New AIDS Guidelines - RE: HCV treatments 
Author Message
 New AIDS Guidelines - RE: HCV treatments

Hi everyone,

I read a report just out today from the National Institute of Allergy
and Infections Diseases (you can read it yourself on CNN's web page).
This ties in directly with a topic thread I have been barking about
lately having to do with treatment strategies.

If I can paraphrase their report, they are basically accepting use of
antiviral combination therapies to specifically reduce viral load. Three
antivirals (out of 11 total available now for AIDS) will be given to
patients and their viral load will be monitored every 3-4 months. If no
reduction in viral load is seen, one of the three {*filter*} will be changed.
If no reduction in that combo, another combo is tried until the virus
level measured is low or undetectable.

Problems for the new treatment strategy:
 1) Virus may become resistant to antivirals. This is similar to how
bacteria become resistant to antibiotics and can be ameliorated to some
extent by careful use of the {*filter*} (no missed pills).

2) Toxicity of the antivirals. Each of the eleven have different sides
and those probably vary with different people. Finding the right combo
for the individual is important because we are talking about permanent
maintainence for the rest of their lives or until a new cure arrives,
which ever comes first.

3) Non-response to therapy.

The main point here is that I think it is time to re-evaluate treatment
guidelines for HCV and bring them closer to what is being done with
AIDS. Currently, if we don't respond to INF or INF/Rib, we're basically
cooked.
Please notice that in this new report, they are not talking about a cure
for AIDS anywhere in these treatment strategies. These patients are NOT
cured, they are ALIVE. Uh, can we see a show of hands for how many
people with HCV will gladly accept THAT option. My hand is up.

I'm sorry, but a 25-50% cure rate with INF and INF/Rib don't cut the
mustard. People are being told to basically go home and die. Come on
now, what's up with that. This is not acceptable, and I say, not
necessary.

My humble recommendation for what its worth department: Let's get going
on research trials for antiviral combos and HCV. There have to be
obvious choices, I keep barking about Ribavirin and Amantadine, but
there must be others. I guarantee there are INF and INF/RIB
non-responders willing to sign on. I'll probably be there myself in a
couple months.

OK? OK!

Michael in LA



Tue, 07 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Mike, this is indeed a valid strategy and it's one that a growing
number of HCV clinicians are starting to look at. But there's another
strategy that's available right now and is just as intriguing. I know
of at least one clinician whose personal anecdotal experience with
patients -- and those of several colleagues  -- has convinced him that
if interferon alone is given long enough, a cure(!) is reasonable in
nearly everyone, regardless of initial viral load or genotype.

The key here is the length of time -- not "lots" or "lots for a short
time". Every person he treats goes on IFN three times a week, takes as
much as they can reasonably tolerate and goes on with life. When
qualitative PCR on plasma is negative (x2 - 2 months apart) -- however
long that takes -- he does a qualitative PCR on white cells.  When
this becomes negative (x2 - 2 months apart), he does a biopsy if the
patient is willing and does a PCR on that (a nested PCR that detects
700 copies/ml of serum or 10 copies per mg of tissue). If this is
negative then the INF is ended. He's done this with several dozen
people over the past 3 1/2 years or so and so far NO ONE has had a
recurrence by PCR or enzymes. What's more, most of the patients are 1a
or 1b.

Now, at first blush, you would think that pharmaco's -- especially
Schering Plough -- would love the ramifications of this promising
strategy, because it entails an increased use of interferon. But think
again. It would entail an initial increase, yes. But if the "cure"
rate is as promising as this clinician's research suggests, Schering
could forget about keeping millions of us heppers on the hook for the
rest of our lives, feeding us more and different new ingredients for
our daily "cocktail" -- and God knows what new and delightful sides.

I know this sounds a little paranoid regarding Schering Plough. But
then again, maybe not, eh? ...

Quote:

>Hi everyone,

>I read a report just out today from the National Institute of Allergy
>and Infections Diseases (you can read it yourself on CNN's web page).
>This ties in directly with a topic thread I have been barking about
>lately having to do with treatment strategies.

>If I can paraphrase their report, they are basically accepting use of
>antiviral combination therapies to specifically reduce viral load. Three
>antivirals (out of 11 total available now for AIDS) will be given to
>patients and their viral load will be monitored every 3-4 months. If no
>reduction in viral load is seen, one of the three {*filter*} will be changed.
>If no reduction in that combo, another combo is tried until the virus
>level measured is low or undetectable.

>Problems for the new treatment strategy:
> 1) Virus may become resistant to antivirals. This is similar to how
>bacteria become resistant to antibiotics and can be ameliorated to some
>extent by careful use of the {*filter*} (no missed pills).

>2) Toxicity of the antivirals. Each of the eleven have different sides
>and those probably vary with different people. Finding the right combo
>for the individual is important because we are talking about permanent
>maintainence for the rest of their lives or until a new cure arrives,
>which ever comes first.

>3) Non-response to therapy.

>The main point here is that I think it is time to re-evaluate treatment
>guidelines for HCV and bring them closer to what is being done with
>AIDS. Currently, if we don't respond to INF or INF/Rib, we're basically
>cooked.
>Please notice that in this new report, they are not talking about a cure
>for AIDS anywhere in these treatment strategies. These patients are NOT
>cured, they are ALIVE. Uh, can we see a show of hands for how many
>people with HCV will gladly accept THAT option. My hand is up.

>I'm sorry, but a 25-50% cure rate with INF and INF/Rib don't cut the
>mustard. People are being told to basically go home and die. Come on
>now, what's up with that. This is not acceptable, and I say, not
>necessary.

>My humble recommendation for what its worth department: Let's get going
>on research trials for antiviral combos and HCV. There have to be
>obvious choices, I keep barking about Ribavirin and Amantadine, but
>there must be others. I guarantee there are INF and INF/RIB
>non-responders willing to sign on. I'll probably be there myself in a
>couple months.

>OK? OK!

>Michael in LA



Tue, 07 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:
> I'm sorry, but a 25-50% cure rate with INF and INF/Rib don't cut the
> mustard. People are being told to basically go home and die. Come on
> now, what's up with that. This is not acceptable, and I say, not
> necessary.

I hear what you say, but can't totally agree.

For a start how many people like being guineapigs, particularly when there
are other options and incalculable side effects?
the odds of a good and productive life are pretty good even untreated, and
probably even exceed the statistical probabilities as you are now aware of
the problem and are giving your liver an easier time than those whom are a
part of those statistics.

Another stratagy, one I intend to adopt if my current INF treatement fails,
is to wait. That's right wait. Eat well, lower my iron levels as low as
possible, take the milk thistle, vitamins E and C and licorice. then wait
for RIBA/IFN to be approved. As well as this in the time it takes for this
combo to become available down here there will likely be other promising
treatments emerging to consider.



Wed, 08 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:

> Hi everyone,

> I read a report just out today from the National Institute of Allergy
> and Infections Diseases (you can read it yourself on CNN's web page).
> This ties in directly with a topic thread I have been barking about
> lately having to do with treatment strategies.

> If I can paraphrase snip......I'm in agreement Mike (chael). By the way, have you heard of "consensus"

interferon. It is brand new and is made by Amgen in the U.S. (I may be
able to get a phone Number). It would be a compassionate release since it
is so new. This INF is semi-synthetic and uses only certain portions of
the regular a-INF polypeptide thereby allowing larger doses with fewer
side effects. This comes from an earlier post I made to "?" that had just
been labled a nonresponder. There is a lot on the horizon and it seems to
depend on your healthcare provider as to how you are treated- US and
CANADA are also different.
Rick


Thu, 09 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:

>I'm sorry, but a 25-50% cure rate with INF and INF/Rib don't cut the
>mustard. People are being told to basically go home and die. Come on
>now, what's up with that. This is not acceptable, and I say, not
>necessary.

Great post!! I'd just like to comment that I feel we are being lied to
about the so-called "cure" rate. I don't believe that HCV is
eliminated. It becomes suppressed below the detectability of the PCR
to pick it up in many cases, but HCV, like HIV, is a TISSUE
disease--and they look for it in the {*filter*}. While this is a useful
tool to see to what extent the therapy is helping (or not) and, to the
extent that dropping viral load to low levels is clinically
beneficial, that's a measureof how good the treatment is. But IFN/Riba
just ain't good enough. We need both a better understanding of EXACTLY
how HCV causes fibrosis/liver damage or transforms cells so that we
can target both the virus AND do everything necessary to preserve
liver tissues and function. The most successful approach to HIV/AIDS
is similarly not just attacking the virus but also improving the host
immune response, dampening the hyperactivated aspects while
endeavoring to repair damaged tissues.

Quote:
>OK? OK!

Most definitely OK!! And the only reason that HIV has so many {*filter*} is
because many folks (myself included: I've had too many friends die of
AIDS) ACTted UP, raised hell and got attention and money. We must do
the same!

                Georeg M. Carter



Thu, 09 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Yo Stu,

I knew you were listening, thanks for giving me some feedback.

Quote:
>I know of at least one clinician whose personal anecdotal experience with
>patients -- and those of several colleagues  -- has convinced him that
>if interferon alone is given long enough, a cure(!) is reasonable in
>nearly everyone, regardless of initial viral load or genotype.

Wow. That's the first time I've heard that one. I had thought that long
term INF had been eliminated as being more efficacious than short term.
Another interesting feature of "your" strategy is that apparent
"non-responders" can become responders even years into therapy. Perhaps
non-responders are currently being misdiagnosed and are actually
"slow-responders" (a new catagory of sickies!).

Quote:
>He's done this with several dozen people over the past 3 1/2 years or so >>and so far NO ONE has had a recurrence by PCR or enzymes. What's more, >most of the patients are 1a or 1b.

Whoa. Amazing. Im looking forward to that paper. But this may not help a
lot of people who can't tolerate INF, (I'm thinking about JJ,III who
posted recently about being told to go home by the Doc.)  On the other
hand, perhaps they could dial it down to inperceptable sides. The AIDs
combo therapy has something like 320 different combinations of the 11
{*filter*}. Even finnicky physiologies would seem to be able to find a
comfortable combo set if there are 320 to choose from (course you might
die before you found the right set, what if your perfect set was #320 on
the list of combo sets to try).

Quote:
>I know this sounds a little paranoid regarding Schering Plough. But
>then again, maybe not, eh? ...

Well, as someone once said, "just because you're paranoid doen't mean
they're not out to get you". Its not Shering Plough, or even drug
companies, but the corporate mentality which bottom lines every damn
thing. I wouldn't want to second guess any agenda on their part, not
that they don't have one, but its just as likely to change tomorrow. All
you can hope is that the drug companies are all going for broke to be
THE CURE. Being a maintainence cure opens you up to losing that business
to someone with THE CURE.

enough blather...

Take care diver man.

Michael in LA



Fri, 10 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Yo Mikey:

Perhaps

Quote:
>non-responders are currently being misdiagnosed and are actually
>"slow-responders" (a new catagory of sickies!).

Yeah, good point.

Quote:
>Whoa. Amazing. Im looking forward to that paper.

Yeah, me too. I guess I better ask him if/when we can expect it.

But this may not help a

Quote:
>lot of people who can't tolerate INF, (I'm thinking about JJ,III who
>posted recently about being told to go home by the Doc.)  On the other
>hand, perhaps they could dial it down to inperceptable sides.

I was thinking this myself.

 All

Quote:
>you can hope is that the drug companies are all going for broke to be
>THE CURE. Being a maintainence cure opens you up to losing that business
>to someone with THE CURE.

This is really the ironic part isn't it? On the one hand, you gotta
hate them {*filter*} sucking capitalist pigs for squeezing money out of
other people's misery. But it's that same acquisitive spirit at the
heart of the capitalist system that is likely to lead to a cure, if
not a tolerable lifelong management regime.

Later...



Sat, 11 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:
>I hear what you say, but can't totally agree.
>For a start how many people like being guineapigs, particularly when
>there are other options and incalculable side effects?

I get the impression that a lot of people are dying (sorry) to get into
INF/Rib trials. But many more are afraid of unproven therapies. I myself
am glad to sacrifice unknown side effects for a chance to live, but I
hear you for sure.

Quote:
>the odds of a good and productive life are pretty good even untreated, and
>probably even exceed the statistical probabilities as you are now aware
>of the problem and are giving your liver an easier time than those whom >are a part of those statistics.

Not totally clear on your point here. But one bad thing about sitting
out therapy is not the impending cirrhosis but the impending cancer.
This is what I think about, anyway. We somewhat "healthy" sickos can sit
at home with our non-symptoms and our low or normal ALTs and low PCRs
and wait for a really good therapy to show itself. But the clock is
ticking on liver cancer, perhaps past the point of no return. Where,
even with a cure, one still ends up with liver cancer from so many years
of irritation. Like someone giving up smokes and still getting lung
cancer from the accumulated damage years later. If I'm going down, I'm
going down fighting.

Quote:
>Another stratagy, one I intend to adopt if my current INF treatement
>fails,is to wait. That's right wait. Eat well, lower my iron levels as low
>as possible, take the milk thistle, vitamins E and C and licorice. then wait
>for RIBA/IFN to be approved. As well as this in the time it takes for this
>combo to become available down here there will likely be other
>promising treatments emerging to consider.

Michael in LA


Sun, 12 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:

>We need both a better understanding of EXACTLY
>how HCV causes fibrosis/liver damage or transforms cells so that we
>can target both the virus AND do everything necessary to preserve
>liver tissues and function.

Yeah, and one wonders if anyone is even looking at that stuff. The
research protocol would be a real bear, complex biochemistry and human
subjects.

Quote:
>The most successful approach to HIV/AIDS
>is similarly not just attacking the virus but also improving the host
>immune response, dampening the hyperactivated aspects while
>endeavoring to repair damaged tissues.

Interesting. Do you know if INF is being used for AIDS? You're saying
that INF or some other agent which does the same thing is being used to
boost immune response and that is part of the 11 approved {*filter*}? Just
curious.

Quote:
>And the only reason that HIV has so many {*filter*} is
>because many folks (myself included: I've had too many friends die of
>AIDS) ACTted UP, raised hell and got attention and money. We must do
>the same!

Total agreement. The gay community has taught us hep sickos a lesson if
we are only smart enough to learn it. The number of research dollars
invested in AIDS per capita of AIDS deaths is far greater than the
number of dollars invested in Cancer per capita of Cancer deaths. These
boys know how its done, and we should pay close attention. On the other
hand how many "HEPC Pride" parades you been in lately. They have a
rather significant advantage in organizing.

Michael in LA



Sun, 12 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Michael,

I agree with you about taking the INF/RIBA treatment.  I do not have
abnormal ALT's but I do have a high viral load.  My doctor may or may not
put me on the INF/RIBA treatment but I have news for all these doctors, I
am taking the INF treatment if I have to get it across the border.  Even
if i'm lucky enough to not have any major damage I am not waiting any
longer.

I am having another biopsy this Friday and all I'm waiting on is the
results and I am ready to go.  I know that I will respond not only because
I am a 2b but also because I know I'll have that attitude.  I refuse to
walk around with a high viral load and be around my family anymore.  The
higher the load the more the contagious.  What the hell are these doctor's
thinking?  I already anticipate what my doctor is going to do and I know I
will have to put up one hell of a fight for the INF/RIBA.

I have an 82-year-old uncle that took Interferon because of kidney cancer
and that was 3 years ago.  He is doing great, no side effects from the
INF.  If he did, they must have been very minimal because he never
complained.  He is my inspiration to INF.

Karin



Mon, 13 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Karin,

That's what I like to hear.  Take control, kick some ass.
ATTITUDE, ATTITUDE, ATTITUDE!!!!

                    Jim Jenkins
                    HCV 20+ yrs.
                    kicking its' ass 3+yrs.


Quote:
>Michael,

>I agree with you about taking the INF/RIBA treatment.  I do not have
>abnormal ALT's but I do have a high viral load.  My doctor may or may not
>put me on the INF/RIBA treatment but I have news for all these doctors, I
>am taking the INF treatment if I have to get it across the border.  Even
>if i'm lucky enough to not have any major damage I am not waiting any
>longer.

>I am having another biopsy this Friday and all I'm waiting on is the
>results and I am ready to go.  I know that I will respond not only because
>I am a 2b but also because I know I'll have that attitude.  I refuse to
>walk around with a high viral load and be around my family anymore.  The
>higher the load the more the contagious.  What the hell are these doctor's
>thinking?  I already anticipate what my doctor is going to do and I know I
>will have to put up one hell of a fight for the INF/RIBA.

>I have an 82-year-old uncle that took Interferon because of kidney cancer
>and that was 3 years ago.  He is doing great, no side effects from the
>INF.  If he did, they must have been very minimal because he never
>complained.  He is my inspiration to INF.

>Karin



Mon, 13 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Karin sez:

Quote:
>Michael,
>I am having another biopsy this Friday and all I'm waiting on is the
>results and I am ready to go.  I know that I will respond not only because
>I am a 2b but also because I know I'll have that attitude.  

YES!!! THAT is the right attitude. Let's rock and roll! Mind-body is the
easiest of the alternate therapies to prove beyond a doubt.

As Jimi Hendrix said: "I walk right up to the mountain, and chop it down
with the edge of my hand."

Michael in LA



Mon, 13 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Quote:


>>We need both a better understanding of EXACTLY
>>how HCV causes fibrosis/liver damage or transforms cells so that we
>>can target both the virus AND do everything necessary to preserve
>>liver tissues and function.
>Yeah, and one wonders if anyone is even looking at that stuff. The
>research protocol would be a real bear, complex biochemistry and human
>subjects.

The biochemistry is indeed complex--like the human body! But it can be
understood to a certain degree. More importantly, though admittedly
challenging, the clinical outcomes of protocol therapies that include
herbs or nutrients would be of great interest.

Quote:
>>The most successful approach to HIV/AIDS
>>is similarly not just attacking the virus but also improving the host
>>immune response, dampening the hyperactivated aspects while
>>endeavoring to repair damaged tissues.
>Interesting. Do you know if INF is being used for AIDS? You're saying
>that INF or some other agent which does the same thing is being used to
>boost immune response and that is part of the 11 approved {*filter*}? Just
>curious.

The 11 approved {*filter*} do not include interferon or immune modulators.
They consist of three broad classes: nucleoside analog {*filter*},
non-nucleoside reverse transcriptase inhibitors and the protease
inhibitors. Alpha interferon in various forms has been tried
(including the {*filter*}"Kemron" form) and basically failed in the
clinical studies. The only cytokine that appears to have some efficacy
is IL-2.

Quote:
>>And the only reason that HIV has so many {*filter*} is
>>because many folks (myself included: I've had too many friends die of
>>AIDS) ACTted UP, raised hell and got attention and money. We must do
>>the same!
>Total agreement. The gay community has taught us hep sickos a lesson if
>we are only smart enough to learn it. The number of research dollars
>invested in AIDS per capita of AIDS deaths is far greater than the
>number of dollars invested in Cancer per capita of Cancer deaths. These
>boys know how its done, and we should pay close attention. On the other
>hand how many "HEPC Pride" parades you been in lately. They have a
>rather significant advantage in organizing.

Hey--those are not "AIDS" Pride parades. They are GAY and {*filter*}
pride parades. There are lots of people who are co-infected with HIV
or have HIV or HCV or HBV alone. Orientation does not discriminate.

As to your per capita statistics: from whence are they derived? At any
rate: I think that what we need to do is not create an environment of
competition but a recognition that there is MORE than enough capital
investment resources available for healthcare issues--and given the
recent NEJM article on the abject failure of the "war on cancer," a
clear mandate that the big ticket items (AIDS included) can use some
improvement in not only the size of the pie, but how it is made.

George in NYC

Out, loud and proud.



Tue, 14 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments

Mike...any suggestions for literature on dosages for vitamins,
herbs.etc....hubby needs them...for hep c.....Not taking interferon as his
doc says he doesn't NEED it at this tyme after getting results of liver
biopsy....Thanx


Quote:
>But many more are afraid of unproven therapies.
> hear you for sure.

>We somewhat "healthy" sickos can sit
> at home with our non-symptoms and our low or normal ALTs and low PCRs
>  >promising treatments emerging to consider.

> Michael in LA



Wed, 15 Dec 1999 03:00:00 GMT
 New AIDS Guidelines - RE: HCV treatments


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