JOAN’S BLOG – MARCH 18/19, 2009- THE ALZHEIMER’S ASSOCIATION’S WISH LIST

I have previously mentioned that the National Alzheimer’s Association sets the lobbying priorities for our trip to the Alzheimer’s Public Policy Forum in Washington, DC. Yesterday I received their  “ lobbying wish list” (listed at end of blog) for this year’s forum.

It is important that everyone who reads this understands – although we delegates must present and discuss the specific AA list with the legislators with whom we meet, it does not mean that we cannot include OUR personal stories. Yes, our time with each legislator and/or aide is limited, but I can attest from last year’s trip, that we were able to present personal stories and ideas, as well as the AA agenda. Of course, some legislators and aides were more receptive than others, but that is to be expected. When I told Senator Martinez’s aide about my own husband and my website, he told me about his grandfather’s Alzheimer’s Disease and the impact it had on his grandmother. I can assure you that the priorities you listed on the message boards will be included in the package I hand out and speak about. And I will speak to everyone and anyone who will listen.

For those of you who are not aware of it, there is a bipartisan Alzheimer’s Study Group in Washington DC. Their mission statement is:

The ASG's core mission is to develop a high-level, National Alzheimer's Strategic Plan.

This plan is to be a "national call to action" to improve care today and speed the development of more effective treatments for tomorrow. It will do so by focusing all appropriate public and private stakeholders on finding new solutions to treat and care for patients, and to better support their caregivers.
The ASG will develop this plan in consultation with a broad community of the country's leading experts on Alzheimer's and related fields including basic science, translational research, public health, clinical care, and caregiving. The ASG will use innovative web-based technologies to collaborate and communicate with these experts in developing the National Alzheimer's Strategic Plan. During this process, patients, caregivers, advocates, and the public will also be engaged.
Experts, together with the broader community of interested individuals, will have the opportunity to identify barriers, metrics, existing strategies and new initiatives targeting each of the ASG's stated goals.

I urge you to click this link and read through their website. Two of the members – Justice Sandra Day O’Connor  (whose husband has Alzheimer’s Disease) and Newt Gingrich will be testifying before a Senate committee when we are in Washington DC. The last I heard, there was time built into our schedule to attend the hearing. You can click on the Washington DC side topic to view video from their testimony at last year’s hearing. 

These are this year’s legislative priorities per the National Alzheimer’s Association:

1. Increasing fiscal year 2010 Alzheimer research funding at the NIH by $250 million with a goal of reaching $1billion per year in funding in fiscal year 2011 - Accelerates the investment in medical research to develop the capability to prevent Alzheimer's Disease in ninety percent of individuals by 2020.

2. Establishing the Alzheimer's Solutions Project Office within the federal government backed by an appropriate scale of investment- leads national efforts to reengineer dementia care delivery and, ultimately, prevent Alzheimer's Disease.

3.Phasing out Medicare's two-year waiting period so individuals with Alzheimer's Disease are eligible for Medicare immediately after they receive their determination of disability- improves access to health coverage for individuals with Alzheimer's as part of health care reform.

Remember – your stories and ideas count – add comments to the existing message board topic - My#1 priority for Alzheimer's Legislation.

Stay tuned for tomorrow’s blog – Sid’s plans while I am in DC.

Feedback to joan@thealzheimerspouse.com

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