World Hepatitis Day (?) - today, May 19th

[mike716]

Today is supposedly "World Hepatitis Day", or so it has been proclaimed by the World Hepatitis Alliance (WHA), a supposedly non-governmental organization that claims to represent all hepatitis C infectees worldwide. I want to take this opportunity to state for the record that the WHA does not represent me nor does it speak for me, not the WHA and not any other authoritarian, totalitarian organization in the U.S. or elsewhere.

As a free agent, I have decided that today is NOT "World Hepatitis Day", I am not celebrating it as such, and I recommend that other infectees do likewise. For me every day is hepatitis day, and I don't believe that the world should get off so easily as paying attention, however scant, to hepatitis one day out of the year.

At the same time, I want to denounce the totalitarian tactics of the WHA and its sponsors the pharmaceutical companies (and probably the government, which supports itself with their money). The WHA pretends to represent all hep C infectees and related persons worldwide, so that there will be only one voice, one opinion, and one politics regarding HCV. This is a lie. There are a multiplicity of voices, opinions, and politics regarding HCV, and they should all be heard and given equal attention. If one group speaks for all, that means the silencing of other voices and of dissent. This is the time-worn strategy of government/industry in its war against the public. The first way to fight it is to speak for ourselves.

Enough said.

Mike

[nygirl7]

OH I think any publicity at all towards ending this disease is a good thing and honestly I don't care who they are as long as they get the cause and information that is CORECT out there to the general public and those walking around with the disease who have no idea or no thought towards it.

But then again, I love the pharmaceutical companies that - although for monetary gain and profit margins - are out there creating things like Telepravir and Bocepravir - who changed monotherapy with interferon to SOC with ribavirin weight based and pegylated interferon.

Until there is a cure for EVERYONE  I just will settle as best I can and keep praying for the day.


But that's just my opinion.

[jusjames]

i disagree with you mike.
today is WHD it cant be every day, its today its design is to increase awareness and bring it in to the minds of people with or with out hep c, if it was every day people would be blase and bored of it very quickly.

[Trinity4]

Would you still feel the same had you been accepted into the Boce trial?

[mikesimon]

You always seem so negative.
Really Mike - life is good.........at least once in a while anyway.

Mike

[Diamando6]

Yes, I agree, it's like 8th March-womens Day!, One day out of 365, dedicated to something so important, ....

[Bill1028]

Does you back hurt from carrying that chip on your shoulder?

[mikesimon]

If every day was dedicated to every serious disease it would be rather absurd.
There are a lot of very important diseases - you know?
Mike

[Trish77]

"Enough said. "

Now there's something we agree on.

[Trish77]

http://www.worldhepatitisalliance.org/en/TheWHA.aspx


The World Hepatitis Alliance

The World Hepatitis Alliance is a non-governmental organisation that represents approximately 280 hepatitis B and C patient groups from around the world. As a coalition of advocacy groups, the World Hepatitis Alliance is a global voice for the 500 million people worldwide living with chronic viral hepatitis B or C.

Then at least people can educate themselves and decide for themselves about the WHA.

http://www.youtube.com/watch?v=9Qb4IHr-lAk

[Marcia2202]

I must disagree with you Mike.

I think it's great that so many people are doing something concrete to create awareness about hepatitis B & C.  This world wide campaign is big and they are besides others also trying to get people to get tested. I am thankful to all these volunteers doing this amazing work!

Way to go... Every 12th person has either hep b, c or both.... Thus the slogan  

Am I number 12?

[mike716]

} Until there is a cure for EVERYONE  I just will settle as best I can and
} keep praying for the day.

Praying and letting people you don't know and haven't voted for represent you isn't going to help, I don't think. Did you elect thw people running WHA to speak for you?

Mike

[mike716]

} if it was every day people would be blase and bored of it very quickly.

Whereas if it's one day a year, they can get all worked up for the day and then forget about it, huh? Like voting every four years and then not participating in any political organizations. How easy it is to get off the hook.

Mike

[mike716]

I didn't expect to get into the trial, Trin. I knew my hgb was too high. And I didn't want to be in it, either, because I'm not yet ready to treat.

Fact is, I was rejected because I'm not sick enough yet for their trial. I probably wouldn't become anemic. So getting rejected was good news. Plus I got a free complete blood analysis and quality PCR. I came out ahead.

M.

[mike716]

Hi, Mike! Yeah, I'm a kinda ornery cuss, I guess, and even more so now that I'm getting old and have this infection. I agree with you about life being good, though. To me it's been great. Which is why I don't much like the idea of making myself sick with these crummy drugs that med+pharmagov are trying to shove down my throat (oun intended), and maybe still being infected afterwards. See what I mean? Sure you do.

Mike

[mike716]

Glad someone around here got it. Thanks!

Mike

[mike716]

Which chip is that, Bill?

[mike716]

Well, Trish, the nice thing about this forum is that I don't have to ask your permission or anyone else's to post. If you don't like what I have to say, you're free to argue all you want, as you've been doing, or even just ignore me. But I don't think your suggestion that I stop posting is in keeping with democratic institutions. Maybe that doesn't matter to you.

Hey, I hear that Medhelp is recruiting people for the censorship department. You might want to apply.

Mike

[mike716]

} Then at least people can educate themselves and decide for themselves about the
} WHA.

Sure, good idea. While you're at it, you can check out their Campaign Partners and Sponsors at:

http://www.worldhepatitisalliance.org/en/TheWHA/Supporters.aspx

so if you think that Roche, Bristol-Myers Squibb, and Novartis are looking out after our best interests, there you go.

And you can check out the WHA's organizational structure at:

http://www.worldhepatitisalliance.org/en/TheWHA/Structure.aspx

where it says that a guy named Chris Taylor, of NASTAD, an AIDS organization, is representing all the North American HCV victims. If you're happy with that, then you can climb right on board the WHA's campaign to preempt HCV organizing and coopt the voice of HCV victims.

It's safe and cozy to just go along with what's out there, isn't it? I mean, thinking and acting for yourself is such a drag...and maybe even dangerous, huh?

Mike

[mike716]

} I think it's great that so many people are doing something concrete to create awareness } about hepatitis B & C.

Who are all these people you're talking about, Marcy? There are only seven people running WHA, and they elected themselves.

The WHA is a scam to prevent HCV infectees from organizing. Do you even know who Chris Taylor, the guy who says he represents you, is?

Mike

[Trish77]

I haven't suggested you stop posting.  The implication is that this post is not useful and it's somewhat self-indulgent.  You might want to consider what impact it has to bring all this negativity here on an ongoing basis to a Hep C support forum.  Your implication is misleading to suggest that WHA is only about making the world Hep C aware on this one day which is why I included the link for others to evaluate for themselves.

[mike716]

} You might want to consider what impact it has to bring all this negativity here on an
} ongoing basis to a Hep C support forum.

I don't know how you can say that, Trish. I'm sure if you count our respective posts, you'll see that you post probably around ten to every one of mine. And you can hardly say I'm always being negative. I've gone to a lot of trouble to collect useful data and information, and I post it whenever I have it. The forum members have been very generous to me, and I believe I have reciprocated.

But there are serious problems with funding and research, and since I'm a victim of the mistaken policies, I have every right to speak out. It's only too bad that more forum members won't do the same.

Mike

[Trish77]

I'm just going to let this go, Mike, other than to say I have not said that you are always negative.  You are putting words in my mouth and misconstruing what I've said.  I'll leave it at that.  I don't want this to turn INTO an argument that serves nobody, including you.

[Trinity4]

I am with you about Chris Taylor.  He works for the HIV group, doesn't have hepatitis and is representing all of us heppers.  They are trying to make HCV a subset of HIV since a third of the those infected with HIV have HCV so they feel the two disease should be together.  So who will control the funding?  That's right, HIV.  

Trin

[Diamando6]

I think that is always good and nice to know that somebody is taking care of our desease, and spreading awerness of importance of it. What I think that Mike thoutht, and me as well is that is much more important to us , if they can provide us with conditions for cure, i.e. to release as soon as possible a medication which is supposed to help many of us.
Sorry for speaking for you, but correct me if I am wrong Mike!