ExtraordinaryMeasuresScienceInCinemaAndAFIAccommodating
Introduction/Definition/etc
SPOILING
Experience going to AFI Silver Spring again for
NIH's Science in Cinema series.
Movie partial description, totally biased and uninformed commentary and
approached by a host organization person afterwards..
20100722 12.54 pm Jerry
Body
Extraordinary Measures, the movie with Harrison Ford, Brendon Fraiser,
Keri Russell, and more at AFI.com Silver Spring
by NIH's Office Of Science Education
http://science.education.nih.gov
Based on Geeta Anand's book "The Cure" about the Crowley family's
battle with Pompe Disease, a rare disease where sugars are stored
in the body somehow related to the technical term/ category/ classification
lysosomal storage disorders....
Needed to get out with other things like those mentioned in
Section8VoucherIssues2010 , BFF10 , TheBikeHouse and
GentrificationKills not to mention Autreat2010 stuff...
So bike the new MetBranchTrail from Union Station
area to Silver Spring, MD. Passing Catholic University,
learning the turns, starting to find new little signs
MBR Trail or similar, hoping some of the stores/
shops will have soda machines, but down to my
last few dollars, as would have reserved MetroAccess
to get there, in the heat, etc, but last week went to
see Candy at the same location/ series and just
went up Georgia Avenue when had hoped to
do MetBranch since it opened a while ago,
and I hit the opening but didn't ride the trail,
too tired and hot... So finally biking it,
passing things, trying not to be lost,
had to ask directions from the Florida
Avenue/ Gallaudet green line metrorail
station manager, it's above you and there
is a ramp over there... Anything going
the other way so I don't have to go up and back,
yeah, stairs, and some elevator (indoors?)
lug it up the stairs to the overhead
and start on dark hot pavement,
passed by a young thing on bike,
cute and friendly, just going too fast,
a few others using it, mostly the other
way, find some hills, a few pedestrians
crossing slow, stopping to repack
find the map (never really read it til
after), guessed and hoped to avoid
any urban problems, cops at one
place, near the transfer station
(read DC trash facility) north of CUA,
and a big hill up from there
which might have killed me (get in line,
other things are more likely, but maybe
one of these days...)
I like trying new things, went past
Fort Totten (really a Fort, wish I had
stopped to take photos of the signs)
lots of small broken glass, a city issue,
not the only place, but long wide sidewalk
trails and an interim path, detours around
something they may build later,
passing Brookland, and surviving to
Takoma, taking Blair a very narrow
road to Georgia, when I'll have to try
the scenic back way sometime along
Montgomery In Takoma (yeah, we called it
MIT back in the day)...
Getting there early, you need to get
tickets, allowed 4 and came prepared,
got 4 and met some people I'd seen
before, talking at the cafe, trying to
get paper handouts, to the bathroom
to get rid of helmet head, clean up a little,
a shower would be ideal, but not likely,
the pools at Takoma might be good with
more money, energy and time...
Plus some preplanning (checking hours,
etc)...
Popcorn counter guy offers some cold
water with ice, nice. Generally feeling like
something the cat drug in after 10 miles
in the heat, mostly uphill... Baggy, etc.
Last time they were noisy, a newly profoundly
deaf woman sitting up front, making so much
noise she was asked to leave, couldn't find
glasses, learn that she can't hear how loud she
is, takes some training, adjusting. Nice enough,
but I'm generally avoiding noise, wanting some
peace and quiet to calm and cool down,
like a person coming home from work,
just chilling, instead of having to interact,
catching up, too tired...
Go into the theatre waiting to be last
so as not to have to stand in line,
etc. Front row rarely taken anyway,
I'm in the braille sections usually,
so little to no competition there...
NIH announcer guy in charge and
we are a full house tonight,
I gave up the 3 extra tickets,
back to the theatre, and they
were waiting in line to get extras,
I guess working people can't get
there early, and I didn't check
for anyone I already knew, too tired
and not wanting the conflicts...
Even the rows behind us fill up,
and we get started, intro basically
in the packet, and some trivia,
the real doc is in the movie as an
extra somewhere on the funding
side, no food in my lab fridge sign
is misspelled, etc..
Young yuppie like family with two disabled
kids in power wheel chairs plus one
relatively normal kid (playing with
skateboard stick thingie
and teasing sister, getting even,
ransom etc), dad is a pharma
business VP like guy for Bristol Myers Squibb
one of the big companies,
works hard, doesn't see kids enough,
finds a researcher doing good stuff,
reading research papers,
calls researcher, disconnected when phone
cord is pulled, listening to music,
being isolated in the lab, thinking,
not doing interruptions...
"Asshole", probably, not wanting to
be one, was all the researcher heard,
when reconnecting the handset cord,
and hung up, on docs no reply...
More problems, crisis of faith/
watching his kid(s) dying...
Goes to visit a rural university lab,
tracks him down to the lab,
receptionist asked to wait,
chases him in the car to the bar,
talks with researcher, awkward,
researcher isn't getting enough grants/
funding to do his work,
decides to call himself a Pompe foundation,
half a million, parent comes home, breaks the news
to the wife after skipping out of a meeting,
boss thinks he's losing it, and he is,
his daughter almost dies, and the ER / hospital doc
treating is a dick, thinking it's a blessing she
dies and not suffers, typical...
Issues going into producing the med/
enzyme, FDA clinical trials, funding,
etc...
Other families called in, fundraising,
come up with 90k, as a first installment,
not enough when the doc visits big city,
pharma politics, researching getting
money, bought by another company,
to have enough to take it into production,
4 competing teams, all blind to each other
instead of cooperating, leadership team
created, but original researcher not involved/
invited, and family / dad is the bad guy,
time and time again, to make it happen,
one VP gives him shit, just stay out of the
way, you were only hired to fulfill getting
the researcher, way to involved, not scientific,
analytical detached, then back end him
on calling in families to the pharma
company / biotech, and again
in getting the kids treated, they
were going to just do the infants,
little enzyme created to do a clinical trial
and after the dad risked all in creating it,
from researchers attitude, people kicked
out of the lab, loud music, gruff, etc...
Basically Principal investigators are like
that, as mentioned previously, GET OUT OF
MY LAB! not said only once, but several times
during the movie...
Control freaks, need them to create stuff,
but don't want to be around them much,
just want the results...
Sappy moment, "Uncle Bob" comes in
to hospital, only way he can get access,
and family keeps quiet...
Kids respond to enzyme in a sugar
high, it's working! Hugs, but no kisses,
happy ending. Highly improbably,
but that's why it's a movie and
not our normal disabled life(s)...
End of movie discussion,
researchers, politics, funding,
FDA guy gets up on stage too,
comparisons of reality to the movie,
the ones selected are relatively accurate,
some possibility the rare disease program
is at risk of losing funding?
Pharma and other issue distasteful,
pro pharma, some issues brought up,
design of the trials, some will not be
treated, costs of making medicines
for rare disease, not spread across
large numbers of payors, 50k/ year
in treatment costs, per patient,
maybe $90 million to create a new drug,
patient groups roles in creating these
things, basically researchers view
is we patients are here to fund stuff,
raise the money if you want to stay
alive, so on top of risks, not all are
Harvard Business School and happy
families otherwise, networks of patient
groups, advocacy, some corners cut,
perhaps, don't know the value of sibling
study when it's usually twins study,
but adapting, removing the conflict
of interest, by firing the creating dad
from the pharma company, etc...
Then afterwards an AFI person
comes up to me and starts asking
me questions "What made you think
you could bring it in?"
"Can't have it here"
basically doesn't like my type it seems,
feeling really welcomed, just elite
scientists, docs, and forget the patients,
guess Hollywood East isn't into reality
shows...
It's publicly funded and you don't get
to choose your audience, so will see,
I had three other things to do last night,
and went for the long shot, biking in the
heat and trying something else,
largely unknown, and got snobbish
like response from one of the hosts...
And next one is on behavioral speaker/
discussion answering questions,
movie involves woman who decides to
remove her breasts and ovaries
in order to avoid having highly likely cancer
In The Family, iirc
Conclusion
Summary of experience or similar
Discussion
A place for feedback on the page presented
See Also
NIHOSEandAFIResponse
http://novapeers.pbworks.com/StaringBeauracracyInTheFace2010#Two
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