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by Rudi Cilibrasi.
Original Post: Untitled
Feed Title: Esoteric Ruby Blog
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Ramifications of the World Intellectual Property Organization treaty
I'm not sure how many have noticed, but this year is very exciting not
just for Ruby. And not just for rails. Things are taking off in all
sorts of directions now that blogging seems to have tipped off a sort
of digital renaissance of writing, interaction, and understanding across
all types of boundaries. Now I am going to try something a bit new, and
suggest that some of the cohesion we have developed over the years in the
Ruby community may be put to good use.
It happens that politics are not always aligned with science, and sometimes
the discrepancy can be severe. This fact is nowhere more obvious to me than
my own personal experience trying to cure a potentially fatal degenerative
liver condition that I have suffered my entire life. It is called
hepatitis C, and it kills many more people in USA and Japan than AIDS does.
For several reasons, research regarding this disease has been drastically
underfunded, to the tune of about 100 times less money per death than HIV.
Unfortunately, due to the nature of hepatitis C (HCV), it often goes
undiagnosed for decades before causing serious liver problems, loss of
ability to work, and death. Another problem is the lack of political capital
in the affected groups, primarily prisoners and injection drug users in
the United States. As these groups have essentially zero political power
at this moment in time, they have been given essentially zero funding over
the course of the last 15 years as this disease has come out into the public
eye. In practical terms, this matters to me because I received HCV from a
tainted blood transfusion at birth and my liver has been slowly degrading
all my life. I can tell that in not many more years I will be unable to work
without medical advances. Which is why I am asking any of you now who might
be touched by this story to look a little further and consider adding to the
discussion I have already started on the following petition for more funding
http://www.thepetitionsite.com/signatures/703119152?page=1
Don't get too hung up on the bad spelling etc on the petition. I didn't
make it. I think we need many concurrent efforts to really drive this home.
The reason I post this to the Ruby blog is because I understand that Japan
also shares with USA a unique problem with HCV, and indeed Japan has been
a leading HCV research center worldwide. Some communities in Japan have
HCV rates in excess of 20%. I expect that there are more than a few people
across the ocean in the Ruby community that have been touched in some way
by HCV, that may have something to say about this, and may even be moved by
my story. If this could be you please consider adding to the commentary at
http://www.wipo.int/roller/comments/ipisforum/Weblog/theme_seven_how_is_intellectual
where I sketch out a personalized (real-life) story of how intellectual
property law affected my life, and what I think needs to be done to fix it.
Finally, for the value proposition, I submit my work in progress at
http://complearn.org/
which is a handy C library for data mining that also has a Ruby binding.
So even in purely economic terms, perhaps it makes sense to fund HCV research
a bit more.
If you think this issue deserves more attention, or you just want me to
continue to be a productive member of the Ruby community for years to come,
then please consider signing the petition above, adding to comments at the
WIPO forum, or reposting this or similar information anywhere you can think
of to improve visibility to get this desperately needed funding. I cannot
tell you how much I would appreciate it if you guys manage to get some
real money allocated on this issue from any source. But I will be able to
show you, over time.
To a better tomorrow,
Rudi
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