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

[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!

[Diamando6]

He,he, this sounds like a family  quarell here! No pan's please!

[Diamando6]

I also have to admit that Mike always provoke large duscussions! Mike, dont feel like a black sheep of the family, there are many like you!

[Trish77]

I love you, Mikey...I just find the seemingly eeyore approach hard to take sometimes.  Partly due to my own idiosyncrasies as well, most likely.

[HCVet]

HIV have writes>>They are trying to make HCV a subset of HIV since a third of the those infected with HIV have..

Hi Trinity, that's 300,000 HIV patients and 177,000 are gay. I think if we must partner with another disease it should be diabetes. HIV has done nothing in the last 8 years to help mono or "other disease" confected HCV patients. 1/3 sounds like a lot until you realize just how few with HCV have HIV.

[Marcia2202]

My friend, the people I'm talking about are the many volunteers who take time out of their schedules to create awareness.

As I have understood it, WHA is a body that is helping to coordinate many Hepatitis groups all over the world. There are a lot of volunteers working in the different groups. Maybe I'm wrong, but that's how I understood it.

I have been in touch with some people who are active in several hep c groups in the UK, who made a compilation CD to raise funds. They asked my hubby if he wanted to be involved and he contributed with a tune. The CD is sold online and through the different groups and the proceeds go to they different groups. This is just a small part of the work they are doing.

And people are actively involved all over the world. People are doing something to make a difference.

I don't know anything about Chris Taylor, so I cannot comment on that.

[mikesimon]

I'm refreshed by your succinctness.
Mike

[IAmTheWalrus]

Hahahah!

[Trish77]

"Hi Trinity, that's 300,000 HIV patients and 177,000 are gay. I think if we must partner with another disease it should be diabetes. HIV has done nothing in the last 8 years to help mono or "other disease" confected HCV patients. 1/3 sounds like a lot until you realize just how few with HCV have HIV."

I fail to see what the numbers of gay amongst those with HIV have to do with anything or why you quote this part.  

It's an uncomfortable partnership at times with AIDS/HIV organizations however they already have the lobbying and funding and they HAVE put it into supporting those with HCV only as well, not just co-infected.  I really don't see where Diabetes groups have felt any affinity whatsoever with HCV.  Not that it couldn't happen, but it's not anywhere close to happening.  I really don't see that 1/3 of people with Diabetes also have HCV as is the case with HIV/HCV co-infected so don't see at all where you're coming from.

As for Taylor himself, that's a whole separate issue.  He himself may not be a good representative.  That doesn't throw out the whole WHA.

[nygirl7]

As I have understood it, WHA is a body that is helping to coordinate many Hepatitis groups all over the world. There are a lot of volunteers working in the different groups. Maybe I'm wrong, but that's how I understood it."

Unless you yourself are a volunteer or devote any of your time at all trying to help with this cause then I think it all still sounds like sour beans to me.  It's pretty awful to make fun of people who are trying to do something about it when you yourself are not doing a damn thing except complaining about it all.

[Diane12855]

Thank you for posting this. I didn't know such a thing was available. Then I got to see all the interesting things on youtube about hep c.

I even shared it with all my friends on Facebook, so now a bunch of non or unknown heppers had a chance to see it too. Might be a good idea for everybody on here with a Facebook account to post so all of their friends can see it too.

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

[HectorSF]

"HIV has done nothing in the last 8 years to help mono or "other disease" confected HCV patients."

I think that most people now understand that hepatitis, HIV, an other infectious diseases are not transmitted between people by casual contact. This has helped to reduce the stigma around our disease and has educated people in the public that do come in contact with blood and other bodily fluids, how to take adequate precautions when appropriate. I.E. dental dams, gloves and other protective gear for medical personal and others, etc.

And perhaps most importantly for members of this forum who are still carriers of HCV. The next generation of treatments for HCV. The knowledge to make anti-viral meds comes directly from the knowledge and experience learned from the development of HIV meds. The new STAT-C drugs (Telaprevir, Boceprevir, etc.etc.) which are now in pharma pipelines, clinical trials and coming on to market in the next few years will increase cure rates by possibly 50%. Can't see how that is a bad thing for us with HCV.

Cheers!
Hectorsf

[JennyPenny2009]

I agree with what many of you have said here but I think NYGirl comes closest to my feelings on the subject. And Marcia, the CD is fabulous. Thank your hubby for his part in it.

For those of you who do believe that May 19th was World Hep Day, I wish you could have been on Capitol Hill. It was heartwarming, rewarding, invigorating, and motivating. Little Elijah spoke. He is a 5 year old on treatment right now. There wasn't a dry eye on the lawn.

It truly was wonderful to see the comraderie between those infected, those co-infected, those detected and not detected, those with HBV, HCV and their caregivers all in their yellow shirts. The legislators who support the efforts to tget us more funding spoke eloquently as did many of the advocates. It was truly a great day.

[Cory255]

I think it is a good thing there is World Hepatitis Day.  I didn't know about this.  The more awareness about Hep C the better.....

It really should only be one day out of the year though.....  Just like any other holiday or awareness day for that matter.  You can say, guess what,  Its that time of the year.....  tis the season.....  

[willing]

many thanks for the update and for your participation.

Saw a bumper-sticker this afternoon that reminded me of this thread: "The proctologist called after looking at your scans - guess where he found your head".

[HCVet]

Had Med Help not deleted my post it would have made since the breakdown on how many with HIV have HCV and just who they are. For some reason Med Help fail to see the importance to educated members on the real situation with the Ryan White Care Act and current bills before congress that restrict services to non HIV infected patients, most of us. If you don't have a "high risk" factor, then you're not allowed to go to the STD clinics.

The post continued to say we see very little benefit for HCV patients that receive Hepatitis B vaccines because of its uncertain success rates. Combine lack of recommendations for immune response testing, does create a false sense of security because patients are taking risks that otherwise would have been avoided.  HBV is an STD...  

So all these folks with good intentions, lobbying for support of current legislation are actually cutting our throat:( We need real service for patients not leftovers based on falsehoods.

World Hepatitis Day is now just another tool in HIV's global design to capture the cash and control the message; true or not. It is managed by out-of-control funding used to lobby legislators and for what? HBV vaccines... Soon you will hear from the founder of WHA and why he quit which just might open eyes how hoodwinked most are.


We need to stop the cozy relationship between Public Health and  private industries such as Merck Pharmaceuticals, the producer of the HBV vaccines, who appoints as head of vaccines, "the fired" CDC director, Julie Gerberding; original mastermind behind the merge of HCV into STD divisions.  

All Surgeon Generals can't be wrong calling for an HCV General Awareness Campaign. As long as folks follow blindly, or prejudice moderators delete the truth, things will never change. I urge you  to read before supporting anything.  Lets unite for HCV legislation that does help all patients not pick and choose who gets assistance.

Hope you have a chance to read this before they delete it again:(

[desrt]

Thank you for everything you do. You can be my spokesperson any time.

[HectorSF]

"Mastermind" Dr. Julie L. Gerberding "Fired?"  Shocking...

"Director of Disease Control Centers Resigns"

By THE ASSOCIATED PRESS
Published: January 10, 2009

ATLANTA (AP) — Dr. Julie L. Gerberding has resigned as director of the Centers for Disease Control and Prevention and will be replaced on an interim basis by a deputy as of Jan. 20, the day President-elect Barack Obama is inaugurated.

Her resignation was announced in an e-mail message to employees on Friday night.
Mr. Nowak said in a prepared statement that the Bush administration, “as part of the transition process,” had requested resignation letters from “a number of senior-level officials, including Dr. Julie Gerberding. This week, the administration accepted Dr. Gerberding’s resignation, effective Jan. 20.”

WASHINGTON (Reuters) - Most of the heads of the U.S. agencies under the Health and Human Services Department will be replaced by their deputies by January 20, when Barack Obama is sworn in as president, employees learned on Friday.

An e-mail issued on Friday evening listed all of the agency heads who will go, ranging from the director of the U.S. Centers of Disease Control and Prevention to the head of the Food and Drug Administration.

Incoming presidents traditionally name the heads of agencies, especially with a change of party. Obama, a Democrat, is replacing Republican George W. Bush.

Obama has named Tom Daschle, a former senator, to be head of the Health and Human Services Department. Daschle has said he will act quickly to name permanent new heads of agencies such as the FDA.

Here is a list of some of the affected agencies:

FDA - Frank Torti, now principal deputy commissioner and chief scientist, will replace Dr. Andrew von Eschenbach.

CDC - William Gimson, now chief operating officer, will replace Dr. Julie Gerberding, who resigned this week.

Rear Adm. Steven Galson is already the acting U.S. surgeon-general.

Center for Medicare and Medicaid Services - Charlene Frizzera, now chief operating officer, will replace acting director Kerry Weems.

Agency for Healthcare Research and Quality - Dr. Carolyn Clancy will stay on as director.

Administration for Children and Families - Curtis Coy, now deputy assistant secretary for administration, will replace Daniel Schneider.

National Institutes of Health - Raynard Kington is already acting director after Dr. Elias Zerhouni resigned last year.

Substance Abuse and Mental Health Services Administration - Eric Broderick will stay on as acting administrator.

;-)
Hectorsf

[HCVet]

>>I think that most people now understand that hepatitis, HIV, an other infectious diseases are not transmitted between people by casual contact

Hector, HIV isn't but HCV can be, like sharing piercing jewelry or tattoos, razors... and let's not for get Las Vegas or the multi VA's across the country that reuse medical devices against the manufacturer recommendations. HCV is 100 times more infectious that HIV.

We attended and spoke at the FDA hearings on DAA's and the pharmaceutical's intention is to rid INF and Riba from the SOC. Unfortunately, we are many many years from any effective treatment yet folks lobby only for HBV vaccines:(  The bill before congress does not provide for research.

Here's a link to view the presentation http://hcvets.info I'd like to also note, no one from NVHR or NASTAD were there.

[HCVet]

Well she resigned by force, call it what you want. The day Obama took office he fired her and rightly so.... 8 department directors quit under her watch, stating junk science...

[JennyPenny2009]

>>I think that most people now understand that hepatitis, HIV, an other infectious diseases are not transmitted between people by casual contact


" HIV isn't but HCV can be, like sharing piercing jewelry or tattoos, razors... and let's not for get Las Vegas or the multi VA's across the country that reuse medical devices against the manufacturer recommendations. HCV is 100 times more infectious that HIV. "
............................................................
Since when is this casual contact? It seems you do not kmow the definition of those words.

H.R. 3974 does NOT restrict services. It integrates them. Reinventing the wheel is wasteful.

P.S. thanks Willing & Desert

[HCVet]

He asked for her resgination, and that's fired in that world.

[HCVet]

,,,,Declining morale, trust

Various personnel surveys of CDC staff, analyzed by the Journal-Constitution, have documented increasing employee concerns about the agency's direction, trust in its leaders and the adequacy of agency resources.

...And there is a specific distrust of Gerberding herself and the agency's chief operations officer Bill Gimson, according to interviews with their supporters and detractors. That's coupled with what some say is a climate of fear that discourages honest communication, and an effort to "spin" the official information disseminated to employees.

"They don't trust Julie and Bill," said Dr. Dixie Snider, who retired this summer after working in CDC's Office of the Director for 13 years, including since 2004 as Gerberding's Chief Science Officer. "It's a reality that the leadership is aware of. I think everybody is just befuddled about how do you fix that."

Trust issues range from a general lack of confidence that CDC's leadership will "do the right thing" when faced with political pressure from Washington; to questions of whether the reorganization was motivated more by a desire for control and power than designed to fix anything that was broken; to a belief that official staff communications are designed more to burnish a public relations image than give employees the unvarnished truth, according to interviews.

...The lack of trust in CDC's top leadership is publicly reflected in dozens of postings on an independent CDC employee blog that began publishing on the Internet in January, as well as in a governmentwide poll of federal employees. Between 2002 and 2004, CDC employees who said the agency's leaders maintained high standards of honesty and integrity dropped from 51 percent to 45 percent.

"There is a disconnect between what is said is happening and what we see or feel is happening," said Bob Keegan, creator of the blog www.cdcchatter.net, which he said gets about 30,000 hits a day. Keegan, deputy director of the CDC's Global Immunization Division, is a recipient of the agency's Watson Medal of Excellence, a top employee award.

Carlos Alonso, a health communication specialist in CDC's National Center for Health Marketing, is a reader of the blog, which he said "furnishes a sobering and welcome counterweight" to official CDC information.

"Suffice it to say that when respected employees of any organization decide to take to the streets, or design external blogs to voice frustrations and outrage, the commonly accepted avenues of internal communication have either lost their credibility, or broken down completely," said Alonso, a 23-year CDC employee.

Gerberding declined to be interviewed about the trust issues being raised by her staff.

Proof of harm?

A lack of trust, an exodus of leaders and a major reorganization is a potentially dangerous mix, said Donald Kettl, director of the Fels Institute of Government at the University of Pennsylvania.

"Can you spell FEMA? It's the same kind of issue that they faced," he said.

"If there is a high level of conflict and tension, it makes it hard for people who need to, to work together - and work well - because they need trust," Kettl said.

...Gerberding and others in the agency's senior leadership point to CDC's responses to the deadly outbreak of Severe Acute Respiratory Syndrome (SARS), the monkeypox outbreak, the agency's handling of flu vaccine shortages in 2004 and response to Hurricane Katrina as proof the agency hasn't suffered.

...as the reorganization was beginning and before the departure last year of two key leaders who ran those responses. Dr. James Hughes and Ostroff, the director and deputy director of CDC's National Center for Infectious Diseases left the agency last year...
http://www.ajc.com/metro/content/metro/stories/2006/09/09/0910MESHcdcmorale.html

when Congress decided to fund HIV/AIDS, an industry emerged.  Like other industries, the HIV/AIDS industry is attempting to grow.  Its growth strategy is to control the HCV epidemic.  Notable, "generalizing" deadly bloodborne pathogen diseases, like HCV, enforces HIV non-profit's purpose for its mission above public health needs. The reorganization and prevention strategy plan has failed taxpayers and the military by separation of government away from entrusted responsibilities with lethal consequences for the public health.

[HCVet]

one more thing, no president has ever asked for the head of the CDC resgination when taking ofice before this, so call it what you want, Julie was fired...

[JennyPenny2009]

And one more thing....for everyone who has been reading the bs about Chris Taylor.....his position at NASTAD is Senior Manager, Viral Hepatitis Division. He was also the Hepatitis C Coordinator of the State of Iowa before going to NASTAD....but he doesn't make a good rep, does he? Puhlease.

[Trish77]

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

I don't see much to quibble with here.

[HectorSF]

Thanks Trish!

“NASTAD calls on Congress to provide $50 million in FY2011 to
enable CDC to expand hepatitis prevention services including counseling,
testing, and referral; to implement chronic hepatitis B and C surveillance
systems; to educate the public and medical providers about viral hepatitis;
and to assist states in vaccinating high risk adults for hepatitis A and B.

Hepatitis B and C have never been given adequate attention by policy
makers and the health system overall. This indifference has resulted in
millions of dollars of unnecessary medical expenses and avoidable morbidity
and mortality,” commented Scofield.“ (Julie Scofield, NASTAD’s Executive Director)

I couldn't agree more.

As someone who is starting to experience the decompensation symptoms of cirrhosis cause by HCV, I believe anything that can be done to prevent and cure others infected by chronic HCV is not only a compassionate approach but a fiscally sound approach as well.
Education, prevention and treatment costs vs. the ongoing costs for treating advanced liver disease, hospitalization, liver cancer, liver transplant or palliative hospitalization costs.
----------------------------------------------------------------------------------------------------------------------
In honor of World Hepatitis Day, President Obama released the below Presidential Message:

    "I send warm greetings to all those observing World Hepatitis Day.

    Millions of Americans are affected by viral hepatitis, and too many do not know they are infected. As a leading cause of liver cancer and related complications, viral hepatitis presents a major public health challenge at home and abroad. We must work together to raise awareness, increase access to services, improve preventive care, and end the silence surrounding this life-threatening illness so at-risk and infected individuals can receive the assistance they need.

    Across the United States, countless health care professionals, researchers, and advocates are working to achieve these goals, and our Nation’s future is more hopeful because of their dedication. Their tireless efforts are bringing us closer to the day when words like “incurable” are no longer a part of our vocabulary.

    On World Hepatitis Day, we renew our support for people living with hepatitis and their loved ones, and for those who are working to improve treatment and prevention. I wish you all the best as you join together to take action against this terrible disease."
-------------------------------------------------------------------------------------------------------------------------

Cheers!

Hectorsf  

[HCVet]

>>H.R. 3974 does NOT restrict services. It integrates them. Reinventing the wheel is wasteful.

Wasteful!!!. That statement is really sad... In 2004 the CDC implement new HIV disease prevention services and launched a strategy aimed at reducing the number of new HIV infections by increasing the proportion of infected persons who know their status. CDC required, in order to receive a federal grant, grantees must employ standardized elements for prevention, interventions and evaluation activities.

Ryan White Care Act was amended and mandates that these standard elements are specific for HIV/STD disease. This legislation restrict services based on risk assessment. In other words, patients who lack proposed risks/standard elements, do not receive support services. Read it.

Yes, HR 3974 does restrict services because it too, addresses only high risk awareness . Why do you think so many are upset with it and NVHR/NASTAD?

Are you aware HCV is closely related to the Dengue virus? It is also related to West Nile and Yellow Fever. That there is funding for these diseases and a vaccine in the works??? If you are, how can you possible support research and prevention under the umbrella of HIV?

As for Chris, ya right, that's why he lied when he said he was co infected to get this job with WHA.   He is not sincere in his efforts. He actually chuckled in a meeting about how easily he got his foot in the door and how little effort his position or continual anointing is requiring.

Yea, sure, just what we need....  I know full members of WHA that were not notified of the N American elections. It was pick and choose who votes. Wonder why WHA did that? We'll answer that question soon.

Please educate yourself, read the RWCA, these are the rules we must follow now and reflected in H.R. 3974's declarations of "High Risk" Awareness.  There is a national campaign to warn gays about sex, but no campaign for the Vets, or those that get body modifications. How crazy is that and shows the complete disregard for the most infected population with HCV, veterans... And no, the VA does not warn vets that do not attend the VA clinics...  few attend the clinics.

But this proposed bill ignores that fact, and is sucking up to the VA, giving praise. Another insult...Forget 1 in 12 because the Vets are 1 in 5 or 2.6 million and rising, give or take the dead now. We deal with the high volume of kids coming home from war with HCV again. Not HIV and  because of this charade disguised as risk factors. And until it is addressed, rest assured, many are ready to respond and will do what ever it takes to prevent this bill from passing. Go ask NVHR to include the vets and see the response you get. We know, we tried and the response... That's the VA's job! We can't step on toes... And the VA's position is delay, deny and wait for the vet to die... So for their sake... educate yourself to what is truly happening here. It's all about money, right or wrong.

[HCVet]

>>those who are working to improve treatment and prevention

Hector, that would be us, certainly not the others excluding million that did not get HCV by sex.

[Trish77]

I want to understand your issue.  It's that the needs of Vets with HCV are being ignored and not represented?  

WHA seems like a relatively young organization.  These statements seems like they come from an organization in development:

"Membership
The World Hepatitis Alliance is finalising its membership criteria, and will be accepting applications for membership from July 2010. "

"The first official elections of the World Hepatitis Alliance will take place in 2010; and for the first time the World Hepatitis Alliance will appoint board members in Africa and South East Asia."

If the WHA is moving to elections this year and if a segment is unhappy with the appointee then perhaps it helps to be in a position to vote for the representative.  Not everyone gets it right from the starting gate and has to evolve.  However, seems they are at least on the right track with the right ideas.  

This resolution seems significant to get agreement from all 193 member states.  To my limited knowledge, that is a rare occurrence.

http://www.worldhepatitisalliance.org/en/Policy/WHO_Resolution.aspx

"
WHO Resolution

Following extensive lobbying from the World Hepatitis Alliance and patient groups around the world, the World Health Assembly has agreed a resolution on viral hepatitis. The resolution was supported by all 193 member states, reflecting the international realization that action to tackle these diseases is now urgently required.

For the first time, the resolution recognises the global impact of hepatitis B and C – two diseases that kill one million people a year and which to date have not received the global attention they deserve.  The World Health Assembly has established a robust framework to deliver improvements in prevention, diagnosis, treatment and awareness.  The resolution clearly states the need for global coordinated action to tackle viral hepatitis backed by dedicated resources.  It also provides global endorsement of World Hepatitis Day as the primary focus for national and international awareness-raising efforts.

We would like to thank everyone who supported the campaign to ensure this resolution was passed. The World Hepatitis Alliance and supporting groups now look forward to working with governments and the WHO to begin the urgent task of preventing new infections and providing much needed support to the 500 million people living with viral hepatitis worldwide."

This leads to the next step which is...

[Trish77]

Viral Hepatitis Global Policy

Developed by the World Hepatitis Alliance in partnership with the World Health Organization (WHO), 'Viral Hepatitis: Global Policy' provides, for the first time, a comprehensive analysis and overview of the policies and programmes in place for viral hepatitis across the world.

Approaches to the prevention, diagnosis, treatment and care for hepatitis B and hepatitis C vary significantly from country to country. This research project was initiated in 2009 in order to gather the data required to understand the work currently underway across WHO Member States and where the WHO’s assistance would be of benefit to them. The report provides global and regional level overviews of the findings followed by brief summaries of the policies and programmes in place in each of the 135 Member States that submitted information to this study.

Dr Keiji Fukuda, WHO Special Adviser to the Director-General on Pandemic Influenza, speaking at the time of the report’s launch said, “The WHO commissioned this research to provide a clearer understanding of the global viral hepatitis policy landscape. The responses reveal significant variations between countries, from those that have not yet begun to tackle viral hepatitis to those with comprehensive policies to prevent and control these diseases. What emerges is the need for a more consistent, co-ordinated approach and the desire of Members States for support from the WHO in delivering this.  This study provides an important background to the discussions on viral hepatitis and the adoption of a resolution at the upcoming 63rd World Health Assembly.”

http://www.worldhepatitisalliance.org/en/Policy/2010PolicyReport.aspx

There is a link on that page to download the full report to be made at the 63rd World Health Assembly which is happening this very weekend.

The report is not at all light reading at 184 pages.  

Will be interested to see the results coming out of the Assembly this weekend.

[Marcia2202]

This is what I got in an email from a friend in England yesterday. -----------

Hi Everyone

I am very pleased to pass on the news that the WHO has finally passed a resolution on Viral hepatitis
so many many thanx to each and everyone of you for your support in achieving this. It will make a massive difference for
the 500 million people suffering from hepatitis B and C around the world and is the dream result we where hoping for with this campaign


See Press release below

YEAH!!!!

Jxx
________________________

Switzerland, Geneva.  Friday 21st May, 2010 – The World Hepatitis Alliance has welcomed the agreement of a World Health Organization (WHO) resolution on viral hepatitis by the 63rd World Health Assembly in Geneva today.

“Today is a momentous day for the global hepatitis community” said Charles Gore, President of the World Hepatitis Alliance.  “This resolution is the result of tireless campaigning by hundreds of patient groups around the world.  The World Hepatitis Alliance looks forward to working with governments and the WHO to begin the urgent task of preventing new infections and providing much needed support for the 500 million people living with these diseases worldwide.”

For the first time, the resolution recognises the global impact of hepatitis B and C – two diseases that kill one million people a year and which to date have not received the global attention they deserve.  The World Health Assembly has established a robust framework to deliver improvements in prevention, diagnosis, treatment and awareness.  The resolution clearly states the need for global coordinated action to tackle viral hepatitis backed by dedicated resources.  It also provides global endorsement of World Hepatitis Day as the primary focus for national and international awareness-raising efforts.  

[Trish77]

Any link to that "robust framework"?  This is only the beginning...a good beginning but still...have seen resolutions passed on other things at the UN for example, full signatories and agreement in principle however follow-through with policies, funding and action was sorely lacking.  Not being negative, moreso saying that remaining to task to see a resolution through to implementation would be required.

This would require patient groups in all the various countries to demand of their governments to take action to comply with the resolution.

Would be interested to know if this resolution got full signatories from all member states as well.

Thanks for posting this, Marcia.

[Marcia2202]

Unfortunately I only have that email.

A good step in the right direction!

[HectorSF]

>>"those who are working to improve treatment and prevention" the President said that and I agree 100%.

"that would be us, certainly not the others"

I haven't heard about your experience being treated for HCV, but my experience is that without "the others", health care professionals, researchers, and HCV advocates my fate would have been sealed long ago.

Based on my personal experience:
My doctors have been available for me on weekends when I needed them. They were not paid for this time, but choose to help me as compassionate human beings.
My doctor at the liver transplant center who is internationally known as one of the leading experts in the treatment of HBV and HCV works tirelessly day in and day out to help persons suffering through end-stage liver disease, she has helped me in ways that I can't describe. I have also worked for many years previous to knowing I would ever have the medical issues, in the pharma business. I know the work they do and what it is like to work in a field that products help people suffering from various diseases. These people are not how you characterize them as being.

I am sorry if your personal experience has been so negative. I do wish the best to you and any person suffering with any illness. Not just HCV. Yes, there are many things in this world that are terrible, unfair and wrong. I think every thinking, feeling adult knows this. But to blame a group of people who have and continue to suffer with a incurable disease such as gay men, for taking away "our rights" is a inane as saying every Vietnam vet is a baby killer.

I find it quite offensive and repulsive to see this type hate speech on a forum that's mission is to share information based on our personal experiences with this disease and help persons with their questions about hepatitis C and all the implications it can have on one's life.

I also find it odd that you direct so much anger and hostility toward people suffering from HIV when their advocates did and are doing exactly what you say you want to do for us suffering with HCV. Organize and change the US medical system to recognize and respond to our particular medical needs. Isn't it ironic that many of the same statements you make about the "evil" pharma industry and the medical community are exactly what HIV advocate groups like "Act Up" where saying in the 80s and 90s? Only you can answer this.

Peace.
Hectorsf  

[Trish77]

I agree .. a step in the right direction that gives people something to lobby WITH.  Agreement signed now let's see the subsequent action.  I would think the WHA website will have an update eventually.

Jenny...feels a little strange talking around you .. I'm sure you have information on this as well so speculating based on what is there.

[jusjames]

are you confusing WHA with the WHD?
  one is an event world wide , one is an organisation supposedly world wide run by unelected people very different indeed....

[JennyPenny2009]

Sorry Trish, I'm not sure I understand your concern. Feel free to explain it here. I have nothing to hide. And actually a lot of the bs stuff goes in one ear and out the other. I don't usually pay too much attention as there is too much to do and if I get bogged down in the politics and drama, it just makes me feel sicker. Occasionally I see something like what has been said about a person (Chris) whom I know and have seen how hard he works, and it p*sses me off enough to say something back. Just want to make sure that people see the other side and don't jump on the negative bandwagon.

[Trish77]

"Sorry Trish, I'm not sure I understand your concern. Feel free to explain it here. I have nothing to hide."

I'm not sure I understand your comment, that you have nothing to hide.  I sent you a private pm asking your feedback on an aspect we struggle with in our local Hep C group.  If I wanted to post that on the forum, I would have done so.  If you don't wish to answer that privately, fair enough.  I'll decide if I want to post that on the forum and likely not.  It's an uncomfortable situation that I'm not prepared to "out" myself on.

As for my question to you regarding Chris Taylor, I'll post that here and give you the opportunity to answer that on the forum.  What I asked you in private was what you see as the issue, that if he's doing such a great job and was such a popular choice, where does the opposition to him come from in your opinion?  That's a loose paraphrase but that covers it.  I was asking your insight on that question.

Trish

[HCVet]

>>I want to understand your issue.  It's that the needs of Vets with HCV are being ignored and not represented?  

Yes, that is a big part of the equation, but the bigger picture is not only vets are left out but anyone that does not have an HIV risk factor. ie sex, drugs. HCV patients do not and will not receive services without a high risk factor at STD clinics.

If the CDC would rid this ridicules High Risk approach for identification, services and prevention, much more could be accomplished and lives spared.  Recognition of real HCV transmission would make it possible to stop the spread of HCV and for Vets to get help due to the multi-incidents in lack of universal precautions, absent on many occasions, but mainly during the huge cattle calls for vaccination.

WHO states: the only means of protection from the Hepatitis C virus are the implementation of universal precautions ."

[HCVet]

. But to blame a group of people who have and continue to suffer with a incurable disease such as gay men

Wow hector, slow down, I NEVER said that...

And I'm not anger either, I've received more insults by far. I never shared my personal treatment history with you. Sorry for your pain but don't blame me.  To each his own, my point was transmission, and that post was deleted, no prejudice intended.

[HCVet]

>.I also find it odd that you direct so much anger and hostility toward people suffering from HIV

Hector, my sister is co infected, so to say what you did is so wrong. Facts are facts and I've seen way too many die without help, to pull any punches for anyone's sake but HCV patients. Sitting back and letting non profits pick and choose who gets help is not in my vocabulary.

[Trish77]

"anyone that does not have an HIV risk factor. ie sex, drugs. HCV patients do not and will not receive services without a high risk factor at STD clinics."

Hep C is not an STD.  What sort of services are you expecting from an STD clinic for persons with Hep C that would not be available any other way?  Not really understanding why this is an issue.

"Recognition of real HCV transmission would make it possible to stop the spread of HCV and for Vets to get help due to the multi-incidents in lack of universal precautions, absent on many occasions, but mainly during the huge cattle calls for vaccination."

I don't see the tie-in between STD clinics and instituting universal precautions when doing mass innoculations in the military.  Seems two separate issues.  Seems that the other services being delivered are necessary and services to Vets are woefully lacking.  So why not join existing successful lobbying movements and get your issue on the agenda as well instead of fighting people who could be your allies and support your issues?  Not really getting it here.

[HCVet]

I don't see the tie-in between STD clinics and instituting universal precautions when doing mass inoculations in the military

Trish... all federal money/grants fall under the guidance of the CDC's NCHHSTP standard elements definition to identify patients and provide resources. Grantees must abide by thes regulations or no funding. Lack of universal precautions are not part of  the standard elements and anyone without predefined risks such as sex, drugs can't get help either.

Guidelines for any federal HCV money must meet the Ryan White Care Act/law  standards because HCV is an HIV disease now. These guidelines restrict patients services like those provided for in H.R. 3974 and that will only be offered in STD clinics. Yes, it's true... If you don't get a pass to the STD clinic, no services are provided. We tried to reason with these folks and were told, we have to start somewhere... it saves on resources. Deal with it...  

[JennyPenny2009]

I never got notice of a PM, I will look now and of course I will answer it if I know the answer.

As for the opposition to Chris. I honestly do not know. I asked my husband who has worked on a few committees with Chris and on the board of NVHR and he has no idea either. Perhaps it's jealousy. Trish, it may seem like there is a lot of oppostiion, but the Medhelp Community is very small. I think you're getting a skewed view.

Looking for your PM in a minute.

[JennyPenny2009]

There is ABSOLUTELY nothing that restricts funding for HCV to Ryan White funds in 3974. Citation please.

[HCVet]

you missed the point, in order to receive grants the funding in H.R. 3974 is restried to CDC's NCHHSTP standard element definition to identify patients and provide resources and it's binding under RWCA legal authority that restricts services.

[JennyPenny2009]

Trish, I answered your questions in a PM. Please look. Thanks.

[Trish77]

Got it, JP .. much appreciated.  Will digest that.

Trish

[CoWriter]

"but he doesn't make a good rep, does he? Puhlease."
-----

Name ONE good thing he has done during his term at tghe WHA.....ONE! And picking up trash after the rally in DC doesn't count....LOL

Co

[Trish77]

"As for the opposition to Chris. I honestly do not know. I asked my husband who has worked on a few committees with Chris and on the board of NVHR and he has no idea either. Perhaps it's jealousy. Trish, it may seem like there is a lot of oppostiion, but the Medhelp Community is very small. I think you're getting a skewed view"

All this is relatively new to me so I'm really just asking questions in this thread because I want to form my own opinion based on the information that comes out.  It does matter to me because I'm not one to blindly sign onto something with "Hep C" or "HCV" or "Hepatitis" in the title and just ride on the bandwagon.  I want to know that where I put my name and my efforts is something I can align myself with in good conscience.  So trying to understand these things.  

Chris Taylor represents North America which means he represents Canada.  So very interested and curious what he's done with regards to representing Canadian interests as well.  They'd be different in light of the differing healthcare systems.  Some the same, some different.  

I went to this site:  http://hcvets.info/ - it's outside the MedHelp community. A petition going for removal of Chris Taylor.  Have to say, not a great many signatures on that petition if what is shown is all of them and some clearly not aware of the issues. Just all very...curious at this point.

[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

[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

[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]

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]

"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]

>>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]

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

[HCVet]

>>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.  

[JennyPenny2009]

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

[JennyPenny2009]

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.

[HCVet]

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...

[HCVet]

>>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;(

[JennyPenny2009]

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.

[HCVet]

>>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...

[CoWriter]

" 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

[Trish77]

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...

[CoWriter]

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

[JennyPenny2009]

Thanks Trish. I didn't see the discrepancy either. HCVet, I will answer your post. Just have to run out for a few hours.

[nygirl7]

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?

[Trinity4]

"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?

[JennyPenny2009]

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.

[HCVet]

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

[HCVet]

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.

[JennyPenny2009]

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.