Its sad as I wasted so much time with them

Michael Ellenbogen

 Good afternoon,

 

I WOULD FIRST LIKE TO APPOLOGIZE IF FOR SOME RESON YOU ARE GETTING THIS A SECOND TIME. But I was going of multiple email list and you sure cannot trust a person with dementia to do it right. I wanted to ensure that I had reached out to all that I have spoken to in the past about DAA. Please share with all who need to know.  

 

I thought you should know the type of organization you are supporting. I was a founding member of DAA and I am very disappointed on how they treated people with dementia. After sending the attached letter with my opinion on February 12, 2022, I was mistreated again by them. While I still belonged to two sub committees, I was never told I could no longer attend further ones after the letter. In fact, when I tried to get in the meetings, they lied to me for months telling me they were having technical difficulties and that is why I could not get in. They did not even have the respect to tell me that they decided to just kick me out and not be able to longer participate after all I have done for about 10 years for them. While I tried to keep this internal of DAA they made it public by sharing this with folks that were not direct DAA staff.  While my letter states some of the issues with that organizations there were many others reasons for my leaving them. It saddens me to do this but I can not stand by when I see people being mistreated. Especially from an organization who claims to help those with dementia. I made multiple requests to be back on the committees but denied. Is this the kind of organization you want to partner or associated with?

 

Dementia Action Alliance (DAA). is a 501(c)(3) non-profit organization incorporated in the Commonwealth of Virginia. https://daanow.org/

2305 Avinity Court, Charlottesville, VA 22902, Karen Love - Co-Founder and CEO, Jan Bays - Board Chair

 

Michael Ellenbogen

 

 

From: Michael Ellenbogen
Sent: Saturday, February 12, 2022 10:30 AM

Subject: Sending this with regrets

Importance: High

Dear Board Members of DAA, (past and present)

 

I cannot begin to tell you how upset I was by the response from DAA to CMS. It also breaks my heart to send this to many of you. But you know me that I don’t care about myself when it comes to this disease.   I only want what is best for all who are impacted, not just a few.

 

Sending this with regrets,

 

Michael Ellenbogen

 

Michael Ellenbogen - International Dementia Advocate & Connecter

Dementia Advisor

 

 

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The following letter is intended for the Dementia Action Alliance (DAA), Board of Directors, Advisory Board, and Non-board members. This is my response to your DAA Community Members letter sent out on Monday, February 7, 2022 9:36 AM on the topic of “CMS announced it would cover FDA-approved monoclonal antibody drugs”.

 

For those who don’t know me I was a founding member of DAA back in September 2013. While I cannot do the math, I have been seeing 25 years but I am unsure how you folks can say that. I believe I originally came to Advancing Person-Centered Living (CCAL) February of 2013. At that time Dementia was not the primary mission but in the next few months the course had changed to become the main focus for the organization.

 

I finally resigned from the organization on November 15, 2016 because of many issues that I saw developing and I could not stand by and support it as the executive director was part of the problem and believed in silencing others who did not share the same viewpoints. While I stayed much longer than I thought because I don’t like to give up, I finally had to leave when I saw the mistreatment of African American people being accepted to the Advisory Board. My hopes were to have all types of folks being representing those with dementia. That was the final straw for me as I could not stand by and watch that as my concerns were not being addressed related to that matter. At one point after the resignation the executive director actually made the statement to me that she did not like me because I always seem to know everything.

 

Let’s just say, even if the person was right and part of my issues were related to my dementia- Is that a way to treat people with dementia that the organization claims they want to help. In realty I don’t know everything but I do a lot of research on whichever topic I need to work on so I can make the proper decision. That is what I have done all my life and that is why I was successful in my job. I out smarted the smartest folks by doing my homework. Knowledge can be very powerful when you understand all sides, which leads me to the reason I am addressing you all.

 

I will say I did read this letter dated Feb. 1. 2022 written by Susan Wehry, MD for DAA.   https://daanow.org/wp-content/uploads/2022/02/Discussion-Points-About-CMS-Draft-Decision-on-Monoclonal-Antibodies-1.pdf?mc_cid=ce43c735e1&mc_eid=8bee8a3dfb

I also know from others on how you came up to the conclusion which was also very frustrating. In my opinion you have not only placed many people with dementia in jeopardy, it will also have a future impact to all of Pharma. Your decisions should be based on science, education and what is best for all of those living with dementia. In fact with this case it actually bleeds into other sectors of medications.

 

Your decision was based on politics, lack of knowledge, bias and your own personal benefit. None of these should have played a role in this decision. We should not live in a bubble and realize not all folks with dementia are like those at DAA. That is a small number in comparison to the actual size of those affected by this disease. We need to look out for all people with dementia and not just a select few. How can you take the hope away from those who need it the most and may have benefited from this drug?  While the report had some good information, it failed to understand these issues.

 

Most important this was based on a rule not used often by CMS. It was CED which was also used for the Amyloid pet Scan, not just the new drug.

 

They said it was not about the cost. But even though this drug is expensive, there are many other drugs that cost a lot more today that CMS offers for other illnesses, some that cost well over $150,000.

 

If FDA and CMS are in some kind of disagreement, what is important to know is who is responsible for what. FDA is responsible for the approval of drugs and not CMS. If this was to actually work this way no other pharma would pay for more trials as it already cost so much and this would now create a phase 4. Just imagine what that would all cost. And the worst part this will have an even bigger impact to those minorities who need it the most.

 

When cancer first hit the radar, like dementia is today, they made decisions to allow drugs to market sooner with less data. Why are they now not giving the same benefit to a Dementia drug?

And please keep in mind what happened with Cancer treatment drugs – once the first was approved, others soon followed as it spurred research and investment.

 

As far as the serious adverse effects, there are many drugs that CMS offers which are by far more deadly than this drug. They are really, really bad, with black box warnings. But they were approved and left to the patient to decide if the risk was worth it. For this drug, the patient could get 1.3 years of extended life as per the data for Aducanumab.

 

CMS is proposing to only approve the drug for further clinical trial for those who want the drug. Just think about the implications of this. You could very well have to pay for the drug, but in actuality you get a placebo. How crazy is that? They also don’t pay for all the other tests needed for the clinical trial so that would fall on the patient. Then of course, you really limit who has access to it, as the facilities that conduct the clinical trials are limited. They also can only take a limited number of folks at each facility. Again, you are hurting those who need it the most, the minorities. Often the trial facilities are far removed from the underserved communities that need them the most.

 

Some of your people claimed their doctor would not offer them this drug. Was that because these people are in our stage with dementia? It is only for those in the earliest stages. We will probably not have the opportunity to have a drug to save us. That does not mean we should be selfish and not think about those we can save. They need to buy time till there is a cure. No one should have to go down the road we have gone. That should be our goal.

 

Let’s not forget about cholinesterase inhibitors, they only work for 50 percent of the people and many have some serious side effects which I did for over a year. It was more important to me to keep my mind going and live with the side effects. That is a choice I made and one that we all should have the opportunity to make. We need to continue to encourage the growth of drugs with the hopes that one day one will work for us.  

 

This statement your folks made will hurt DAA in many ways. Somehow your folks got misguided and sorry to say. But as you know I am still in background and hope I can still guide you in some way and I have always offered my resources to all of you. I have access to what you folks do not have and that is what makes me know the real issues. Trust me as I would be in the same boat if I did not have access to the great connections that I have. You have become very powerful out there and with that comes great responsibility. You need to be very careful in what you say and do. I would plead that you keep the big picture in mind – and strive to be a voice for all people with dementia.

dayn2nite2

Please don’t air this dirty laundry.  It’s inappropriate and doesn’t belong here.  You are also publicly exposing personal email addresses of others.  Please delete the posts you made today.  Bad choice.

Michael Ellenbogen

This is helpful to those who deal with organizations like that. They must know and be made aware of what others are treaded like.

Jo C.

Against policy and all of the identical Threads on the various Forums have been reported

Michael Ellenbogen

The emails are not complete. So what else is wrong that needs to be fixed.

Michael Ellenbogen

 It would be really nice if you folks would not attack me but just guide me to what I need to do to make it right. I know I need help in that arena.

Jo C.

Michael, you can find links to the policies at the bottom of the page.

In the meantime, it would be a good start perhaps to make some adjustments to these Threads on all the Forums you have placed them on or even better, to delete the Threads, then think about it for a few days and perhaps if you wish to make a statement, to address things in a more appropriate manner.   As it is, this is not doing anything positive.

I am sorry you have been hurt and feel helpless to do anything about it; the feeling of  loss of power, control, as well as respect can be awfully hurtful feelings.

It appears that you may have a personal issue with this group and are very upset and angry; especially at feeling you have been not been welcomed to the group in the same context you were before.   I can well understand all of such feelings, but the approach to come here and lash out publicly or even to possibly punish the group in the the way you have addressed matters has been done in an inappropriate manner and as said, is not in keeping with Board policy as well as not being in the spirit of the Board as a place to be supportive.  I feel sure you did not intend that.

It is inappropriate to provide each person's personal full name and also provide their personal email addresses.  I suggest deleting that infomation asap.

I  would also suggest that you remove your book outreach with the hyperlink as to where to purchase it; that is against policy to Post such matters on the Forums and is considered advertising or marketing.

Your lengthy Thread appears to pretty be much venting of personal anger; some of this is pretty florid.  Perhaps Michael, it would best serve you to delete all of these identical Threads, then think about it for a couple of days before deciding whether or not to Post something again.   There are other places for venting personal anger, and there could possibly even be legal consequences which I once again feel sure you did not intend that.

You must do what you think is right; but remember that the filters are no longer working as they used to, so go slow and think it through, you have time to do so.  However, as said,  please delete the names and personal email addresses of the individuals that you have Posted asap.

So hope you will feel better soon and that all will even out, as the old saying goes; the best revenge is to live well.  I send positive wishes for you to find heartfelt  peace and calm; take good care.

J.

Michael Ellenbogen

 Done, This is not about me feeling hurt. I don’t want someone else to getting hurt.

jfkoc

1.     No names were posted that are not public information on the DAA site or can be seen otherwise online.

2.     Please be specific about what policy was violated.

3.     Finally regarding links to books, blogs etc...members have done this in the past...one is doing so currently. Have you reported her?

Jo C.

Yes Judith all such information is reported IF seen, and also, some of the regular Members also report.  Some such marketing or hyperlinks for purchase may go unseen as not every single Thread or Post is possible to be read.

Please feel free to look at the Policies which are terms and conditions we agree to when we join the Board; "Terms and Conditions" are in a link at the bottom of the page. Try reading them, it is helpful and interesting.  Also, read the "Guidelines For Participants" which is easy to understand: 

https://www.alzconnected.org/uploadedFiles/Content/Contact/ALZConnected%20Guidelines%20for%20Participants.pdf

You can also see some of the specific listings also as reportable if you press the Report button at the bottom of each Post.

Practice historically has been not to Post names and specific contact numbers or links of individuals; being that it has been reported, when the Assn. person has a chance to look at it, they will make the determination.  In the past, such name listings with contacts have not been approved and have been deleted.  Going by history for what has been routinely done.  If it has changed, then we will find out. Safety is of primary concern with the Board and being that opportunistic people lurk looking for opportunity, that is taken seriously by Admin. who work hard to maintain the Board as a safe and supportive place.

Since this is a discussion with Michael, and the Admin. folks have been referred to this to ask direction or advice, it is moving along as it is supposed to.

J.

dayn2nite2

And please note that when this was originally posted this morning, entire names and entire email addresses were posted for all to see and screen-grab, and many of these looked to be personal email addresses, not business emails.

Jo C.

Yes; I saw that; concern making a response necessary.

J.

Michael Ellenbogen

 I just may take this to AAIC and show them how the AA moderators like to squash real import information in the dementia arena.

dayn2nite2

No moderator has done anything, I have no idea what you’re fussing about.  You posting all that says a lot more about you than it does them.  You are always posting your private business on these forums.  Just stop.

jfkoc

I found most of the information valuable as did members on the Caregivers forum.

jfkoc

‘Against Policy.” I reviewed before I posted and have done so again. I could not find that policy. Could you please point it out or copy/paste.  “Practice historically”? How is anyone supposed to know that. Maybe the terms, conditions etc need to be reviewed. 

Michael’s post has received warm responses on the other forum. I find it sad that on this forum he, a person with dementia,  has been taken to task. I did not think we did that here. .

Michael Ellenbogen

 This post is now being seen by the great folks and scientist at AAIC which I have the highest respect for. So many of them are connected to me by LinkedIn. I can wait to hear the great news they will share this year. I am sure it is better then this here.

Michael Ellenbogen

#AAIC22 #ENDALZ #alzhealthdisparities

Michael Ellenbogen

 Thanks you to the AA admin folks for catching an issue with the hyperlinks and deleting them. I was not even aware of that. Thanks for not deleting the post and respecting my thoughts that hopefully will lead to helping others.