[ExI] right to try bill

[William Flynn Wallace]

A wild shot in the dark is better than dying with unfired ammo, ja?



spike


I see one little problem:  the list will quickly grow to millions;  it will
take a big website underwritten by Bill Gates or ????  A staff of
volunteers to run it,and so on.


I DO think it's a good idea.  I don't think any medical people will touch
it - lawsuits.  What it would be is a giant form of the People's Pharmacy,
with everyone who wants to posting their symptoms.  You would also get
people referring you to doctors who have solved their cases, folk remedies
(nothing wrong with that for the desperate - I tried on, soap under my
sheets for leg and foot cramps and it WORKS), foreign stem cell treatments
- in short, a big huge holy mess.


Are you volunteering?  Take it to those people who fund nonprofit startups.


There's probably all kinds of this stuff on the web, but it's in bits and
pieces on scores of sites (and no, I don't know any of them).


Me - very introverted, very highly sensitive, very low pain threshold, very
high sedation threshold (meaning it takes far more of a pain reliever to
affect me).  No doctor will prescribe additional meds based on the above
because he will get caught for over-prescribing, which he is actually not
doing; his is just adjusting the meds to the patient.  There must be
millions of people in the same fix.  Eventually medicine will take personal
genetic info and prescribe according to it, but I likely won't see it.


All doctors can do is try to get you into a clinical trial, and that's very
limited and hard to get in.


Go get'em Spike!


bill w

On Fri, Sep 23, 2016 at 9:45 AM, spike <spike66 at att.net> wrote:

>
>
>
>
> 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_
> breakingnews_2016-09-23&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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>
>
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