Aa
hi all
ok ive got a couple of questions to ask just to see what peoples views are?
1. how many people here think interferon+riba are the answer to hepc?
2. how many people in the developed world have hep c?
3. how many think the fda do a good job ensuring that new therapies are safe and get to market as quickly as possible?
and lastly what do you think will eventually cure hep c for good?
1. how many people here think interferon+riba are the answer to hepc?
2. how many people in the developed world have hep c?
3. how many think the fda do a good job ensuring that new therapies are safe and get to market as quickly as possible?
and lastly what do you think will eventually cure hep c for good?
dear apache, i do unfortunitly understand occult hep c only to well i have it.
and im not saying that combo treatment all bad im just saying that it looks very likely that that something much safer is just on the horizan, and a lilltle push or a nudge from even 1% of us heppers standing shoulder to shoulder might help it along.
its seems to me that new therapies unless linked to crrent standard of care from day one get less publicity and less inerest from the medical gods. take one i mentioned chronvac c, its mission statement is firstly to possible clear the virus altogether on its own then if this is not possible to maybe suppliment current standard of care.
where as from day one vx 950 was always going to be an add on to s.o.c. because as we ve already seen from simular meds used to treat hiv the virus will eventually breakthrough amd find a way round, thus happily replicating unhindered once again.
ill give u another example, im sure you ve heard of narningin the substance in grapefruit which blocks the cholesterol which transports hcv from cell to cell from being made? well this stuff would be dirt cheap as it just comes from grapefriut. but as of yet ive seen no drug company racing to develop an injectable form of it to help heppers, an injectable form is needed because its extremely difficult for the human digestive tract to absorb narningin through to the blood stream.
now i agree the f.d.a. has not got an easy job, but as hcv is according to the w.h.o. one of the biggest public health risks today sure a sub fda commitee with responsibility only for hep c would help? this would help speed the process of new drug testing and so on . now you might say well what makes hcv so special that it gets a special branch of the f.d.a. all for its self?
well a few things i would say
1. it poses such a huge and current health risk
2. it unlike many viruses has shown real waekness to medical intervention.
3. and if reason 1 and 2 just above are true then surely an accelerated and combined push towards more research and more openess about the problem would yield results faster, thus relieving the f.d.a. of one huge burden of work and freeing them somewhat to looking at other diseases?
now we have an estimate of 200 million infected with hcv, so if 1% of these people grouped together and say donated $1 a week to the cause, what could they achieve?
possibly a huge lobby to further more research?
coud they fund more research into therapies that might not be financially viable for drug companies, which remember are businesses and wont develop a loss making drug?
could they fund a training programme to train g.p.s to bring them up to speed on this disease so that they are better equiped to treat suffers on a local level?
and could they help fund treatment and prevention in countries with huge hcv problems but little money to combat it?
look i dont know everything about hep c, i dont know if im correct in everything ive said here.
all im saying is i feel a lot better if we the the people suffering with this thing were taking more of a role in our own destiny. thats all does anyone agree?
thanx everyone who gives some of their time to reading this.
i hope some of those who read this see what im trying to say, even though i may not have said it very well.
i truely am not anti f.d.a. or anti drug company, i just think a big gang of us could help them and if needs be keep an eye on em too.
i myself am not a doctor but i do have a medical back ground and truely believe from current and new therapies that this nasty little beasties days are numbered, and that the new treatments will not be as possibly detrimental to the patients health.
ok ive rambled enough for now, again thanx u all for taking the time to read this.
viva la revolution.....................
and im not saying that combo treatment all bad im just saying that it looks very likely that that something much safer is just on the horizan, and a lilltle push or a nudge from even 1% of us heppers standing shoulder to shoulder might help it along.
its seems to me that new therapies unless linked to crrent standard of care from day one get less publicity and less inerest from the medical gods. take one i mentioned chronvac c, its mission statement is firstly to possible clear the virus altogether on its own then if this is not possible to maybe suppliment current standard of care.
where as from day one vx 950 was always going to be an add on to s.o.c. because as we ve already seen from simular meds used to treat hiv the virus will eventually breakthrough amd find a way round, thus happily replicating unhindered once again.
ill give u another example, im sure you ve heard of narningin the substance in grapefruit which blocks the cholesterol which transports hcv from cell to cell from being made? well this stuff would be dirt cheap as it just comes from grapefriut. but as of yet ive seen no drug company racing to develop an injectable form of it to help heppers, an injectable form is needed because its extremely difficult for the human digestive tract to absorb narningin through to the blood stream.
now i agree the f.d.a. has not got an easy job, but as hcv is according to the w.h.o. one of the biggest public health risks today sure a sub fda commitee with responsibility only for hep c would help? this would help speed the process of new drug testing and so on . now you might say well what makes hcv so special that it gets a special branch of the f.d.a. all for its self?
well a few things i would say
1. it poses such a huge and current health risk
2. it unlike many viruses has shown real waekness to medical intervention.
3. and if reason 1 and 2 just above are true then surely an accelerated and combined push towards more research and more openess about the problem would yield results faster, thus relieving the f.d.a. of one huge burden of work and freeing them somewhat to looking at other diseases?
now we have an estimate of 200 million infected with hcv, so if 1% of these people grouped together and say donated $1 a week to the cause, what could they achieve?
possibly a huge lobby to further more research?
coud they fund more research into therapies that might not be financially viable for drug companies, which remember are businesses and wont develop a loss making drug?
could they fund a training programme to train g.p.s to bring them up to speed on this disease so that they are better equiped to treat suffers on a local level?
and could they help fund treatment and prevention in countries with huge hcv problems but little money to combat it?
look i dont know everything about hep c, i dont know if im correct in everything ive said here.
all im saying is i feel a lot better if we the the people suffering with this thing were taking more of a role in our own destiny. thats all does anyone agree?
thanx everyone who gives some of their time to reading this.
i hope some of those who read this see what im trying to say, even though i may not have said it very well.
i truely am not anti f.d.a. or anti drug company, i just think a big gang of us could help them and if needs be keep an eye on em too.
i myself am not a doctor but i do have a medical back ground and truely believe from current and new therapies that this nasty little beasties days are numbered, and that the new treatments will not be as possibly detrimental to the patients health.
ok ive rambled enough for now, again thanx u all for taking the time to read this.
viva la revolution.....................
1) Seems to have worked for me.
2) 200 million around the world
3) I think the FDA dose pretty good, all things considered.
Remember this is a large government agency trying to keep the public safe from the hundreds/thousands of new drugs being developed every year.
While also trying to make available a safe cure for many diseases that have plagued human kind for millennia. Are they perfect...no.
IMHO not an easy job. Maybe one of the most complicated in government.
Think you need to do more research on 'occult HCV' because you sure Do Not understand it from what you said.
apache
2) 200 million around the world
3) I think the FDA dose pretty good, all things considered.
Remember this is a large government agency trying to keep the public safe from the hundreds/thousands of new drugs being developed every year.
While also trying to make available a safe cure for many diseases that have plagued human kind for millennia. Are they perfect...no.
IMHO not an easy job. Maybe one of the most complicated in government.
Think you need to do more research on 'occult HCV' because you sure Do Not understand it from what you said.
apache
thanx for the replies lads.
ok firstly i agree that riba and interferon are at the moment all we have, but only if things are really bad, due to the side effects, remember interfrons safety is very very very qustionable. nedd i remind you of the possible sides? also new research is findinding that combo treatment may ony clear the virus from the blood not the liver. leaving the patient with occult hep c a less quickly progressing form of the disease. so we may have to face facts that combo only kills the virus in the blood. a liver biopsy and periferal blood cell test are needed to test for full viral clearance.
but again having said all this yes you are right its all we have at the moment, so its better than nothing.
new drugs being tested such as vx 950 may shorten treatment time which is great but i still havent seen any information on the effect of any of these inhibitors on viral levels in the liver. which makes me a little edgy bout these new wonder drugs, but again if it ups the blood clearance rates and shortens treatment time then it cant be bad.
now there are other therapies in testing, which show great promise but for some reason aint getting the backing (money wise) and publicity they deserve. for instance chronvac c, anyone heard of it? im sure u have its a theraputic vaccine, in its first trial combined with an electro delivery system given 1 im jab a month for 4 months it dropped viral loads by up to 97.7%. now admittedly the test subjects (only 12 in all) had very low viral loads, 8000000 or less. but there is further post treatment test ongoing to see the effect of the vaccine on the viral load in the liver. now as this therapy stimulates your own immune system to fight the virus its very possible that its fighting it in both your blood and your liver as your own anti bodies should find it easier to attack their target anywhere in the body. and guess what no side reported as of yet. other new possibles are beautivimax im sure if this is the right spelling. but this one assists your own immune system to kill the virus by turning infected cells inside out thus flagging them for destruction by the immune system, this one seems to work for a lot of viruses including in theory at least hiv. it also works in a simular way on cancer cells. it was tested on guinea pigs infected with lassa fever, which if your a guinea pig is curtains and 75% survived as opposed to 25% in control arm. but as of yet i havent heard of anyone suggesting a trial of of this and chronvac together as it seems to me that these 2 therapies might just well compliment each other very well? its just one idea, so dont attack me, there are other therapies that combined could make a big difference but very little seems to be happening. now i dont know if this is because of a lack of interest because these drugs havent been straight away tied into the current combo treatment as an add on or if its just a lack of imagination on the part of the super humans who are supposed to be curing us?
the point is we, as in us as a group and lets face it we are a huge group i dont know how many heppers there are world wide but the w.h.o. is calling hep c the silent epidemic so there are millions of us, well these are the questions we should be asking. but again as seperate individuals our voices are not going to be heard and if they are they wot be listened to.
now as for the f.d.a. im sure about them, yeah im sure the ideal upon which it was set up was a good one, but how many big wigs in the f.d.a. at one time or another worked for big drug companies? and if the number is a lot surely this is some sort of conflict of interests. now you are more than likely thinking that my last sentance doesnt make sense, cos if the f.d.a. are in cahoots with drug companies then surely they would be fast tracking unsafe drugs left right and centre? yeah well maybe thats true but the f.d.a. slowing things up also allows drug compamies to raise massive capitol and share income everytime a company releases some vaguely positive information about a drug that may but more than likely wont make it to market. so it can work both ways.
now the w.h.o. is realyy worried about hep c, they estimate that heppers way out number hiv+ patients by a large margin at least in the developed world today. so if this is true i would say that hep c is a major health concern or an exceptional health risk, again if this is true i would expect some leadership or at least a review of protacols from the f.d.a. to try and speed up the resolution of this virus. but nothing they stick to the same protocols for everything.
now i asked what we think might eventually cure hep c for good. well i think i know its not vx 950 or the f.d.a. its money and a massive lobby group. this is one thing we heppers have if we band together, wouldnt you agree?
ok firstly i agree that riba and interferon are at the moment all we have, but only if things are really bad, due to the side effects, remember interfrons safety is very very very qustionable. nedd i remind you of the possible sides? also new research is findinding that combo treatment may ony clear the virus from the blood not the liver. leaving the patient with occult hep c a less quickly progressing form of the disease. so we may have to face facts that combo only kills the virus in the blood. a liver biopsy and periferal blood cell test are needed to test for full viral clearance.
but again having said all this yes you are right its all we have at the moment, so its better than nothing.
new drugs being tested such as vx 950 may shorten treatment time which is great but i still havent seen any information on the effect of any of these inhibitors on viral levels in the liver. which makes me a little edgy bout these new wonder drugs, but again if it ups the blood clearance rates and shortens treatment time then it cant be bad.
now there are other therapies in testing, which show great promise but for some reason aint getting the backing (money wise) and publicity they deserve. for instance chronvac c, anyone heard of it? im sure u have its a theraputic vaccine, in its first trial combined with an electro delivery system given 1 im jab a month for 4 months it dropped viral loads by up to 97.7%. now admittedly the test subjects (only 12 in all) had very low viral loads, 8000000 or less. but there is further post treatment test ongoing to see the effect of the vaccine on the viral load in the liver. now as this therapy stimulates your own immune system to fight the virus its very possible that its fighting it in both your blood and your liver as your own anti bodies should find it easier to attack their target anywhere in the body. and guess what no side reported as of yet. other new possibles are beautivimax im sure if this is the right spelling. but this one assists your own immune system to kill the virus by turning infected cells inside out thus flagging them for destruction by the immune system, this one seems to work for a lot of viruses including in theory at least hiv. it also works in a simular way on cancer cells. it was tested on guinea pigs infected with lassa fever, which if your a guinea pig is curtains and 75% survived as opposed to 25% in control arm. but as of yet i havent heard of anyone suggesting a trial of of this and chronvac together as it seems to me that these 2 therapies might just well compliment each other very well? its just one idea, so dont attack me, there are other therapies that combined could make a big difference but very little seems to be happening. now i dont know if this is because of a lack of interest because these drugs havent been straight away tied into the current combo treatment as an add on or if its just a lack of imagination on the part of the super humans who are supposed to be curing us?
the point is we, as in us as a group and lets face it we are a huge group i dont know how many heppers there are world wide but the w.h.o. is calling hep c the silent epidemic so there are millions of us, well these are the questions we should be asking. but again as seperate individuals our voices are not going to be heard and if they are they wot be listened to.
now as for the f.d.a. im sure about them, yeah im sure the ideal upon which it was set up was a good one, but how many big wigs in the f.d.a. at one time or another worked for big drug companies? and if the number is a lot surely this is some sort of conflict of interests. now you are more than likely thinking that my last sentance doesnt make sense, cos if the f.d.a. are in cahoots with drug companies then surely they would be fast tracking unsafe drugs left right and centre? yeah well maybe thats true but the f.d.a. slowing things up also allows drug compamies to raise massive capitol and share income everytime a company releases some vaguely positive information about a drug that may but more than likely wont make it to market. so it can work both ways.
now the w.h.o. is realyy worried about hep c, they estimate that heppers way out number hiv+ patients by a large margin at least in the developed world today. so if this is true i would say that hep c is a major health concern or an exceptional health risk, again if this is true i would expect some leadership or at least a review of protacols from the f.d.a. to try and speed up the resolution of this virus. but nothing they stick to the same protocols for everything.
now i asked what we think might eventually cure hep c for good. well i think i know its not vx 950 or the f.d.a. its money and a massive lobby group. this is one thing we heppers have if we band together, wouldnt you agree?
1)
In a lot of cases I think it's the answer. Even is the chance of successful cure is not 100% (in my case, being genotype 1 and having HIV it's only 30%), the alternative is liver failure and a liver transplant. This justifies a difficult treatement, even with limited chance of success.
2)
I don't know. I can tell you that of the people with HIV in the Netherlands, 20% also have HCV.
3)
There is a tension between "new therapies are safe" and "get to market as quickly as possible". This is a trade off. Given the fact that liver cirrhosis is a slow process, I expect an organisation likde the FDA to prefer safety over speed. But to be honest, I don't have a real opinion on how well the FDA does its job.
What will cure Hep C for good? A vaccin, of course.
In a lot of cases I think it's the answer. Even is the chance of successful cure is not 100% (in my case, being genotype 1 and having HIV it's only 30%), the alternative is liver failure and a liver transplant. This justifies a difficult treatement, even with limited chance of success.
2)
I don't know. I can tell you that of the people with HIV in the Netherlands, 20% also have HCV.
3)
There is a tension between "new therapies are safe" and "get to market as quickly as possible". This is a trade off. Given the fact that liver cirrhosis is a slow process, I expect an organisation likde the FDA to prefer safety over speed. But to be honest, I don't have a real opinion on how well the FDA does its job.
What will cure Hep C for good? A vaccin, of course.
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