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475555 tn?1469307939

Dialogue with NVHR

After I posted the thread "News article denouncing US Gov underfunding for hep C", I sent a query to NVHR, the source of the article, and received a lengthy reply from its Director, Martha Saly, to which I in turn responded. Because I think this concerns everyone with hepatitis C, I am posting it here. (As it exceeds the 8,000 character limit, I have split it into two posts.)
=================================

Dear Ms. Saly-

How can the NVHR help, when its sponsors are the very pharmaceutical companies that are profiting from the HCV epidemic?

Yours,
Mike

======================================================

Dear Mike:

Why does NVHR take pharmaceutical company funding to do its work…. ? That is an excellent question and deserves a thoughtful answer. First, the reason we include the names of our pharmaceutical sponsors on our website is to maintain transparency. We do not intend to mislead the public or our constituents about the source of most of our funds. NVHR also benefits indirectly, but openly, from a small amount of funding from the Centers for Disease Control and Prevention (CDC).

The reality is, we would love not to need their money and support, but here are many reasons why we must turn to pharmaceutical companies to keep on doing our work.

In the ten years that I  have been active in this field (6 of them involved with NVHR), I have yet to find more than passing interest in viral hepatitis prevention and education among the legions of private foundations in America. That is not to say that there is no foundation or private money available to viral hepatitis interests, but it has been precious little. We have not been successful at gaining the attention of philanthropic organizations such as the Bill and Melinda Gates Foundation and others of their stature.

While 5 times more people in the U.S. suffer from hepatitis B or hepatitis C  than HIV/AIDS, we have found that there is no parity in public or private funding and much less attention to these diseases. NVHR does not advocate for reducing support for HIV/AIDS or any other disease, but we are working very hard to make hepatitis visible and to make people care about it. We’ve been told we are just not as “sexy” as second hand smoke or obesity.

A recent report by the Institute of Medicine noted that the general public, people who suffer with hepatitis B or C, and medical providers are staggeringly ignorant about the scope and consequences of viral hepatitis, including physicians who are frighteningly ignorant of diagnosis and treatment protocols! The IOM concludes that the current system is not working and there is much work to be done to address this burgeoning epidemic.

Our highest priority at NVHR is to get the federal government to pay attention to hepatitis. The CDC Division of Viral Hepatitis (DVH) is a part of the Center for HIV, STD, TB, and Viral Hepatitis. DVH receives only 2% of the overall funding of the Center. There is an average of $90,000 allocated to each state health department to address hepatitis B and C. That is pitiful! There is simply no money to support a public awareness campaign from the CDC that would elevate viral hepatitis to anywhere near HIV, breast cancer, heart disease or other disease specific campaigns. If the federal government increased funding to DVH through the appropriations process or by passing HR 3974, the Viral Hepatitis and Liver Cancer Prevention Act, there would not only be opportunities to fully fund state health departments to address viral hepatitis, the entire infrastructure – including community organizations – would likely benefit. Imagine the impact!

Of personal concern is that NVHR represents about a hundred community-based organizations. Many of these are small, do amazing work, and survive on a shoestring. Believe me, every time I apply for a grant, I think that the money that goes to NVHR might mean that a small organization will not get funded. What drives me to continue is the belief that if NVHR is successful, our member organizations will be successful.

Regarding the funding and support we get from pharmaceutical companies, I must tell you that NVHR does not adhere to anyone’s agenda but its own. NVHR’s steering committee, which is elected by our membership, sets annual priorities and sticks largely to our identified objectives. The drug companies do not have a say in the policies or structure of NVHR. They do not prescribe our actions. Having said that, I will also say that we have enjoyed not only the financial support of the companies acknowledged on our website, we have also benefited from the expertise and influence of these companies at various times. Frankly, they can afford to hire people with skills and credentials that we may not be able to access otherwise. It has been my personal experience, over many years of working with them, that there are individuals within these companies who have a genuine interest in viral hepatitis and have done everything in their power to help the grassroots community. Yes Virginia, there are human beings behind those big names and corporate logos – at least a few…. I can’t tell you how many people have left our movement to go to work for drug companies. While we chide them for going to “the dark side” we also feel just a bit better knowing that someone inside understands what we need.

Would I like to just say no to pharma funding? You bet I would! I would like to see a day when everyone in this country can identify the risks for hepatitis b and c in the same way they can tell you how AIDS is spread. I would like to see a day when the federal government pays attention and pays up! I would like to see a time that there is funding to address viral hepatitis from the grassroots to the treetops. Until that day I must find any way possible to make that happen.

I hope this letter answers your concerns. I am more than a bit curious as to why you (and ICIIU?) are interested in this issue.

Sincerely,

Martha Saly
Director
National Viral Hepatitis Roundtable (NVHR)

========================================================

Dear Martha Saly-

Thank you for your detailed reply to my query. I will address first your question about myself and the ICIIU, and then I have a few remarks regarding funding and sponsorship.

The ICIIU was an international Internet users organization created in 1998 to represent the interests of end-users in the struggle for influence in the private organization (finally, ICANN) that was granted control of the Internet databases, that is, the domain name system (the "root") by the U.S. Department of Commerce in 2002. Our struggle failed because of the duplicity of the U.S. Government, which although it had issued a white paper calling on all stakeholders to self-form a newco to oversee the root, actually had its own agenda which excluded end users and gave control to large private corporations, corporations with which those members of Government overseeing the Internet were and are financially involved.

Although the ICIIU failed in its mission, I did learn an important lesson: you cannot believe what the Government says. It does not have the interests of the American people at heart, but rather the financial interests of its own members. And those financial interests conflict, in the area of biomedical research just as much as in that of allocation and control of the internet domain name system, with the interests of the users, those of us who need and must pay for services. It is a sad state of affairs when government has become so corrupt that it represents only itself and the personal selfish ends of its members, and not the public it is delegated to represent. However, that is where we are now in our history, and it is no use ignoring or denying it. [continued below]


66 Responses
475555 tn?1469307939
Dialogue with NVHR [continued]


What this seems to mean vis-a-vis health care, biomedical research, and clinical medicine, is that public funding goes to support and protect the profits of those corporations which have succeeded in corrupting government with well-paid sinecures on their boards of directors and with shares and share options; in brief, with economic power.

I was diagnosed, by pure chance in a routine blood test done for other reasons, with hepatitis C in 2008. I have so far received no treatment whatsoever, because I am deemed a slow progressor and am purported to have early-stage fibrosis (I say "purported to have" because there is as yet no reliable test for fibrosis stage!). I am supposed to submit to serial biopsies, in themselves dangerous procedures, which nevertheless do not give an accurate picture of disease progression; and perhaps at some future date, if the threat of cirrhosis, cancer, transplantation, and death becomes greater, be put on a regime of so-called antiviral drugs which have only a 25% chance of killing the virus (I am 65 and have genotype 1) yet are vastly expensive, and which will ruin my health in other respects, so that, even though I will probably still have the virus after treatment, I will have suffered irreversible physical deterioration, not as a result of the microbe, but of the treatment.

Yet at the same time other treatments have been found (therapeutic vaccines, fibrosis inhibitors, etc.) which have a real promise of eliminating the virus and/or the damage it causes to the liver, treatments that can be produced and sold for a fraction of the cost of the current so-called standard of care, and which have far fewer side effects. Why are these alternative treatments not developed and offered to people with this horrible disease? Because that would not be in the interest of the drug companies that are profiting so hugely from the sale of the drugs that, using their financial influence with government (read "power to corrupt"), they have succeeded in having granted the status of sole approved treatment available. Funding for other treatments is denied; the companies developing them are bought out or suppressed or their scientists co-opted; their trials go unsupported by medical institutions relying on grants from government and the pharmaceutical companies that profit from the policy of "no new HCV drugs", medical institutions directed by doctors corrupted by million-dollar sinecures in the form of consulting fees; and research on them is killed by laws, like safety criteria, applied discriminatorily. This corruption, a collusion between government, wealthy pharmaceutical companies, and research facilities for their own financial interest, is so far-reaching and its consequences so disastrous considering the number of persons infected globally, that it could with no exaggeration be considered a crime against humanity, on the level of the draining of the Amazon Basin and the Guarani Aquifer by agrobusiness.

The insurance companies would have put a stop to this unsustainable situation long ago if they were not themselves accomplices to it. But the medical system of the U.S. and of all the countries that have been coerced into copying it has been so designed that insurance companies profit from disease. And indeed our financial system, of which the medical system is a part, is a complex network of crimes, profitable to a few but disastrous to the many, which is why we are in the midst of a global and far-reaching financial crisis.

To return to the case in hand, naturally the more educated and experienced HCV infectees, grown desperate and furious by their intolerable situation, attempt to form themselves into pressure groups to revert it. To counteract such public offensives against their criminal behavior, public officials and the drug companies backing them preempt public action by creating their own domesticated and controlled public action groups. That is and always has been the policy of the U.S. Government, and it has been put into practice in this instance just it has in all other instances where popular revolt against unpopular government policies has threatened the status quo.

Your organization, the NVHR, is one of those organizations that has been created to pull the teeth of popular revolt against the crime of government and private complicity to deny hepatitis infectees an efficacious and affordable treatment. You, yourself, may not even be aware of this, or may be repressing your knowledge of it because of the benefits that accrue to you personally. But it is so nevertheless. The NVHR's usurpation of other more public-spirited organizations, and its provision of spokespersons who do not represent the community of infectees, is the proof.

You say: "Our highest priority at NVHR is to get the federal government to pay attention to hepatitis". This is nonsense. Of course the federal government is paying attention to hepatitis. It has put into practice those policies that will gain its members the highest financial rewards: hordes of panicked infected persons, and a sole costly and inefficacious treatment. You either err due to a hard-to-believe naivety, or are simply mendacious.

No pharmaceutical company funds an organization that does not promote its interests. NVHR's funding by the pharmaceutical companies that have cornered the market of HCV treatment requires that NVHR pursue those companies' interests. And that is what NVHR is doing, whether you know it and admit it or not.

Yours,
Mike
Avatar universal
Good job, Mike:) Well said. The truth is the truth period.... and you hit it on the head...

((((MIKE))))
233616 tn?1312790796
thanks, Mike, I actually found MArtha's response refreshing and will take it at face value.

I think there's an important concept here Mike....glass half full, or glass half empty.

sure, we could say the drug companies are in no big hurry to find natural cures they can't profit from, and that would have merit....tamoxifan was discovered, they patented a chemical form of the natural, and di make money...it htis case that was a good thing, since the natural was hard to cultivate and refine, and expensive as well...in the end, breast cancer patients are alive today thanks to those patents...
and they wouldn't have saved anything over the natural...

but let's keep in mind what docs and drug companies do...they try to understand and research mechanisms of disease, and cure them.
they then take those profits and put lots of them back into research to try to cure the next big disease...by these methods we've learned to cure and prevent more things in the last hundred years than in the last 4000 that preceded them.

here are a few words...just a few things I've been reading up on recently that are under investigation right now...there are hundreds, but these are just what I've been reading on this month:

Ion channel studies

electropolation vaccines

hydrophoic amino acid pair research.

tetraspanin CD81,  and it junction with junction Claudin-1,

cytokine blockers,

anti-CD81 antibodies,

mechanisms of the NS3-4A protease complex,

lipid metabolism,

anti-fibrotics,

protease and other inhibitors classes of course,

and a host of other mechanisms much too vast to even list in here are all being studied....thousands of studies costing billions of dollars are ongoing NOW as we speak for this disease.

and who does these studies?  Doctors, microbiologists and lab geeks.
and who funds these studies? Drug companies and governments.

so if I understand what you are saying, then all of this is for naught and a big conspiracy to keep folks from ever getting well?? Is that what you are saying?
Because, I do not want to misinterpret the intent of your message, so please tell me what you mean by

.>>>>>>>>>>Funding for other treatments is denied; the companies developing them are bought out or suppressed or their scientists co-opted; their trials go unsupported by medical institutions relying on grants from government and the pharmaceutical companies that profit from the policy of "no new HCV drugs", medical institutions directed by doctors corrupted by million-dollar sinecures in the form of consulting fees; and research on them is killed by laws, like safety criteria, applied discriminatorily. This corruption, a collusion between government, wealthy pharmaceutical companies, and research facilities for their own financial interest, is so far-reaching and its consequences so disastrous considering the number of persons infected globally, that it could with no exaggeration be considered a crime against humanity, <<<<<<<<<<<<<<<<<<<<

so Mike, you are saying in other words that all the efforts are murderous...that every thing that shows promise is supressed, that every doctor and reearcher is in the hip pocket of some greed drug lord...really?  every one of them??

if they want no new hcv drugs does it make sense that does are not in phase 3 trials?

I think you may be missing something I don't think the drug companies are missing.
that is that the hepatitis virus is now epidemic worldwide, that in short order there will not be one family on earth not infected with this virus, that worldwide 1 in 6 or 1 in 7 people now carry this virus, and in 20 years, absent cures, that could be 1 in 2.
Every other person could have hepatitis.

My guess therefore, is that the urge for self protection should grow exponentially and though I hate to see more folks get this, we can at least take comfort in the fact that if any disease was EVER positioned to come off the back burner and get fully funded and researched to the hilt, it's this one!!!
tell me why I'm wrong.

mb
1113735 tn?1273178030
I entirely agree with Mary and Mike. All I can say is that , they might find some solution ,if by any case one of their closest familly members become infected with on of those creaters. In other words, if Bear start knocking at their doors, maybe they'll get frightend, like we all are here!
Avatar universal
Martha Sally response to Mike- Quote "Why does NVHR take pharmaceutical company funding to do its work…. ? That is an excellent question and deserves a thoughtful answer. First, the reason we include the names of our pharmaceutical sponsors on our website is to maintain transparency..."

Mike, Transparency prevents subversion of law, corporate rip-offs, and corrosive self-dealing.  If you want government to work, you must be able to watch its inner workings.

Ask Ms. Sally, who, from their own organizational (NVHR) members, let alone the community, were consulted with the drafting of any legislation; including  when first introduced as the Hepatitis C Prevention and Control act back in 2001. The bill was proposed by NVHR but under it's prior name, the National Advocacy Council...

The answer is no one was consulted, including their own. The HIV groups drafted this piece of.... and puts all research and prevention $$ toward their agendas. Ask Ms Sally, how much funding they get from the AIDS orgs...

Out of 5+ million with HCV, less than 300,000 are co infected with HIV, and of that.... near 200,000 are gay. Yet the research branch of gov, NIH, has spent the bulk of appropriated research funding for HCV on HIV then reported to congress as HCV specific disease funding.

The greater part of NIH-HCV investments; do not advance research for prevention, vaccines, treatments, or cures for the majority afflicted.  The data is evident in the charts and documentation compiled from the NIH’s Research Online Reporting Tool (RePORT).  http://hcvets.com/NIH/FormalComplaint/Petition.asp

A compelling example- NIH awarded only one research project, totaling $156,104, for Cirrhosis in 2009.  Despite the fact, one in 2 men and 1 in 3 women will develop cirrhosis and suffer from many diseases and conditions that could diminish with research investments.

And, what about diabetes.... most, if not all of us, have some form of sugar imbalance. It's taken years to get researchers to look at the affects of sugar on SVR because the powers that be have other plans. So, to support legislation that does nothing for HCV patients or directs most resources to another agenda is insane.

I see the glass half empty with these folks, because the patients will barely benefit from any of the funding if the current legislation passes. Sad part, most will think gov is doing something for us and NVHR will continue to sell us out if the bill passes, and on a global level.


T
Avatar universal
Ok, I get it. I'll clean this up a little bit. The misinformation in this thread is appalling. NHVR does not spring out of NHCAC. NHCAC is a hepatitis C only organization that helps to capacity build for it's members. NVHR works in the broader sense in that it represents all viral hepatitis. As for NVHR not being made up of people who are infected or affected by hepatitis, that is ludicrous. Check your facts before you hit send. Ms Saly is SVR, Ms Sandt's brother is SVR, Mr. Simon's wife is stage 4, Mr Burkett and Mr. Ninburg are also SVR. Your statements are just not true.

Who but the pharma companies are going to create the treatments that save your lives? Of course we are upset as patients about the costs of these drugs. It is what it is. We cannot change that. It's expensive to develop the drugs. Have you ever visited a research lab?  Try it some time and then go out and help some of the advocates. You might like it.

So please spare the rest of us your divisevness and rhetoric. Check your facts. AND, think about saying thank you to those advocates who work their a**es off for you for no compensation.

Avatar universal
Thank you.  I have only a small idea of how hard you work.  Thank you for your hard work and thank you for your post.  The information is appreciated.

jd
Avatar universal
I want to thank you too.
Mike
87972 tn?1322664839
Thanks, Suzie—

I read both this as well as the previous post; both were/are on task and appropriate, in my view. I too would like to thank you for your work and appreciate your input—

Bill
87972 tn?1322664839
And you delivered the info without resorting to rant :o)...
Avatar universal
Thanks for your support guys. I'm not looking for thanks. But I love to hear it when someone like my hubby or some of the other advocates who get nothing but personal satisfaction for their time and work, are thanked. So I will pass your thanks on to them. They are the ones who really deserve it.
568322 tn?1370169040
How about Chris Taylor from the National Alliance of State & Territorial AIDS Directors? He's in the Steering Committee at NVHR.   Does he have HCV?  Because we have asked him multiple times and he hasn't answered us.

The reason I ask is because he's representing all Hep C patients in the US as a Board Member for the World Hepatitis Alliance, which is in violation of their guidelines which state that to be a full voting member or be chosen for the Board he must be a Hepatitis patient (which is also what Mr Gore said) and the organization must have chronic viral hepatitis as their primary area of activity.

You don't know whether he has hepatitis?  That would mean that you held an election without knowing whether he met the requirements.  Because Mr Gore said you set up the election that got Chris Taylor chosen as Board Member.  

BTW, can you tell me which organizations voted?

Co
P.S.  Before anybody asks ME whether I have Hepatitis.....No, I don't.  But my mother died of end stage liver disease after being on a ventilator for two weeks and one of my brothers has Hepatitis C....and my father has liver/kidney cancer.
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