward to it.  The Society has been great about doing some training via conference call and again the night before we go to the capitol.  Additionally, they set up the appointments with the various members and their staff and they provided us with each member’s website.  They also provided us a list of issues and particular bills that the Society is pushing and would like us to lobby for on their behalf.  Thankfully I am on the same page on all of these issues, so it won’t be difficult to tell my personal MS story and suggest how to the legislators that they vote in favor of the bills that are supportive of our cause.

This is a new facet to my life with MS.  Four years ago when I was diagnosed, I started on this path with very little understanding of any of the issues inherent to this disease.  I just knew that I had it and I needed to learn how to deal with it.  I’ve since learned more than I really wanted to know – firsthand.   I’ve dealt with the economic, pharmacologic and relational aspects of this disease.   So much of each of those issues comes down to this:  without support, without resource, we are marginalized and our contributions to this country, this planet, this life will be limited.  You cannot legislate morality.  However, our legislators have a responsibility to We The People, to protect us from discrimination and being taken advantage of due to the state of our health.  I look forward to this new chapter in my MS book.  I’m starting in Virginia – but I’m going to Washington.

In an ironic twist, I’m supposed to call the administrator of the patient assistance program for my injectable, disease-modifying pharmaceutical manufacturer on Monday as well, to learn whether or not I qualify for their program.  I’ve blogged about this yearly, very stressful, situation before.  If I don’t qualify, the MS medication that I’m on is $41,000 per year.  I think I’ll make that call with one of the politician present and let them see for themselves what a patient goes through to try to get the drugs their doctors tell them they need.  I’ve already had to go from full- to part-time at work, thereby reducing my taxable income.  Without that medication, there is greater likelihood that I would not be able to work at all in the not too distant future.  I would not only not be a tax producing citizen for this country, I would most likely be a draw on a social program or two.  This seems incredibly shortsighted on many fronts, not the least of which is my ability and potential being wasted due to our inability to protect a vulnerable population – those of us afflicted, due to no fault of our own – with a progressive, potentially physically and mentally limiting illness.

I’m asking each of you to participate on that day via technology.  The MS Society has set up a Virtual Advocacy Day so you can participate along with us through Facebook and Twitter.  Please visit this site for more information, and thank you in advance for your help:  http://main.nationalmssociety.org/site/Calendar/239362518?view=Detail&id=274740.

I’m going to teach the politicians a new saying “FUMS”!!!

 

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