Aa
World Hepatitis Day (?) - today, May 19th
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
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
>>pulling with the nasty letter writing etc.,
Jenny, that is what they call anything we ask for clarification on. Oh, us crazies, just ignor us.. We're too whatever... bla bla bla.
But the one thing we are, is well versed on the intentions of NCHHSTP and where it is taking HCV disease. NVHR is just a tool to secure the funding.
I have wondered, where did all that money come from to afford leather bound copies of the IOM report given to capitol hill and it's members... wow, if that isn't over the top when there is such need out here, then I truly don't know what is;(
Jenny, that is what they call anything we ask for clarification on. Oh, us crazies, just ignor us.. We're too whatever... bla bla bla.
But the one thing we are, is well versed on the intentions of NCHHSTP and where it is taking HCV disease. NVHR is just a tool to secure the funding.
I have wondered, where did all that money come from to afford leather bound copies of the IOM report given to capitol hill and it's members... wow, if that isn't over the top when there is such need out here, then I truly don't know what is;(
No, not HepCOP, that's a new organization, about 1 year old. But there are members of HepCOP and HCVets.com, that have these personal experiences mentioned previously. I'd like to all say I do not speak for HepCOP, that is done collective through statements like the petition.
I do hope you look into what I have said further because the answer really is yes to those questions. I couldn't, no one could make this stuff up. It's what happens when you have a for profit public health system entrenched in special interest:( Ask Loran, I doubt Martha gets it, who will be tested (high risk) and where these services will be offered.
Also note the word "high risk" in the bill. It is not there to help identify groups or else the vets would be listed, but there to legally bind HCV funding to STD rules for engagement. Then listen to the promise how this is a start and we'll get it right once our foot is in the door. But it won't unless the RWCA law is changed, we won't have much luck with that...
I do hope you look into what I have said further because the answer really is yes to those questions. I couldn't, no one could make this stuff up. It's what happens when you have a for profit public health system entrenched in special interest:( Ask Loran, I doubt Martha gets it, who will be tested (high risk) and where these services will be offered.
Also note the word "high risk" in the bill. It is not there to help identify groups or else the vets would be listed, but there to legally bind HCV funding to STD rules for engagement. Then listen to the promise how this is a start and we'll get it right once our foot is in the door. But it won't unless the RWCA law is changed, we won't have much luck with that...
Sorry, clicked post before I meant to. Where are you getting these ideas? Honestly, I am not being a pot stirrer. I truly do not understand where these ideas are coming from. My husband is on the steering committee and executive board of NVHR. His mouth falls open when he reads this. It just isn't happening.
Also HCVET, when Chris was elected there were no such "rules" about who could or could not apply. As Trish states, with the antics some of your constituents are pulling with the nasty letter writing etc., they would not garner near the support you would need to do what you say you want to do. Our legislators do not have time or interest in the drama.
I don't pretend to know very much about what is going on now with WHA, etc. But I do know what I was told when Charles Gore asked me to help with that first election. There were close to twenty names submitted from the US and Canada. If we missed your organization (HepCop) that is because we didn't know it existed and neither did anyone else who received the letter asking for nominations as well as giving them permission to share the letter with other organizations. . We did the best we could do with the info we had at the time.
I'm stepping out of this now as I have nothing more to say.
Also HCVET, when Chris was elected there were no such "rules" about who could or could not apply. As Trish states, with the antics some of your constituents are pulling with the nasty letter writing etc., they would not garner near the support you would need to do what you say you want to do. Our legislators do not have time or interest in the drama.
I don't pretend to know very much about what is going on now with WHA, etc. But I do know what I was told when Charles Gore asked me to help with that first election. There were close to twenty names submitted from the US and Canada. If we missed your organization (HepCop) that is because we didn't know it existed and neither did anyone else who received the letter asking for nominations as well as giving them permission to share the letter with other organizations. . We did the best we could do with the info we had at the time.
I'm stepping out of this now as I have nothing more to say.
Ask NVHR, will HCV services, listed in this bill, be restricted to STD clinics if this bill passes.
No
Ask NASTAD, must one qualify to attend the STD clinic in order to benefit from this legislation.
No
No
Ask NASTAD, must one qualify to attend the STD clinic in order to benefit from this legislation.
No
>>If there was a stronger Hepatitis candidate, seems they would have been the ones to win in a landslide but depends on how the voting was done, I suppose.
Not everyone was informed the elections were taking place. The voting process is a bone of contention. Stories are changing now, but there's a record how it went down.
We have very strong candidate that would represent HCV/VH much better than these efforts underway to control the cash and message with very little benefit to HCV patients. But we are not welcomed in the inclusive, small group... same folks, different year... be assured, we all know each other well... or you would think... They are selling us out and we are not going to sit by the wayside and just let it happen. Too many lives depend on our success. We did try to join and conform only to find our names were used without consent, at will... to federal requests that were not supported. That's all they wanted... no input required or acknowledged... Members are censored on mail lists and kicked off when they object.
Ask NVHR, will HCV services, listed in this bill, be restricted to STD clinics if this bill passes.
Ask NASTAD, must one qualify to attend the STD clinic in order to benefit from this legislation.
The answer is yes to both questions which may not matter to some, but for many it means not knowing you have this virus until it knocks you down. It's critical patients know they have it. And then there're the vets, desperately needing help right now, the oldest group, that donated blood to help their buddies. No one knew what was lurking beneath the surface back then but we do now and we need to find them.
Free testing if you qualify,,,, should be NASTAD/NVHR's moto.
Not everyone was informed the elections were taking place. The voting process is a bone of contention. Stories are changing now, but there's a record how it went down.
We have very strong candidate that would represent HCV/VH much better than these efforts underway to control the cash and message with very little benefit to HCV patients. But we are not welcomed in the inclusive, small group... same folks, different year... be assured, we all know each other well... or you would think... They are selling us out and we are not going to sit by the wayside and just let it happen. Too many lives depend on our success. We did try to join and conform only to find our names were used without consent, at will... to federal requests that were not supported. That's all they wanted... no input required or acknowledged... Members are censored on mail lists and kicked off when they object.
Ask NVHR, will HCV services, listed in this bill, be restricted to STD clinics if this bill passes.
Ask NASTAD, must one qualify to attend the STD clinic in order to benefit from this legislation.
The answer is yes to both questions which may not matter to some, but for many it means not knowing you have this virus until it knocks you down. It's critical patients know they have it. And then there're the vets, desperately needing help right now, the oldest group, that donated blood to help their buddies. No one knew what was lurking beneath the surface back then but we do now and we need to find them.
Free testing if you qualify,,,, should be NASTAD/NVHR's moto.
Well it's all a little overwhelming and sketchy. I'll see what I come up with in regards to Canada and just keep reading and absorbing. Thanks for your time in answering my questions and taking my "directness". I do appreciate it.
Trish
Trish
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
