[ExI] right to try bill

[spike]

Cool, I was hoping something like this would happen.  Currently if a patient
has a disease that we know we have nothing to fight, patients don't really
have a good way to just try something, anything, take a shot in the dark,
better than just laying down your arms and dying with ammo still in your
weapon just because we can't see the target, a hail Mary play, anything,
just anything:

 

http://www.medpagetoday.com/PublicHealthPolicy/HealthPolicy/60419?xid=NL_bre
akingnews_2016-09-23
<http://www.medpagetoday.com/PublicHealthPolicy/HealthPolicy/60419?xid=NL_br
eakingnews_2016-09-23&eun=g760153d0r> &eun=g760153d0r

 

OK so we see the downside: possible bad actors pushing some goofy useless
pharmaceutical product for profit.  So I thought of an idea.  We could take
all the hopeless cases, get them to sign up for something, anything.  Then
we get a board of overseers, non-professional, volunteers perhaps, nobody
with any possible route to profit, just observers and advisors.  We open up
some kind of web-based public data site, so that everyone can view the
database.  We include what meds the patient consumed, and perhaps some kind
of database to describe the vital stats, the outcome, etc.

 

The task would be large-scale pattern recognition, the kind that cannot be
readily done by machine by known means, but a million pairs of eyes might be
able to extract a pattern.  We could number the medications, perhaps have
advisors to steer the patient away from off-label pharmas that would make
any known medical condition worse (if the patient had hypertension for
example, that patient's right-to-try package would eschew stimulants.

 

One I have wondered about for a long time: those steroids that professional
sports people are supposed to not take but we know they do.  What if. a
terminal heart patient is given big doses of that?  If the patient is
spinning into the ground anyway and we know what will happen if we stand
around and do nothing, why not give him that?  If he eagerly volunteers and
we don't really know if it will help, why not just try something, anything?
A wild shot in the dark is better than dying with unfired ammo, ja?

 

spike

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