Your critical points are well-taken Gordo.  You're right the end-goal is
not 100% clear.  But have you had a look at the "politicians" section?
There I think I fairly well spell out some serious problems.  Not the
least of which is that the financial incentives are upside-down right now
in treating this disease.  That is, the next batch of drugs will probably
be much cheaper than the current ones; thus, there is big money lobbying
for less research towards these new drugs.  My initial goals are simple:
raising awareness and getting more people tested.  Because I feel like the
current situation, with 95% of HCV+ people not knowing they have it, is a
lot of wasted potential.  It's a test that's getting cheaper each year and
people should be getting it in droves.  If they just knew there would be
more support for all of us.  Not to mention many would stop drinking
alcohol for their own good.  I think also a major goal of mine is to
adjust IP law to take our needs into consideration, as has already been
done with Windows and HIV medicines in some countries and some cases.
There is legislation right now, like HR 417, that offers alternative
models that would still fund research but would eliminate the need to
restrict access to medications to the very wealthy.  This is in the
politicians section and is one viable direction to go right now.  In a
similar vein, I don't understand how come the epidemic rages on in America
yet I keep getting these copyright restrictions for the basic source
information.  It's outrageous.  We spend tax dollars to fund much of this
research, it should be publicly available data, but you can see that most
of it is locked up by publishers that literally provide less and less
service each year.  As I scientist I have witnessed the gradual transition
from the old way of journal publishing where they actually typeset your
article for you and proofread it to the new way, where now we use LaTeX
and other tools to essentially do all the job for the publishers.
Similarly, the journals send out articles for review to people like me who
are obliged to do it for free.  It's crazy that they then get to
appropriate the results of our good works.  The obvious solution is
simple: taxpayer funded research must be free.  This is the Open Science
initiative and is supported by the UN.  Another obvious improvement in my
mind is substantially more research funding for HCV. Towards new more
non-toxic meds like those I mentioned on my website.  The budget for this
is terribly low and it seems to be due to the upside-down profit
incentive.  But with increasing awareness (and by lowering that 95% don't
know it number through testing) we can definately push for equal funding
one year for HCV as HIV as the death rates are similar.  Just one year of
equitable treatment would, in my best estimation, result in a cure.  I
think this is likely because of the recent cloning advancement and for the
reasons shown on my website.

I feel like we have been manipulated into feeling ashamed and being
therefore rather quiet about our status as HCV+.  I think those
risk-factor quizes really put you into a defensive, stigmatized frame of
mind.  And I think the general level of high fear in America right now is
really working against us.

To me the solution is essentially de-stigmatization.  I am distigmatizing
it.  By having those tee-shirts for order.  Soon we will have better
designs from real artists, but already these ugly ones are selling.  I
have been contacting a lot of the old people from the HIV movement 15
years ago for advice and support and a lot of medical big names.  I've
heard back from Noam Chomsky more than once.  And there's one hit already
in Google News on this issue, and I have a committment from a Reuters
reporter to do another article soon.

I apologize for not having a more exact plan of how the money will be
used.  If I get 5-10 grand money I have somebody I can hire in San
Francisco to really take this seriously as a fulltime job.  If not this
effort will still continue but on a slower part-time basis.  I feel rushed
and money can accelerate this thing but even with no additional money at
all there is no chance the effort will not continue because already I can
afford to keep my server up for years on my own savings.  And I am happy
to file FOIA requests and keep promoting the site in very many different
ways until I find the strategies that work.  I've already determined from
my Google adwords campaign statistics that the celebrities (like Pam
Anderson) are highly effective at bringing people to the site.  Once the
papers are fully taken care of for 501c(3) status I can start using her
name again as well as a few other celebs.  And I have heard from one guy,
named Mel who was sadly in the hospital when he emailed me, that he got
commitments from some rockstars to do an HCV rock and roll hall of fame
concert.  Unfortunately he never told me the names and I don't even know
if Mel is still alive because I never heard back from him after the first
email.

But I keep bringing this subject up and it's actually quite common that
when I make the first move others wind up responding saying "my grandma
had HCV" or "my friend died of HCV" ... it's just not talked about enough
yet.  This is what I am trying to change right now by any means necessary.
I'm still testing to figure out how to best do this effectively.

I don't really need your money Gordo I think I would much rather have your
critical thinking skills on my side or your writing skills.  Anything you
can do to contribute would be much appreciated as your comments have stood
out here to me as very thoughtful.  Thanks for your attention,

Rudi

You mean fart in someone's face before you come in, now don't you?

ok sorry to be responding in such a hard assed way.  I won't make any
apologies for the behaviour because it was so out of line and I couldn't
justify any of it.  I appreciate your picking up the personalization of the
Dutch language for our friend, CB.  I know that in the past that use of
localized English language vocabulary and usage has caused mistaken
assumptions in others, (like what is a jumper or a bonnet, for instance) and
of course our there various european friends, as well who sometimes request
translation or openly wonder if the language difference is making them miss
stuff in dialogue.

oh,  doesn't have to be an orchestra, either.

cheers

cactus jammies
////////////////////////////////////////////////////////////////////

elmoemerson@webtv.net      <8507-42E251BA-267@storefull-3253.bay.webtv.net> :

the tendency on tx in belgium is that the virus hasn't to be killed at all costs.
( i don't know about the rest of europe, each country here has it's own laws and own regimen of
social security system)
if one however would have great liver damage and tx is the only option i am sure they would give
someone the procrit or neupogen they need to be able to continue and get the so wanted SVR. it just
isn't common here.
my hepatologist even refuses to put me on tx as i have no liver problems and tx could cause more
damage to the system than benefits. (despite of getting rid of the virus. i don't want a f.cked up
thyroid for example; or the auto immune diseases my ex has since having been on tx) he is very
honest about stuff like that, which i find very important.

we don't need free drug programs here, the social security system is for everyone's benefit, rich or
poor.
i heard many other stories about people living in the us of a who needed medication or go to see a
doctor or dentist.

which is very logical. see why i am not treated, even though i do have fluctuating alt and ast
levels. in some cases the cure is worse than the disease, especially if you don't have any liver
damage an amount of years after infection. (20 / 25 years ago in my case)

you have to live there, that's your opinion.

thank you , hope you farted well through the morning ;)

regards

PS don't think i will become a regular here again because i have been posting for two days in a row.
my son left to sweden for the holidays and i felt a bit lonely in this big house, despite my bf
being here. it is hard to cut the umbrical cord, sigh.

--  
mhm 35x6
smeeter 37(?)
wsd40

we are all in the gutter but some of us are looking at the stars
wilde