welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, June 4, 2021

alzheimers news-the alzheimers day of reckoning is on monday


monday june 7th may be the day the alzheimers world turns on its axis and pivots a different direction
its the day that biogens aducanumab will be either approved for use in early alzheimers disease
it will be disapproved for use in alzheimers disease

if its disapproved then hope is lost for many of us in the alzheimers world
there are drugs coming behind aducanumab that may work better but its disapproval will make their approval even more difficult
for us affected now this drug is our hope no matter how small its our only hope for some treatment

its even possible that if its disapproved the research world will turn away from removing amyloid as  a way to slow down the disease

i personally think that aducanumab will work although by not as well as those drugs being studied behind it like lillys donanemab or bogens lecanemab which will work better
some say 22% better vs 30+% improvement in symptoms

remember alzheimers disease is a terminal condition like terminal cancer
treating it needs to be like treating terminal cancers
treating either one will cure the disease but it will or might slow it down
we do this all the time with terminal cancers

as a patient and as a family member of family who has had this slowing down is acceptable and might i add appreciated
remember its like dealing with terminal cancer

remember many of our cancers use to be terminal but now are  not considered terminal anymore
eg some leukemias some lymphomas approach a 100% cure rate now

is this where we are right now with alzheimers
is aducanumab this turning point

many research scientists and treating neurologists support the approval
many research scientists and treating neurologists dont support the approval
the fda advisory board voted against supporting its approval
the alzheimers association strongly supports its approval

its biogens fault for putting us in this situation 
they didnt do the research the way it should have been done

what really needs to be done is this
a new 2-3 year study needs to be done using the dose of aducanumab which seemed to have the effect of that 22% improvement in cognitive decline
this should be done before it seeks approval
thats not the way they did it
again its their fault for doing this wrong

there are three possibilities for how the fda  will vote on monday 
full  disapproval
full approval
partial approval 

full disapproval will dash thousands of folks hope for treatment
it will slow down the advancement of other similar treatments
it will set back finding a treatment 

full approval will give us all some hope
that said is it going to be worth $50,000 +- a year for 22% improvement in cognitive decline
in my world we all say yes
there are not enough infusion centers and neurologist and mri sites to handle the surge of people wanting treatment 
the workup to get this drug will probably require an amyvid amyloid scan and maybe a spinal tap
the scan isnt paid for by insurance
so far no insurance will cover it
if approved it wont be available for almost a year
that said there are at least 600 sites ready to start treatment
this could become only available for the haves not the have nots

partial approval will give us good parts of both of these other choices
the biogen folks will have to do a longer study to really document the way they should have done in the first place to see if this stuff really works like they say it does
there will be more limitations on its availability
there would be the possibility that the drug will later be removed from use if it doesnt show the improvement thats significant
this wouldnt be the first drug thats done this way

now for me
for biogen
they have restarted a 2 year study that many of us who were in the original study were in
i eg am being reevaluated to restart my monthly infusions for 2 years of the full dose of aducanumab that seemed to work

this month i will have an amyloid pet scan and a tau pet scan
if approved i will start my monthly infusions for 2 years
hopefully for me this will be all settled after this study is done
there are about 2,000+- of us worldwide who are the lucky ones

however for those thousands of others who arent in this study 
they are being held in limbo
their hopes for the future will be totally dashed on monday 
their hopes for the future will be on an upswing

we in the alzheimers world will take hope anytime

hopefully the new york times interview with me done last week will be published before the fda panel meets on monday
some of what i wrote above was discussed
ive done interviews before for printed news and tv news that was never published or shown on tv
the jest of what i said is above

my view is 
a patient
an alzheimers research patient
a family member with loved ones who died from alzheimers
a physician who has treated alzheimers patients

the alzheimers world is anxiously awaiting mondays decision

the organicgreen doctor

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