ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, April 2013
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PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.
M. Ellenbogen | 05-01-2013
Below are my talking points for public comments.
The official 2013 Alzheimer's disease Facts and Figures Report was released on March, 19 and I was very fortunate to be able to speak with all of those who contributed to it. I wonder if others see what I do, or does it take someone with AD to recognize what we are headed for? There is a distinct lack of action when it comes to combating this disease. Here are some of the numbers that worried me.
This year, the total cost of caring for people with AD, and other dementias from sources such as Medicare, Medicaid, or out-of pocket will reach $203 billion; this number will increase to $1.2 trillion by 2050. This cost is 3 times higher for individuals with AD versus those without AD
For over 125 years the NIH has been tackling the most progressive diseases. We all know that funding research into diseases is something our government does very well, as evidenced by the decrease in deaths from cancer, HIV/AIDS, heart disease etc. We need the government to get back on track, and put forth the same type of commitment to Alzheimer's.
As many of you know, I and many others are campaigning to have a person living in the early stages of Alzheimer's disease accepted onto the advisory council. As of our last meeting many of the council members have expressed interest and a willingness to have someone, like me who is living with the disease, on the council. This is a great step forward, but we are not quite there yet. It is my hope that by the next meeting the HHS will have a person living with AD on the NAPA advisory council. I would like to thank all the members who are supporting this proposal.
I would like to suggest that the following qualifications be considered when selecting that person.
I would like to thank you for allowing me to be able to participate here, and I would like to make a recommendation if I may. From my experience speaking to this council I feel it would be of benefit if there was a question and answer session, either after each speaker, or at the end of the session. This will prevent information from being misinterpreted, and will serve as a learning platform for all the participants.
Additional comments to my talking points above.
I feel it is extremely important to have someone in the Whitehouse representing people with AD/dementia. I think they did for HIV/AIDS. So the question is: Why are they not willing to have someone in the same capacity for AD/dementia? There are so many more people dying from this disease. If the process worked for HIV, will it not have similar results for those with AD/dementia? Let's change the stigma around this disease. Let's show the criticality and urgency, because sometimes I just do not see it.
I would like to thank the international guest we had for their great input, and some of the great progress they made. I almost felt like I would have been better-off in their country in order to get the help I need. This is the United States of America, and we are supposed to be the leaders. Why are we so behind on this issue?
On another note, I am pleading to the readers and audience this site reaches: there are so many people living with this disease, and caregivers who have had to deal with it, why is it that these people do not have any representation at the NAPA meetings. Please make a point of doing that because your stories do matter. Especially for those living in the DC area.
J. Mishan | 04-29-2013
What a wonderful live-streaming meeting this morning! It is so inspiring and empowering to be "internationalizing" this effort. It makes us in Hawaii feel linked with the planet on these crucial efforts.
Had a question: when will the proceedings be available on YouTube?