Hepatitis B Community
Raise the voice
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This forum is an un-mediated, patient-to-patient forum for questions and support regarding Hepatitis B. Topics in this forum include but are not limited to, Causes, Diagnosis, Family and Relationships, Living With Hepatitis B, Research Updates, Treatment, Success Stories, Support, Symptoms.

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Raise the voice


we must count the years after the hep virus was discovered in 1967 and vaccine was in 1969 by Dr. Blumberg. what actually is done in hep b from then, almost nothing. so called major breakthroughs  interferron was borrowed from hep c, tenofovir borrowed from from hiv community. actually no  fundamental effort was done to undue cronocity of hep b.

46 years oh my god, think about it, don't you think if honest efforts were made did we need 46 years to reach where we are? no we didnt need and even today we are not sure weather it will need 5y 10 y 20 y or 30 y or never. no grand initiative from pharma or government or any fundamental research institutes. with so much breakthroughs in physics and technology they need 46 years to understand a dirty virus and still struggling. see the changes in world of technology over this 46 year period and you will find yourself angry with biologists, pharma and government. if they are honest there can be no hurdle in clearing after all it is just a chemical just a virus and immune system has enough power to kill this just a trigger is needed.
poll your view about the progress the treatment of hep b has made over last 46 years.
0%
 (0) 
extra ordinary progress
4%
 (1) 
satisfactory progress
9%
 (2) 
poor progress
85%
 (18) 
shame full progress
21 Members voted
23 Comments Post a Comment
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Avatar_m_tn
I do not want to make any personal attacks but just curious if you or others members like veterneB are doing anything on their part? You may want to consider donating some small amount to Hepatitis B foundation. I know that not all the donation they receive goes for research, some of that goes for increasing awareness, nevertheless it's good cause and eventually it may result in more people aware of their disease and start contributing, hence more funds for research. Any small amount should help.
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Avatar_m_tn
please donot suggest every cronic (chronic) to become a doctor. we are living in a society some way we give something to society and something we want from society. and cure is what we want from society or govermnent.
there is no scarcity of money in hepb research. money is not the only thing what is needed but motivation, moral values and thrust in hep b researchers is needed. and remember one thing you can't get/make everything just by MONEY.  if so, most of us could pay even for a very costly cure but it does not mean they will get cure in shops.
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Avatar_m_tn
see this another example of money matters.
At a recent national medical meeting of liver specialists, Dr. Mark Sulkowski of Johns Hopkins University Medical Center described a Phase II research protocol using a combination of two new oral medications, daclatasvir and sofosbuvir. This medication combination has almost no side effects.

The gist of Dr. Sulkowski’s presentation is this: After a mere 12 weeks of treatment with this new regimen, the “cure” (SVR) rate for hepatitis C was an astonishing 93 percent.
Hepatitis C patients have been waiting for a treatment regimen like daclatasvir and sofosbuvir for decades. It’s a true rarity in medicine — an honest-to-goodness game-changer, a phenomenally effective regimen for a serious, life-threatening disease that is also safe and well-tolerated.

The only problem? The two drugs are owned by different companies — daclatasvir is a Bristol-Myers-Squibb drug, while sofosbuvir is made by Gilead Sciences.

For reasons that are almost certainly financial in nature, Gilead has refused to do further work on this drug combination with Bristol-Myers Squibb, so there will be no further study of the regimen. With no Phase III trials, that means that the daclatasvir/sofosbuvir combination regimen will likely not be approved for use by the FDA.
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Avatar_m_tn
you must know awareness only means vaccinating new people and better vaccine response reaserch(currently 90 %), so one day in future  it will be automatically irradicated, every body in future will be immune, that is why they are relaxed and waited for 46 years, hoping that by vaccination hep b will be automatically cleared from humans in next 50 years, so need to work hard to find a cure. and you must konw progress and research in hep c,why? beause there is no vaccine.

i dont know about other members but  best thing members like you can do is contribute to motivate people for vaccination in Hep day, seminars etc. and stop thinking about curing yourself.
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Avatar_m_tn
absolutely against donating, most of these organizations are just frauds (especially cancer and hiv) and never help in development...i trust only if they make claims with money back guartee if the claim doesn not come true
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Avatar_m_tn
you are right stef on donation issue.
there are some who dont undersand the way the things were moved and the way they are going on. this vaccine is true enemy of ours from getting cure. the world is waiting to get rid of hep b by more and more vaccination not by treatment.
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Avatar_m_tn
What a lot of bull excrement. Without the vaccine, hbvers are reluctant to get married and have a family.  There are excellent treatments available NOW for hbvers, they are not a cure but they do enable most of us to live a normal life span.
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Avatar_m_tn
yes you are true, this is one side of coin social side, i m putting light on other side pharma and government side. both are equally true.
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Avatar_m_tn
voters are requested to share their views with voting. so we can learn what our mass is thinking. some's english may  not be that good but its fine.express your views no matter in fabour or not. its not only about mine or stephenCastlecrag's views. its about mass's view what matters for us.
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Avatar_m_tn
i know it is too early to call the sequential treatment a fully cure but keep in mind that if correctly done...3-6years of tdf or etv, the peg add on has 90% response (maybe higher) and 50% hbv clearance (maybe higher on tdf and etv), plus you can have pegintf more times in a decade, so i definitely think we have the cure, it is just slow and need expert doctors

what drug makers are doing is just slow the hbsag quant availability in the most corrupted countries like US and UK and keeping most doctors away from prescribing pegintf combos (which have always been the norm for hcv)...so it is just a matter of time for correct cure of hbv, no need of big announcements or complains, we just need to act smart and use tdf and peg add on correclty
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Avatar_m_tn
daclatasvir and sofosbuvir?  Interesting.  Not much study for TNF, ETV and PEG.  Steff showed us TNF and ETV combo are safe.  I am sure PEG add on is also safe.  PEG is just an immune stimulant.    
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Avatar_m_tn
poll your view about the progress the treatment of hep b has made over last 46 years.

The poll results are as under (rounded off to decade) :

80% shame full progress.
10% poor progress.
10% satisfactory progress.
0% extra ordinary progress.
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Avatar_m_tn
That's a very close minded view. Having a vaccine is in my opinion an extra ordinary progress. You guys really need to stop thinking like you will live forever of something. Its not worlds fault that somebody was dumb enough not to vaccinate us in the first place or the country was too cheap to do it.
I'd call HCV treatment a failure cause those damn companies make millions of dollars just because there is no vaccine unlike for HBV, where as I already mentioned on the forum its a matter of 2-3 generations until world forgets about this virus. Imagine that within that time there won't even be a member of your family alive to remember you and your hep b problem.
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Avatar_m_tn
they discovered vaccine in just 2 years and it seems only recently they took treatment research little seriously.
no way the progress is extra ordinary, no way.
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Avatar_m_tn
you are thinking about future generation, plz  think about the people from last generations and those who are still sufferring in these 46 years.  what about those children and adults who donot responde to vaccine. what do u think because they would be in minority (90% vS 10%), they should be left to live as hell or discarded. dear, vaccine is not the solution, only solution is "fundamental  research for cure" and we need it and we deserve it, no matter we would be remembered or not by the future human race. your futuristic dream looks  good only when futuristic astro-physicist CARL SAGAN says it, not us. please live in present.

some how we have to create a "hep b wave"  in the world for searching cure, we must unitely put our voice with slogan "we need it and we deserve it".
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Avatar_m_tn
One more thing, by forums like ours there sholud be a clear message given  to these drug makers/drug researcher that now hep b patients are not illeterate, they understand the desease and treatment and can argue their doctors for better treatments and are not blind follower of corrupt doctors.
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Avatar_m_tn
Well if Gilead now contracting marketing firms for patients recruitment for clinical trials. We can just stop hopping right there that anybody is listening to us.

This thing is all about money. But time yes has proven that taking antivirals is worthless, and people are ware of it. So that is what is making big pharma to roll out something more affective.

So forums like this one, yes open the eyes to new patients, about HBV industry. Same thing is with HIV, cancer and other chronic diseases. Cures are being delayed because treating people forever with useless drugs is very profitable, for everybody involved.
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Avatar_m_tn
With what they know today about human genetics. Things that major military agencies are involved with molecular biology, taking out HBV should be a simple thing. That research that is coming out from Germany, about transforming a harmless virus so it can deactivate things like HBV and HIV is what they known for a while..

So there is plenty of what is known how to treat and cure chronic HBV. But if you compare with what and how they currently treat us it is clear, that we get a rotten deal. Eugenics for profit, that is what this is. Playing off that the general public is so dum that they don't know better.

As someone said here UFC fighter with chronic HBV was cured. With what? Maybe yes with everything we have talked here about.

And I am sure if one can put $100,000 - 300,000 on HBV treatment some private clinic in Europe or Israel can help.
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Avatar_m_tn
there is a lot known to military from cells to virus but they consider that as strategically important knowledge. they donot  use it for constructive purpose it is  only for destruction. if that knowledge and money is put for constructive purposes the world would be much better place for us.
that is difficult to do for others than politics/politician. only politics has that much power to divert things from  weapons to human purposes.
it was said that Putin was worried about hep b burden in russia and had shown some interest in myercludex b russian trial. may be that will help us. if usa is not taking lead, russia must come forward for giving hep b cure for rest of world.
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Avatar_m_tn
if you can, always use generics of antivirals (because they can't be consider as state of art research or solution for hep b, they were actually researched for hiv) and always use original (inventor) brand of medicines where you really want to award/appreciate the research efforts put by the inventor company even if you find it little bit costlier.

selecting our brand of medicine is something which makes you the market driver. you have to tell pharma industries that what do you as a customer wants/requires from them. and by awarding your purchase for a decent  research based company, you can convey your message "do new research and search better options" to other pharma industry.

originally concept of patent was deviced for this purpose but now it has become a corruption tool of FDA and other agencies. now the time has come to take that power in your own hand. purchase orginal brand of medicine only if you think that they had done real research for that drug to put in market no matter little costlier.  so keep in mind during drug purchasing "choose wisely to convey your message to pharma".
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Avatar_m_tn
we have to fight for cure like our ancestors faught for their freedom (no matter from which country u belong to, in some sense almost all the countries in past fought for their freedom.). The story of our generation is not different from them, now the enemy is different, now enemy is a virus. we have to fight against it to get our freedom from hep b. it sholud be like our freedom fight against hepatitis.    "we want freedom".

it was a long suffering and slavery of hep b, now humanity wants freedom from hepatitis and other dirty viruses. raise your voice locally and globally where ever u can, no matter it would be listen or not, because this is very very important thing to do.  do u know most of the people do not know of their hep b desease , only 5% get diagnosed and aware of their of their hep b status, this all is to make u think/fight  than only keep worrying and tensed.
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Avatar_m_tn
Well we have to have a dialog with Replicor.

Why they don't come here ever and speak to us?! They have a cure, with interferon can cure everybody.. This Year!
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Avatar_m_tn
it seems to me that big pharmas are somehow lobbying to stop them and somehow seems successful in mal intention. but dont worry truth always wins.
but now concentrate on myercludex b trial. hopefully something good for us in near future.with peg and nucs myercludex can do wonders.
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