today my wife she and i will make the journey down to the james bridges auditorium at ucla for the showing of the documentary turning point about the lilly drug solanezumab story and its failure to reach its end point ie folks would get better ie their memory after taking infusions for several months
it didnt reach its end point so the study was canceled
ala
like the biogen aducanumab study did
unlike aducanumab there has been no plans to reactivate theirs
im sure they lilly are looking closely at their data to see if higher doses are needed
i will be on a panel made up of alzheimers researchers from ucla
i will be the representative of the patients in the studies
i have seen the documentary twice
the first time was before biogens announcement to reactivate their study
the second time was last week
my perspective on the documentary was different after each of the viewings
the first one
i was like
im done i aint doing these no more
it was draining to have gone through nine years of alzheimers clinical trials then just to be dumped suddenly one day
all the work to get to this point and all the hope we had
was dashed
to smithereens it was
i could see it in the faces and hear it in the voices of the patients like me who had placed so much hope for these drugs
i could see it in the faces and hear it in the voices of the researches all who were personally affected by this disease in their families and had spent their lives on this drug some for 15-20 years
i realized they were as dashed emotionally as i was
after the second viewing last week
having just been told i would be considered as one of those who might qualify for the reactivation study next spring with the biogen aducanumab
it was a real roller coaster emotional trip over the last few months
i know like those folks in the documentary that this drug my drug this study represents my last chance to get a drug that might make a difference
for me the train may have left the station if i didnt get this second chance
i was ready to accept that
do my medications and supplements and all the healthy things im doing
dont look back just move on with the rest of my life
i was done with being in these studies
i and others are now getting this second chance hopefully
i am honored
i feel lucky
to have this opportunity
in this documentary is some of the story of the a4 clinical trial
they are using solanezumab infusions monthly long term
in patients who are prealzheimers or have prodromal alzheimers these mean the same thing
ie
they have normal memory tests
but
their amyvid pet scans are positive for amyloid
and or
their lumbar spinal fluid is positive for abnormal levels of tau and amyloid
what this means is that they will be developing alzheimers symptoms one day
they are now given higher doses of the drugs
they will be followed long term to see if solanezumab will slow down or prevent alzheimers
if it does
then folks may one day be identified before symptoms start and receive this drug or one like it
i will be watching this study closely
one question i am anticipating from the audience is what is it like to be in these clinical trials
i will give a one word answer
hope
thats all we can ask
is
hope
the organicgreen doctor
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