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Younger-Onset AD or Other Dementia
Its sad as I wasted so much time with them
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
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?
(DAA). is a 501(c)(3) non-profit organization incorporated in the Commonwealth
of Virginia. https://daanow.org/
Avinity Court, Charlottesville, VA 22902, Karen Love -
Co-Founder and CEO, Jan Bays - Board Chair
From: Michael EllenbogenSent: Saturday, February 12, 2022 10:30 AMSubject: Sending this with regrets
Board Members of DAA, (past
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.
this with regrets,
International Dementia Advocate & Connecter
Ask me how to get involved!
the great reviews.
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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
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.
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
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.
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
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.
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
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.
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.
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.
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?
please keep in mind what happened with Cancer treatment drugs – once the first
was approved, others soon followed as it spurred research and
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.
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.
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.
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.
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.
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.