alzheimers news-we want our money back

ALZHEIMERS NEWS-WE WANT OUR MONEY BACK

aduhelm or aducanumab is a monoclonal antibody that is given intravenously monthly
it binds and removes amyloid plaques from the brain
removing these plaques leads to a decrease in cognitive decline
a year of these aduhelm infusions remove detectable amyloid on amyloid pet scans

its thought that amyloid plaque accumulation in the brain is what causes alzheimers disease 
its the first thing that happens is this amyloid accumulation
later tau proteins tangles accumulate
then inflammation occurs
all three kill brain cells

the fda gave approval for its use in early alzheimers 
it also is requiring biogen the drug company that makes it to do a phase 4 study to further define how well it works
this study will take several years

i have now had 14 doses of aduhelm in clinical studies
i am in a post fda approval study that will last at least two years
its called the embark study and consists of folks who were in studies prefda approval
its expected my study embark will get extended after two years

i have received about $50,000 of  the drug aduhelm so far
that doesnt include all the labs all the mris all the amyloid pet scans all the ekgs all the memory tests etc that i have to have done
that probably adds another $50,000+ to the cost
so its easily over $100,000 about what a year in a nursing home would cost

a quick aside here
my mri of the brain for microbleeds was negative so i get my infusion again in one week
whew on that one

i did think what i would do if i had to stop these infusions
that would mean i wouldnt qualify for many of the newer treatments for alzheimers disease that are being studied

i would then be like many of you 
left on my own to just do the healthy things folks do to slow down the disease and aricept (donepezil)

aricept only slows done symptoms but doesnt directly treat the disease

as i have written before there will likely not be another drug i can access in a clinical trial since i would not qualify based on strict criteria for entry if you have been previously treated like i have been with an antiamyloid antibody ie aduhelm

so for right now medicare will not pay for the aduhelm infusions
zero is how much they pay
the price of the drug was dropped in half to around $28,000
there will also be charges for physician fees facility fees labs mris maybe an amyloid pet scan or spinal tap and spinal fluid tests ekg etc

right now if you got the money they will give you aduhelm

in march or april medicare will make a final decision on whether they will pay for aduhelm

this week they announced that they plan to only pay for it if it is in a clinical trial
say what i said

what they smoking up there in washington dc

when you are in a clinical trial like i am or in a university etc you dont pay for any of the care you receive
thats zero nada
so
what the heck are they doing

i guess they mean they will pay the research locale for the aduhelm

thats a big road block to getting the drug

this doesnt really make sense to me

do you know what or get off the pot is what i say 
cover it for those its approved for or dont approve it at all
i dont see this helping much getting the drug to folks 

i agree that more research needs to be done before we really know
it could be years before we know how much this really really works
like with the cholesterol meds like lipitor etc that using it for years decreases the risk for heart disease strokes and probably alzheimers

like with other terminal diseases like cancer etc we in the alzheimers world now dont have time to wait before we know for sure to find out if they really work
we need treatment now
we dont mind taking our chances on experimental drugs

so also this year 
medicare decided it would raise all medicare folks monthly costs by $21.50 to cover the potential cost of aduhelm

say what is what i said
i dont recall this has ever been done before

i could understand an increase because of the cost of covid care
im sure covid costs exceeds what aduhelm would cost
if it was for covid costs i wouldnt mind paying for the increase in medicare

now
since medicare really isnt going to pay for aduhelm
covering it for research only doesnt help much

all i got to say now is
i want my $21.50 back for the extra money i had to pay for medicare this month

i suggest you call your congress person and tell them the same thing

we want our money back

the organicgreen doctor