This post originated from an RSS feed registered with Ruby Buzz
by Rudi Cilibrasi.
Original Post: You, Me, and WIPO
Feed Title: Esoteric Ruby Blog
Feed URL: http://cilibrar.com/~cilibrar/erblog.cgi/index.rss
Feed Description: A weblog made to explore some Ruby ideas in great detail and try to work out ideal solutions to real problems.
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 involves WIPO, the international
treaty on intellectual property rights. And science, medecine, the nature
of politics and capitalism, and many more strange and surprising things are in
the mix.
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 jail 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 near 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 understand that in Canada and the UK, there is government
compensation for the HCV-tainted blood victims. I understand in USA there
is over 100 thousand dollars per case compensation for HIV tainted blood
victims.
here are some funding statistics
How come USA has not yet even acknowledged officially that there
was a problem with infecting thousands of people like me with HCV from
a tainted blood supply? 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
putting your name on the following petition for more funding from anywhere:
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.
Also, I think it's important as open-source and serious Ruby programmers
for us to defend our intellectual turf from takeover from the noncreatives.
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. Let's please have this discussion. And have it in more than
a few online forums because it's really important to many people right now.
And some of these people are people you know. Due to the stigma associated
with HCV, most likely you have not yet heard about them unless it is very
close family or friends.
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 many 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. Usenet,
message boards, relevant email lists, anywhere. 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.
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