JOAN’S BLOG – MARCH 11/12, 2009 – CARRYING YOUR MESSAGE TO CAPITOL HILL

When I arrived at the Alzheimer’s Public Policy Forum last year in Washington DC, I was like a deer in the headlights. Shocked and no idea where to turn. This year, I am quite a bit more savvy, and know what my role as a delegate entails. (Besides walking for miles and getting minimal sleep.)

The National Alzheimer’s Association determines its most pressing issues they want legislators to address. Last year it was more funding for NIH and a waiver for the 2-year waiting period after disability determination, for Medicare enrollment for those Alzheimer patients under 65. It was our job as delegates to lobby the lawmakers in our State Districts to pass these measures. On February 17th of this year, Congress approved $10 billion in scientific research funding for NIH. As far as I know, the 2-year waiting period has not yet been waived. If anyone knows differently, please post the information on the message boards.

I have not yet been informed of this year’s issues for which we will be lobbying, but I can tell you that we bring with us folders filled with stories from Alzheimer caregivers all over the country – people just like you and me who tell of the emotional, physical, and financial toll that Alzheimer’s Disease has brought to our families.

You have done a great job expressing your thoughts and desires for legislative change on the Message Board topic – The Alzheimer Patient Loses Again- and I encourage anyone who has not contributed to that discussion to do so. Write about your personal and financial struggles with AD, and what legislation you feel is necessary to address the problem.

I do have one other request. This one needs to be short – a few sentences at most. What ONE area do you feel needs the most attention?  I know there are many – that is what The Alzheimer Patient Loses Again thread is for. But in this case, I want to know if you had to prioritize, what ONE service do you feel would benefit you and the Alzheimer patient the most?  Please post under the topic – My #1 Priority for Alzheimer’s Legislation. Thank you.

Two more long distance doctor appointments today, so I will check in again much later.

Feedback to joan@thealzheimerspouse.com

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