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.

jfkoc

Michael....you are a banner carrier and will always be one!

SusanB-dil

yes - I second that, jfkoc!  We appreciate you, Michael.

Michael Ellenbogen

 Not sure what that means but I hope it is something good.

jfkoc

it is very good!

mommyandme (m&m)

Michael, 

Thanks for this information. Very interesting. Politics interfere with so many good things and hurts many good people.  I’m sorry you feel you wasted your precious time yet I bet your input has impacted many for the better.  Thank you. 

Iris L.

Michael, you helped me very much when I was being bullied on the boards.  One thing you taught me that I'll never forget is to keep going forward!  The people who hurt you are not worth any more of your time.  They don't know what they're missing.  It's their loss!  You still have things to do and people to help.  Also, you have done so much over the years, at some point you need to accept your accolades and let others do the heavy lifting.  Life is short, as we know, and you need some time for yourself and your family.  

Also, thank you for sticking up for the African-Americans.  I'm not involved with DAA but it's good to know their history.

Iris

Michael Ellenbogen

  

Thanks so much to all but all of their negativity on the other forum just makes me stronger. In fact, because of it this site is now being seen by all of the top dementia researchers and so many more to see what some people try to stop real progress. Over 5000.  You were th only one who got it Iris as this was all about discrimination that I tried so hard to fight. There are people who try to set us back and talk and then there are those who real care to bring change. The decision on what side one should be is easy for me to make. The funny thing is its always the same old folks being up the road block to change. Losing one’s filters helps make progress. May be more should do that. 

abc123

Michael, You have taught me a lot! I have a great deal of respect for you. 

Sincerely, 

abc123

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.

 

Joydean

Micheal, I want to join all the others in thanking you. I too have learned a lot and appreciate you sharing your knowledge with us.

Michael Ellenbogen

II cn not believe  all of the views this is getting,  especially compared to the other forum. I am so glad the pushed me over the edge to share this at AAIC. It is actuly helping to bring change  faster then I thought it could happen. I am hearing from so many of there partners who do not have dementia and they are saying the executive director did similar things to them an the heard the same from others. Would have never known this if I did not expose this. Many will no longer short them after their conference in Sept. It was a little late for them to back out but they plan on sending them letters after its over.  Now that is how you bring change.