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A call to USA doctors to do trials on Myrcludex-B, REP9AC
I guess it is more of a question to the US research institutions and doctors from most of us here. As to why you are not doing or trying anything new for patients like us?
Why Myrcludex-B, and REP9AC are being tried in other countries? What happened with America leading the way? And don't tell us it is about the money or lack of knowledge from you folks! Because it is not, I have seen first hand the facilities some of your work in. Especially the virologists. And I have talked with some smart people, that get their work published, that are aware of the truth. In fact they know it.
Some of us for years have been on antivirals with very little results. Suppressing viral replication yes is a good thing. But yet these meds don't completely stop turn over of the virus in the lover. And don't stop the progression of liver disease. So it means these meds alone are not good enough. Rescuing the immune system is just as important as suppressing the virus. And this part is greatly overlooked in the US I suspect again because of the insurance factor that want to pay for one drug but not both :)
Most of you folks continue to do slow clinical trials just on ETV, or Tenofovir when there are other more effective therapy options available? Why do the drug and insurance companies tell you what to do and what to give us, and how to treat us, and with what? Everyone is talking about fixing health care in America - make it about helping people not about making money as the main goal. And it is just about time to do something. Especially with the virus such as this, that can be treated. And I am not talking about the long term viral suppression I am talking about seroconversion to anti-HbsAG..
This is what us patients want to try Myrcludex-B, and REP9AC. You can recruit volunteers on these forums in great numbers. Places like MAYO clinic you can do this and make it happen. Most of us will even pay for the drug and your time, you get to keep all the glory. That is what real research is all about, not giving us drugs that are on the way out in HIV treatments. Antivirals alone don't work very well and you know it.
Lets try to make this happen doctors! This is very doable. This will save lives, the medicines are here. Ironing out the therapy course for optimal results can be done on the fly as you work and monitor patients.
The old ways going through all the bureaucratic steps to bing medications to patients 10 years from now that can safe lives today just have to go. People with chronic HepB don't have 10 years when every year being infected our chance for HCC goes up. Some of us really don't care if we die trying to beat this virus. Because living with HBV is not really living, heaving no social life, being discriminated by greedy insurance companies that really do commit crimes legally with severely sick people by denying medical care to the needy. Some of us have walked all this road of frustration and tears with our grave disease. So we don't care if we die in the battle. It is for the better of humanity.
We need your help docs! All of this is very doable today getting enough people to inlist to try these drugs and to try them with combination with other available meds. And the big pharma with all their lobbyist in the FDA and all that won't be able to stop you or us the patients from getting the cure to so many people that need it. The web is a very powerful tool these days, where little guys can get their voices heard.
Bottom line there needs something to be done! Fighting a war against HBV is not done in large conference rooms and setting up foundations that really don't do anything. It is about doing something in your office, or University facility you work at and trying out new medications and treatment approaches. Even with the drugs we have now.. Not the drug companies should set up clinical trials and run them, but you the doctors.
In my situation I have difficulties in Southern California (in UCLA per say) finding doctors that are willing to do Pegasys+ Antiviral. Some people look at me like I am asking to be sent to Mars. "We don't have to do this" I am told.. Or I am told that there is no research data that supports it will be beneficial for me. So I am supposed to take antiviral and forget about it. That is the attitude I have experienced. Private practice doctors I am not even speaking about those guys are clowns with what they know about HBV.
Same thing goes for USCD and UCI more hype then real research I have experienced. And you guys are in the top 10 or 20 hospitals in the country. And the best you can do is Entecavir or Tenefovir for us? Basically giving us meds that are on the way out in HIV treatment. And this happens in the US, a country that most other nations look for solutions..
Myrcludex-B, is being tried in Russia.. REP9AC in Asia. And I hope they all succeed so we can fly there and get treated. But Why not in the USA nobody is **** human trials on these meds? In fact they have already tried them on humans and people tolerate them quite well.
So for me as patient it is very interesting to get some feedback from American doctors on here ID and Hepatologists that come to this forum as to what you think. And what we can all do.
Why Myrcludex-B, and REP9AC are being tried in other countries? What happened with America leading the way? And don't tell us it is about the money or lack of knowledge from you folks! Because it is not, I have seen first hand the facilities some of your work in. Especially the virologists. And I have talked with some smart people, that get their work published, that are aware of the truth. In fact they know it.
Some of us for years have been on antivirals with very little results. Suppressing viral replication yes is a good thing. But yet these meds don't completely stop turn over of the virus in the lover. And don't stop the progression of liver disease. So it means these meds alone are not good enough. Rescuing the immune system is just as important as suppressing the virus. And this part is greatly overlooked in the US I suspect again because of the insurance factor that want to pay for one drug but not both :)
Most of you folks continue to do slow clinical trials just on ETV, or Tenofovir when there are other more effective therapy options available? Why do the drug and insurance companies tell you what to do and what to give us, and how to treat us, and with what? Everyone is talking about fixing health care in America - make it about helping people not about making money as the main goal. And it is just about time to do something. Especially with the virus such as this, that can be treated. And I am not talking about the long term viral suppression I am talking about seroconversion to anti-HbsAG..
This is what us patients want to try Myrcludex-B, and REP9AC. You can recruit volunteers on these forums in great numbers. Places like MAYO clinic you can do this and make it happen. Most of us will even pay for the drug and your time, you get to keep all the glory. That is what real research is all about, not giving us drugs that are on the way out in HIV treatments. Antivirals alone don't work very well and you know it.
Lets try to make this happen doctors! This is very doable. This will save lives, the medicines are here. Ironing out the therapy course for optimal results can be done on the fly as you work and monitor patients.
The old ways going through all the bureaucratic steps to bing medications to patients 10 years from now that can safe lives today just have to go. People with chronic HepB don't have 10 years when every year being infected our chance for HCC goes up. Some of us really don't care if we die trying to beat this virus. Because living with HBV is not really living, heaving no social life, being discriminated by greedy insurance companies that really do commit crimes legally with severely sick people by denying medical care to the needy. Some of us have walked all this road of frustration and tears with our grave disease. So we don't care if we die in the battle. It is for the better of humanity.
We need your help docs! All of this is very doable today getting enough people to inlist to try these drugs and to try them with combination with other available meds. And the big pharma with all their lobbyist in the FDA and all that won't be able to stop you or us the patients from getting the cure to so many people that need it. The web is a very powerful tool these days, where little guys can get their voices heard.
Bottom line there needs something to be done! Fighting a war against HBV is not done in large conference rooms and setting up foundations that really don't do anything. It is about doing something in your office, or University facility you work at and trying out new medications and treatment approaches. Even with the drugs we have now.. Not the drug companies should set up clinical trials and run them, but you the doctors.
In my situation I have difficulties in Southern California (in UCLA per say) finding doctors that are willing to do Pegasys+ Antiviral. Some people look at me like I am asking to be sent to Mars. "We don't have to do this" I am told.. Or I am told that there is no research data that supports it will be beneficial for me. So I am supposed to take antiviral and forget about it. That is the attitude I have experienced. Private practice doctors I am not even speaking about those guys are clowns with what they know about HBV.
Same thing goes for USCD and UCI more hype then real research I have experienced. And you guys are in the top 10 or 20 hospitals in the country. And the best you can do is Entecavir or Tenefovir for us? Basically giving us meds that are on the way out in HIV treatment. And this happens in the US, a country that most other nations look for solutions..
Myrcludex-B, is being tried in Russia.. REP9AC in Asia. And I hope they all succeed so we can fly there and get treated. But Why not in the USA nobody is **** human trials on these meds? In fact they have already tried them on humans and people tolerate them quite well.
So for me as patient it is very interesting to get some feedback from American doctors on here ID and Hepatologists that come to this forum as to what you think. And what we can all do.
I have to admit, geography is my worst subject. I meant they are recruiting at:
United States, Missouri
Kansas City Gastroenterology and Hepatology Recruiting
Kansas City, Missouri, United States, 64131
Contact 816-361-0055
United States, Missouri
Kansas City Gastroenterology and Hepatology Recruiting
Kansas City, Missouri, United States, 64131
Contact 816-361-0055
This page shows they are recruiting for GS-9620 for Hep B in Kansas:
http://clinicaltrials.gov/ct2/show/NCT01590641
http://clinicaltrials.gov/ct2/show/NCT01590641
You are absolutely right about the big pharmas.
US has the contingent fee system that is why US has so many lawsuits.
US has the contingent fee system that is why US has so many lawsuits.
Hold your horses - I did not blame the doctors. I blame some of the big pharmas, especially those from America, that place stakeholders' interests above patients'. As for lawyers, well, there are greedy clients too, and a justice system based on adversary only.
Don't just blame the doctors!
Doctors hand are tied!
Blame those greedy LAWYERS!!
Every doctors being so afraid being sued! That is why doctors don't want to take any risks!
Doctors hand are tied!
Blame those greedy LAWYERS!!
Every doctors being so afraid being sued! That is why doctors don't want to take any risks!
There you go! A clinical trial of potential hep b cure held in US. Just have to make sure you are not in the control group.
I think that is the particular drug that my doctor is going to be recruiting for trials next month.
If you want to be in a clinical trial, watch the development of Gilead's GS-9620, a TLR7 agonist drug (one similar to what stef2011 is experimenting on). Phase 2 human trial might start soon, hopefully in US and on hep b.
From an outsider, the American medical system is broken. All your drug developments depend on the big pharnas and they only have the financial health of their shareholders in mind, not the patients'. I am a stranger to bashing the big pharmas, but after Gilead spent 11 billions (IN CASH) to buy a Hepatitic C drug, it drives home the enormous profits they made from HIV. Tenofovir was known to be effective against HBV for a long time, yet they sat on it for years.
I say keep Mycrludex B and REP9AC away from the American pharmas if we want to see affordable cures for HBV .
I say keep Mycrludex B and REP9AC away from the American pharmas if we want to see affordable cures for HBV .
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