now is when we start changing things

Hi everybody,

My name is Rudi Cilibrasi. I was born with HCV in 1974. Both my
parents died while HCV+ and I am now HCV+ and the liver is getting
weaker. I have actually started the peg inf + ribavirin combo therapy
some years ago, but I got stopped midway (after clearing!!) through
some stupid FDA / IP restriction issue.

Its morally obvious that the right thing in that situation was to make
some sort of single-case exemption at least given the circumstances.
It didn't happen, and because of this I am still HCV+ and looking at a
hard road ahead. It's not just me that loses: all of you lose too,
because I am a popular scientist and open-source author that has been
contributing for years, including to the Linux kernel for example, as
well as the software on http://complearn.org/

It's sad to me that after a lifetime of giving, somehow my government
returns the favor by nickel and diming me out of lifesaving medicines
on what is actually a technicality. Please see my recent comment on
the World Intellectual Property Organization's forums where I detail
the full story:

http://www.wipo.int/roller/comments/ipisforum/Weblog/theme_seven_how_is_intellectual#comments

In the past few years, as I have watched how little has been spent on
HCV research, I have been depressed. But just the last week I have
been receiving some very good signs, and I think now the time is right
for us to make our big run like AIDS did ten years ago. Now is when we
can grab the money everybody and if we do this right, many of us will
live extra-fun lives with regenerated livers. If we keep acting
incompetantly in organizing like we have in the past, we will continue
to slowly die off until there is "no more market" as the pharmies like
to say.

Here is one of the good signs I found:

http://www.thepetitionsite.com/signatures/703119152?page=1

Another good sign has been feedback from many online friends. I was
pleasantly surprised that I am getting a good response rate with my
plain description of my life and how it was affected by HCV and
intellectual property.

I think the most important good sign is that now people are starting to
realize that it is not a "maybe" to take control of our government, it
is a "must". Our lives are being thrown away and will continue to be
thrown away until we start acting competantly in creating the political
capital necessary to overrule this corruption.

So now I am calling on everybody: please, speak plainly and tell your
story. HCV must no longer be stigmatized, and we must hold those who
have ignored our loved ones health needs as they died accountable. I
know there is more than enough heart-touching reality out there, it's
just that it needs to be spoken clearly. And everywhere. This year.

The petition I mentioned above is due the day after my birthday, July
19. Let's make sure we get the 5000 signatures we need, and lets also
start a bigger publicity movement which will continue to apply pressure
to the Gates Foundation as well as the governments involved to increase
HCV funding. I have a server and I am going to help this out however I
can, obviously. But for this to work we need to work together and we
have to come out strong starting now. Our goal must be to get money
allocated in the next 1-2 years for this research to start now, so that
it will reach fruition in time to matter for us.
We need to be loud. But not just on this group. This is preaching to
the choir. We need to get out there now in the real political message
boards, and blogs, and everywhere and try to touch people's hearts.
Nothing else can make them change.

This is what matters now, and we must be the ones to do it.

Let's try like our lives depended on it.

Rudi

.

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