alzheimers news-a new specialty called alzheimerology needs to be developed

 ALZHEIMERS NEWS-A NEW SPECIALTY CALLED
ALZHEIMEROLOGY NEEDS TO BE DEVELOPED

this week as i lay on the bed at the ucla clinical research infusion center i discussed the drug aduhelm or aduhelm that i am receiving each month as part of a post approval study of the drug with the nurse
i explained to her it was a monoclonal antibody that binds to part of the amyloid protein in the brain and removes it from the brain
the theory is that if you remove most of the amyloid plaques that the disease will be slowed down

preliminary studies implies it does this
heck even the fda approved its use in early alzheimers disease
but
alas
medicare or cms looks like it will only approve paying for it if its used in a research study
thus
financially restricting its use in most folks who could potentially benefit from it

i look at alzheimers disease as a fatal disease like terminal cancer
we as patients are quite willing to take chances if a drug might slow down the disease

aduhelm or aducanumab is like some of  those drugs that are used in terminal cancer patients it slows down the disease some but doesnt cure it

yes aduhelm or aducanumab is expensive but so it cancer chemo drugs and those anti-inflammatory infusions that arthritis patients and gi patients and neurological patients get

there is no limitation like refusal to cover these terminal cancer treatments by medicare in most cases

if you are going to severely limit its use this just take away its approval

with aduhelm or aducanumab we are looking at a potential 20% reduction in memory decline
i expect the results will be better than that when looked at over a longer length of time

the other 3 new drugs soon to be approved probably by the fda are similar to aduhelm but probably will work even better

a solution to this aduhelm accessibility needs to be solved
the problem will not go away
it will be accentuated later this year and next year

we need a war on alzheimers like we have against cancer

there seems to be some age and disease discrimination going on here
heck theyre old and gonna die soon anyway from their terminal disease
lets not waste any money and resources on them

kinda like cancer patients were treated in the past

now 
you can get aduhelm or aducanumab infuions if you want to pay the over $28,000 a year for it

dr keith vossel head of the easton alzheimers research center at ucla wrote in this well written oped in the los angeles times about the problems with the drug its access the lack of the massive infrastructure that doesnt exist to provide the infusions to the larger numbers that would qualify for it

its back to the infrastructure thing

eg
where i live in santa barbara there probably is not the resources available to even start giving aduhelm infusions right now
you need doctors who understand how to use aduhelm and how to diagnose the disease correctly and you need infusions centers that are already full of cancer patients and other patients requiring regular infusions
there is not enough room for all those patients

as dr vossel writes in his oped there are tens of thousands of folks who would qualify for these infusions in the ucla system

We need to create a sprawling infrastructure — an entire medical culture, frankly — to accommodate and help the approximately 6 million Americans with Alzheimer’s. And we had better do it fast, because several promising drugs are wending their way through the approval process

but
there arent enough alzheimers doctors and scanners and infusion beds available to provide those monthly infusions of aduhelm like im getting in the research world

most of the folks with the knowledge right now are doing mostly research

there arent enough of these knowledgeable doctors available to care for the onslaught that would occur

its like the us before the onset of covid
we werent ready for this mass viral infection outbreak

so
we are with alzheimers
we arent ready for what it will take to do all these treatments
this issue will not be going away and it will be more magnified soon

this week i woke up arond 2 am out of an aricept dream
i thought
sometimes waking up like this out of sleep produces my best ideas
that 
we should develop a new specialty of folks who only take care of alzhmeiers patients

the heart has cardiology 
the nervous system has neurology 
the stomach and intestines have gastroenterology 
the cancer world has oncology 

we in the alzheimers world need our own doctor
i suggested
i came up with this word

alzheimerology
the specialist would be called an alzheimerologist

you could take family doctors or internal medicine doctors or neurologists or psychiatrists or gerontologists and have them do a fellowship of 1-2 years in the specialty of alzheimerology

they could be the ones to direct the care and treatment of these alzheimers patients
like
the oncologist do now

yes
i specialize in alzheimerology they could say

we need to do something
the system is about to be overloaded

there are presently 5,800,000 folks with alzheimers in the usa

medicine now is identifying folks with prealzheimers 10-20 years before symptoms occur
those folks are being treated now in research studies
those folks who have even more salvageable brains than i do 
they may need to be also treated before symptoms start with these infusions or other alzheimers chemotherapy 

this even makes the need for the infrastructure system to be set up now to be ready for the onslaught of cases in the next 10 years

but do we have the foresight to be ready for this alzheimers pandemic
or
are we going to be caught unprepared like we were with covid

the medical field and the government has a lot to do in the alzheimers world
so far 
their track record isnt good

i am lucky along with a few thousand folks around the world to already be able to access adhulem or aducanumab infusions for now by being in these post pandemic post aduhelm approval studies

there are millions though that wont ever be able to access these drugs

this last week i got my 15th infusion of aduhelm or aduhelm
my recent mri of the brain shows no microbleeds
if i could see my amyloid pet scan it should show that a lot of the amyloid plaque is gone from my brain
in the next year almost all of it will be removed from my brain
im hoping that will slow down the disease some

i am due to be interviewed by the ucla easton alzhimers research clinic pr folks on monday for some articles and interviews in the future about my participation in the aduhem or aducanumab study 

ill post them as they occur

im lucky i think to be where i am at

i wish this drug was available to more folks
i think most of them will be like i am and accept the risk involved
it is not as bad as those drugs chemo patients have to endure

so 
we need
more availability of aduhelm
more alzheimerologist

the organicgreen doctor