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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
Hi and back attcha:
Right, IOM does not identify vets as high-risk group nor the jet guns, etc. The Committee was chastised for that omission. CDC recommendations about sex partners? I repeat my comment about not letting perfection obstruct progress. I see a glass half full.
And I already said we agree that dedicated funding would be great, certainly preferred. It just is not now in the cards for several reasons. The economy is only one. Also remember that the bill is "enabling legislation" not an appropriation. Even if it passes both House and Senate it will need to be funded. The dollar amounts in the bill (in the language of the staffers) is an ASK.
Phil Blando is not doing lobbying for NVHR. He writes our press releases and gets them circulated. Your conclusion is inaccurate. And I really don’t understand your reference to “monies spent with all the trips to DC…” That’s where the congressional staffers are. And the large majority of those trips are paid by the advocates or the local organizations that they represent, not by NVHR. And you’ve gotta let go of the leather bound books. I have a copy in my hand. It’s a 200 page hardcover book with a cheap vinyl cover. Call The National Academy Press (800-624-6242) and ask them; ISBN 978-0-309-14628-9. I really do not understand your imagination about monies spent or “over-the-top approaches we've documented. It may not be NVHR funds directly... it is within the NCHHSTP efforts; the vested interest is too great.” What do you mean? Can you share your documentation?
Thank you for your thoughts. I really have nothing more to add. We share concerns but clearly we disagree on methods. The bill is indeed flawed. The approach of CDC is not how we would like them to proceed. But as I said in my previous post, there is progress and I firmly believe that trying to make everything exactly as we would like is counter productive. Let’s play the cards that we have now and continue to advocate to fill in as we go forward. Have you thought about participating in NVHR to prosecute your ideas?
And I enjoy chatting with you too.
Right, IOM does not identify vets as high-risk group nor the jet guns, etc. The Committee was chastised for that omission. CDC recommendations about sex partners? I repeat my comment about not letting perfection obstruct progress. I see a glass half full.
And I already said we agree that dedicated funding would be great, certainly preferred. It just is not now in the cards for several reasons. The economy is only one. Also remember that the bill is "enabling legislation" not an appropriation. Even if it passes both House and Senate it will need to be funded. The dollar amounts in the bill (in the language of the staffers) is an ASK.
Phil Blando is not doing lobbying for NVHR. He writes our press releases and gets them circulated. Your conclusion is inaccurate. And I really don’t understand your reference to “monies spent with all the trips to DC…” That’s where the congressional staffers are. And the large majority of those trips are paid by the advocates or the local organizations that they represent, not by NVHR. And you’ve gotta let go of the leather bound books. I have a copy in my hand. It’s a 200 page hardcover book with a cheap vinyl cover. Call The National Academy Press (800-624-6242) and ask them; ISBN 978-0-309-14628-9. I really do not understand your imagination about monies spent or “over-the-top approaches we've documented. It may not be NVHR funds directly... it is within the NCHHSTP efforts; the vested interest is too great.” What do you mean? Can you share your documentation?
Thank you for your thoughts. I really have nothing more to add. We share concerns but clearly we disagree on methods. The bill is indeed flawed. The approach of CDC is not how we would like them to proceed. But as I said in my previous post, there is progress and I firmly believe that trying to make everything exactly as we would like is counter productive. Let’s play the cards that we have now and continue to advocate to fill in as we go forward. Have you thought about participating in NVHR to prosecute your ideas?
And I enjoy chatting with you too.
Hello again:) On a positive note, the IOM report did address Hepatitis C case definition, recommending lower thresholds and surveillance data to track chronic and acute infections. Bravo!! Another plus, it finally acknowledges more patients are dying... 15,000 verse the 8-10,000 for the past 12 years.
Our concerns with this report are double standards... for instance... it calls for VH models to mimic the Veterans Affairs model, but does not identify military veterans as a high risk group for HCV awareness campaigns Thus, military continues many of the same practices that have infected millions, including the use of jetguns and mulituse vials.
Ironically, the report suggest the CDC tell your former lovers that you have HCV thou... paving the way, and blurring the lines for HCV funding to finance the STD enforcement plans. (IOM report- page 7 http://hcvets.com/SurveillanceAlerts/100210/IOMHepatitisandLiverCancerReport.pdf
The report gives us "little hope" that the IOM is really getting the reality of HCV disease.
I think I could agree with you that between 2001-2008 influencing management of the CDC bureaucracy was beyond our reach. But I don't now... Both NCHHSTP and the CDC foundations have issued statement to rethink their approach to the HCV epidemic. Strongly suggesting change is on the horizon if NCHHSTP is not funded.
Then, combine lack of transparency... Thus our apposition to the bill.
Integration standard elements may work for some diseases but not HCV. We need dedicated funds just like HIV obtained with the Ryan White Care Act. NIH research allocations are a good indication where HCV research is headed... And HCV research needs to be in its family of viruses to benefit from advancements, or the personal and economic impact will be horrendous.
We concluded NVHR hire lobbyist from its press releases showing partnership with Phil Blando- Formerly with US, Pharmaceutical Care Management Association; and,
RC Hammond- former Senator Gordon Smith's spokesperson, now Sr Exe for Organization for International Investment. One former lobbyist with a new company, and the other, a global lobbyist.
It's hard to imagine less monies spent with all the trips to DC over several years looking for congressional support... the IOM leather bound books are not the only over-the-top approaches we've documented. It may not be NVHR funds directly... it is within the NCHHSTP efforts; the vested interest is too great.
Hepatitis C will never have motivating factor with the direction CDC is taking. It seals our fate. Motivating factors do exist. Vets are dying at an alarming rate now. There is no surveillance tracking the relationship, and the new troops are finding us... looking for answers how this happened.
Another thing that benefits HCV efforts verses HIV, is the fact how many have the virus, 7+times the number with HIV. HCV is also across all spectrum of society. To settle for this bill is selling out, epically for the military vets.
The current administration appears concerned with the cozy relationship tween industry and government now. More so than in the past. That's the root of this placement. Everyone, but the majority of HCV patients will benefit.
NVHR's position needs to follow suit with a new approach, hopefully to stand up for all patients verses supporting the mission of an agency whose sole function is to fund its needs at any expense.
Maybe I've given you something to think about, I hope so... Because I truly believe if the community could ever get together, we would be victorious.
Good speaking with you.
Our concerns with this report are double standards... for instance... it calls for VH models to mimic the Veterans Affairs model, but does not identify military veterans as a high risk group for HCV awareness campaigns Thus, military continues many of the same practices that have infected millions, including the use of jetguns and mulituse vials.
Ironically, the report suggest the CDC tell your former lovers that you have HCV thou... paving the way, and blurring the lines for HCV funding to finance the STD enforcement plans. (IOM report- page 7 http://hcvets.com/SurveillanceAlerts/100210/IOMHepatitisandLiverCancerReport.pdf
The report gives us "little hope" that the IOM is really getting the reality of HCV disease.
I think I could agree with you that between 2001-2008 influencing management of the CDC bureaucracy was beyond our reach. But I don't now... Both NCHHSTP and the CDC foundations have issued statement to rethink their approach to the HCV epidemic. Strongly suggesting change is on the horizon if NCHHSTP is not funded.
Then, combine lack of transparency... Thus our apposition to the bill.
Integration standard elements may work for some diseases but not HCV. We need dedicated funds just like HIV obtained with the Ryan White Care Act. NIH research allocations are a good indication where HCV research is headed... And HCV research needs to be in its family of viruses to benefit from advancements, or the personal and economic impact will be horrendous.
We concluded NVHR hire lobbyist from its press releases showing partnership with Phil Blando- Formerly with US, Pharmaceutical Care Management Association; and,
RC Hammond- former Senator Gordon Smith's spokesperson, now Sr Exe for Organization for International Investment. One former lobbyist with a new company, and the other, a global lobbyist.
It's hard to imagine less monies spent with all the trips to DC over several years looking for congressional support... the IOM leather bound books are not the only over-the-top approaches we've documented. It may not be NVHR funds directly... it is within the NCHHSTP efforts; the vested interest is too great.
Hepatitis C will never have motivating factor with the direction CDC is taking. It seals our fate. Motivating factors do exist. Vets are dying at an alarming rate now. There is no surveillance tracking the relationship, and the new troops are finding us... looking for answers how this happened.
Another thing that benefits HCV efforts verses HIV, is the fact how many have the virus, 7+times the number with HIV. HCV is also across all spectrum of society. To settle for this bill is selling out, epically for the military vets.
The current administration appears concerned with the cozy relationship tween industry and government now. More so than in the past. That's the root of this placement. Everyone, but the majority of HCV patients will benefit.
NVHR's position needs to follow suit with a new approach, hopefully to stand up for all patients verses supporting the mission of an agency whose sole function is to fund its needs at any expense.
Maybe I've given you something to think about, I hope so... Because I truly believe if the community could ever get together, we would be victorious.
Good speaking with you.
Nice to meet you and I appreciate your response. Just getting in... we had medical appointments today. It's been a long day, so will respond by tomorrow morn.
Thank you
Thank you
Ok, appointment cancelled. I'm going to ask my husband to "talk" to you here as he understands this stuff. (And, I'll give you High School!).
I’m JP’s husband. She’s patient oriented; I’m closer to the advocacy activities. We agree with much, if not most of your concerns. We were certainly not happy when DVH was rolled into NCHHSTP. But influencing management of the CDC beauracracy is beyond our reach. The CDC is what we have and that is just not going to change. But we do know that integration of viral hepatitis prevention and treatment is not an objective DVH. DVH is using the IOM report as its road map and Dr Koh’s Interagency Work Group as the vehicle to integrate “programs” into all of HHS.
More…
As much as we would like to have a dedicated funding stream for HCV, the House Appropriations committee made it painfully clear that single disease legislation would simply never get introduced; hence the Viral Hepatitis and Liver Cancer Prevention Act. BTW, where did you get the idea that NVHR spends millions on lobbying? NVHR has not spent a nickel on lobbying ( I am the treasurer). NVHR’s lobbying efforts are very simply individuals of member organizations calling and visiting the offices of their congressional legislators. NVHR’s budget doesn’t come anywhere close to being able to hire lobbyists. We often compare our efforts with the success of the HIV/AIDS movement. But that movement was doomed to succeed. When it started, body bags were piling up and no one knew what the disease was or how it was transmitted. Hepatitis has no such motivating factor. We have to play the hand that we have and exploit every opportunity. I used to work for someone who said that we should not let perfection stand in the way of progress. We are making progress even if not every good idea or preferred path can be implemented.
One last thing. Where did the idea that NASTAD or NVHR is or is even interested in taking over WHA? It simply ain’t so. WHA offers us an “advertising” opportunity; an avenue to get more hepatitis messaging in front of more of the public.
I’m JP’s husband. She’s patient oriented; I’m closer to the advocacy activities. We agree with much, if not most of your concerns. We were certainly not happy when DVH was rolled into NCHHSTP. But influencing management of the CDC beauracracy is beyond our reach. The CDC is what we have and that is just not going to change. But we do know that integration of viral hepatitis prevention and treatment is not an objective DVH. DVH is using the IOM report as its road map and Dr Koh’s Interagency Work Group as the vehicle to integrate “programs” into all of HHS.
More…
As much as we would like to have a dedicated funding stream for HCV, the House Appropriations committee made it painfully clear that single disease legislation would simply never get introduced; hence the Viral Hepatitis and Liver Cancer Prevention Act. BTW, where did you get the idea that NVHR spends millions on lobbying? NVHR has not spent a nickel on lobbying ( I am the treasurer). NVHR’s lobbying efforts are very simply individuals of member organizations calling and visiting the offices of their congressional legislators. NVHR’s budget doesn’t come anywhere close to being able to hire lobbyists. We often compare our efforts with the success of the HIV/AIDS movement. But that movement was doomed to succeed. When it started, body bags were piling up and no one knew what the disease was or how it was transmitted. Hepatitis has no such motivating factor. We have to play the hand that we have and exploit every opportunity. I used to work for someone who said that we should not let perfection stand in the way of progress. We are making progress even if not every good idea or preferred path can be implemented.
One last thing. Where did the idea that NASTAD or NVHR is or is even interested in taking over WHA? It simply ain’t so. WHA offers us an “advertising” opportunity; an avenue to get more hepatitis messaging in front of more of the public.
"points have been made well, so no need to continue the back and forth."
Just quoting what was said on another thread. Wonder why it doesn't apply to this one?
Just quoting what was said on another thread. Wonder why it doesn't apply to this one?
Who were they? And who voted? I would like to talk to them. "
I take it when it was put up on this site Survey Monkey, that people all considered it to be a fair move for voting at the time - it is only after the election and the outcome that people are crying foul? That doesn't seem right to me, maybe I am missing something here?
I take it when it was put up on this site Survey Monkey, that people all considered it to be a fair move for voting at the time - it is only after the election and the outcome that people are crying foul? That doesn't seem right to me, maybe I am missing something here?
Thanks Trish. I didn't see the discrepancy either. HCVet, I will answer your post. Just have to run out for a few hours.
Since you can now remember so much better than 2 months ago, and you "listed the nominees, every last one of them" ...
Who were they? And who voted? I would like to talk to them.
Co
Heck, I'm just gonna jump right in here even though this isn't addressed to me. Am I missing something? I really don't see where the problem is.
JP said she gathered names of nominees.
Then listed them on a site.
Then people voted.
And that she has no idea who did the voting.
It's Survey Monkey. While someone would know who was on the list of nominees, they'd have NO way of knowing who did the voting. It's all anonymous as it should be. I've used Survey Monkey to survey members of a chapter of a society that I manage. I can see the responses but not who responded.
So where do you see any discrepancy between the two statements? I don't...
JP said she gathered names of nominees.
Then listed them on a site.
Then people voted.
And that she has no idea who did the voting.
It's Survey Monkey. While someone would know who was on the list of nominees, they'd have NO way of knowing who did the voting. It's all anonymous as it should be. I've used Survey Monkey to survey members of a chapter of a society that I manage. I can see the responses but not who responded.
So where do you see any discrepancy between the two statements? I don't...
" I also don't get how your colleagues and you think what is being done to Chris Taylor looks reasonable and mature. It kinda feels like Jr. High."
---------------------
Since I am one of those "colleagues" I will glady join the conversation.
Now...where were we?
Co
---------------------
Since I am one of those "colleagues" I will glady join the conversation.
Now...where were we?
Co
>>It does mention the underserved populations
Yes, The bill sounds great, but this is the problem...
The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. Decreased CDC funding in recent years, as well as increased demands to support new vaccinations for children, have limited funding of at-risk adults and other integration priorities. Thus, the commitment to service integration required NCHHSTP to assess ways to better support integrated services and seek new funding for integrated programs.” NCHHSTP’s solution was to consume HCV and redesigning services that fit its programs needs… instead of public health needs.
HCV funding from this bill will be allocated by NCHHSTP. We will continue to be a poster child for Hep B vaccines through use of stigmatizing campaigns for HIV confected... but not HBV, which is also not included in drug awareness campaigns; while trying very hard to do the same with STD campaigns. Proof for failure in this logic... after all these years... 60-70% still have no clue they are HCV+ due to the inability of public health to identify patients.
This happens because support for program integration required modifications to the nature and form of NCHHSTP funding agreements to reflect new priorities. Modifications include: ensuring that funding agreements contain standard elements for integration and indicators to monitor program outcomes, with a clear intent to prioritize funding for programs that implement or follow these practices.
Cross-training CDC project officers and program consultants monitor program performance and encouraging project officers to conduct joint site visits; sharing models of promising practices.
NCHHSTP emphasizes committed to completing the task of integrating related HIV, STD, and viral hepatitis prevention activities and achieving a comprehensive approach to health protection and disease prevention. But in reality the undeserved identified in this bill, must meet the CDC/NCHHSTP definition of standard elements. Like I said, you must have a pass to get to the STD clinic and the password is high risk behaviors.
NASTAD/NVHR takeover of WHA is what sparked our outrage to this logic for global practice , now driven by special interest. It will not stop the spread of HCV. It may be Jr. High, I though more like High School, lol, but I hope you understand now we are being bullied and discarded as troublemakers, not "team players":(
As for the Bill, we have raised these objections since the first bill was introduced, 2003, I think. Time has proved us right... but they continue to spend millions lobbying against our efforts to show the failure of public health to deal with HCV... instead of writing legislation that protects this federal funding to serve HCV needs only. We even wrote the section to include.. save them the trouble, just include it and we'd be 100% behind the bill. They don't want to hear it...
Yes, The bill sounds great, but this is the problem...
The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. Decreased CDC funding in recent years, as well as increased demands to support new vaccinations for children, have limited funding of at-risk adults and other integration priorities. Thus, the commitment to service integration required NCHHSTP to assess ways to better support integrated services and seek new funding for integrated programs.” NCHHSTP’s solution was to consume HCV and redesigning services that fit its programs needs… instead of public health needs.
HCV funding from this bill will be allocated by NCHHSTP. We will continue to be a poster child for Hep B vaccines through use of stigmatizing campaigns for HIV confected... but not HBV, which is also not included in drug awareness campaigns; while trying very hard to do the same with STD campaigns. Proof for failure in this logic... after all these years... 60-70% still have no clue they are HCV+ due to the inability of public health to identify patients.
This happens because support for program integration required modifications to the nature and form of NCHHSTP funding agreements to reflect new priorities. Modifications include: ensuring that funding agreements contain standard elements for integration and indicators to monitor program outcomes, with a clear intent to prioritize funding for programs that implement or follow these practices.
Cross-training CDC project officers and program consultants monitor program performance and encouraging project officers to conduct joint site visits; sharing models of promising practices.
NCHHSTP emphasizes committed to completing the task of integrating related HIV, STD, and viral hepatitis prevention activities and achieving a comprehensive approach to health protection and disease prevention. But in reality the undeserved identified in this bill, must meet the CDC/NCHHSTP definition of standard elements. Like I said, you must have a pass to get to the STD clinic and the password is high risk behaviors.
NASTAD/NVHR takeover of WHA is what sparked our outrage to this logic for global practice , now driven by special interest. It will not stop the spread of HCV. It may be Jr. High, I though more like High School, lol, but I hope you understand now we are being bullied and discarded as troublemakers, not "team players":(
As for the Bill, we have raised these objections since the first bill was introduced, 2003, I think. Time has proved us right... but they continue to spend millions lobbying against our efforts to show the failure of public health to deal with HCV... instead of writing legislation that protects this federal funding to serve HCV needs only. We even wrote the section to include.. save them the trouble, just include it and we'd be 100% behind the bill. They don't want to hear it...
With all due respect, I have looked into it. More than I ever wanted to. Issues are often debated by the board and I get to hear my husband's side of the conversation.
I wish everyone would read the Bill. It does mention the underserved populations AS WELL as every other patient. STD clinics are not going to have exclusive control or any control for that matter. Here is part of the Bill under Section 399GG (Elements of the Program):
http://www.govtrack.us/congress/billtext.xpd?bill=h111-3974
1) IN GENERAL- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall support the integration of activities described in paragraph (2) into existing clinical and public health programs at State, local, territorial, and tribal levels (including community health clinics, programs for the prevention and treatment of HIV/AIDS, sexually transmitted diseases, and substance abuse, and programs for individuals in correctional settings).
HCVet, I can tell from the way you communicate that you are very intelligent. I just don't get how you can interpret the Bill as being exclusive. I also don't get how your colleagues and you think what is being done to Chris Taylor looks reasonable and mature. It kinda feels like Jr. High.
I wish everyone would read the Bill. It does mention the underserved populations AS WELL as every other patient. STD clinics are not going to have exclusive control or any control for that matter. Here is part of the Bill under Section 399GG (Elements of the Program):
http://www.govtrack.us/congress/billtext.xpd?bill=h111-3974
1) IN GENERAL- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall support the integration of activities described in paragraph (2) into existing clinical and public health programs at State, local, territorial, and tribal levels (including community health clinics, programs for the prevention and treatment of HIV/AIDS, sexually transmitted diseases, and substance abuse, and programs for individuals in correctional settings).
HCVet, I can tell from the way you communicate that you are very intelligent. I just don't get how you can interpret the Bill as being exclusive. I also don't get how your colleagues and you think what is being done to Chris Taylor looks reasonable and mature. It kinda feels like Jr. High.
>>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
>>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
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
"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.
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.
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.
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.
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.
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
http://hepcop.org/wha/NASTAD/WHA/pdf
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
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
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