National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, April 2013

• M. Ellenbogen  |  05-01-2013
• J. Mishan  |  04-29-2013

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.

• As of 2013, an estimated 5.2 million Americans are living with Alzheimer's disease (AD)
• By 2050, up to 13.8 million Americans aged 65 and older are projected to be living with the disease
• Alzheimer's disease is the 6th leading cause of death in the United States; however, it may cause even more deaths than official sources recognize because of the way causes of death are recorded
• Alzheimer's deaths increased by 68% from 2000-2010 while the number deaths from other diseases decreased. Deaths attributed to heart disease, the number one cause of death, decreased 16%
• One in 3 seniors is dying with Alzheimer's or dementia; meaning they are dying AFTER developing the disease. In 2013, an estimated 450,000 people will die WITH Alzheimer's
• In 2012, over 15 million Americans provided 17.5 billion hours of unpaid care for those with AD or other dementia
• 80% of the care provided in the community is done so by unpaid caregivers
• The value of this care is approximately $216 billion
• There are biological and physiological risks associated with providing care. Family members are at greater risk of illness including depression and stress, which in turn can lead to a weakened immune system
• It is projected that the United States will need an additional 3.5 million health care professionals by 2030 to care for individuals with Alzheimer's. This shortage of geriatric specialists is seen across professions from physicians to social workers

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.

• The person should have the diagnosis of early stage Alzheimer's disease
• Should be in or have been in a clinical trial so they understand the issues and benefits
• Must be confident, and articulate when discussing the issues related to AD
• Has first-hand experience and understanding of the issues AD people are dealing with
• Has a well-rounded understanding of what issues caregivers are dealing with
• Coming from a business background would be advantageous
• Has an understanding of government and politics
• Should embrace technology
• Are loyal to the cause rather than to any one organization
• Preferred if they can think out-of-box, and are passionate with regards their mission
• Can share personal, real-life experiences
• Has a proven, successful advocacy experience
• Is a team player
• Can put the cause above their personal agenda
• Has experience in working with support groups
• May help if the person is a visionary

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.

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?