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

[HCVet]

>>The fact that the WHA member criteria specifically states that Hepatitis has to be the MAIN focus of a member organization is significant in bearing this out, seems to me.

You may not know this, but NASTAD was created by the CDC, a gov agency. That's against the rules too

We tried, on numerous occasions, to contact Chris and NASTAD and find out just what was being represented on our behalf to WHA, and ultimately WHO.

Other advocates have also, including Canada. No response to anyone... Now, we are in communications and hopefully universal precautions will pay a role in WHO's agenda for viral hep and any BBP disease. Hopefully NASTAD will become NASTADVH (((Peter))))with a different approach addressing HCV patients needs.

Real harm reduction:)... There must be a global push for universal precautions, with general awareness, not pick and choose who goes to the STD clinic. And kits for drug abuse.... Needles are not enough for this virus

You may find this link of interest http://hcvets.com/data/transmission_methods/transmission.htm  

[Trish77]

"Glad you took off the glasses now I hope you see our concernes that Chris was placed in this position to position special interest with no more regard for HCV than the man in the moon. "

Well....a little further up, there's a link I posted that seems to contradict that and shows that he's done more something than nothing.

http://www.nastad.org/Docs/highlight/2010519_NASTAD%20World%20Hepatitis%20Day%20PR.pdf

Frankly, I think this is the trend, that HIV/AIDS organizations can't ignore Hep C and are having to bring it under their umbrella due to the numbers of co-infected. Because HIV/AIDS organizations are already well established, they can bring their funding and lobbying power to bear and end up being the voice whether heppers like it or not....and I would say it's a "not" from my limited exposure to this.  The fact that the WHA member criteria specifically states that Hepatitis has to be the MAIN focus of a member organization is significant in bearing this out, seems to me.

[HCVet]

http://hepcop.org/wha/WHA.pdf

sorry, this links works, and it's also good to know I took it wrong:) Guess we're alike that way, lol seems I get a similar response from a few here, anyway.

[Trish77]

Well, the comments weren't meant to be harsh but you're not the first person to take it that way when I've been rather direct and say it as I see it, whether correct or no.  Thanks for the link, however unfortunately it doesn't work as is.

[HCVet]

The photos came from Taylor's FB, already public The petition does not assinate Chris ... he already assainated his character as a represenative of this disease when he posted the pictures.  We want fair representation, espically now with WHO negoations, After repeaded attempts to contact Chris and NASTA were ignored, it became the democratic nature to go public with our concerns. Here is a link to the criteria for representation as a WHA member, seems you'd want to read that first before issuing such harsh comments. Glad you took off the glasses now I hope you see our concernes that Chris was placed in this position to position special interest with no more regard for HCV than the man in the moon.
http://hepcop.org/wha/NASTAD/WHA/pdf

[HCVet]

Hi Trish, HCVets.info has the FDA presentation on treatment.
http://hcvets.info
FDA Federal Register Documents
NOTICES
Docket No. FDA-2010-N-0107, CDER 20103.  Expanded Access to Direct-Acting Antiviral Agents for the Treatment of Chronic Hepatitis C Infection in Patients With Unmet Medical Need; Public Hearing; Request for Comments (Notice of public hearing; request for comments.  Pages  11189-11191 [FR Doc. 2010-5055]  [OFR PUB]

Public Hearing on April 30, 2010 The purpose of this presentation is to demonstrate the critical roll education plays in any treatment success

This is the link to the petition, but it is closed now. There are a lot more sigs that what you see on the page. Folks had an option to display their name. This pretty much explains why everyone is upset with Chris's appoitnmtnt to WHA http://hepcop.org/wha/NASTAD/TaylorPetition.asp