TOPIC:

Dear Mike,

No we did not travel. Maybe next year. Dr Debasis should have travelled but he is very busy with REDEMPTION consultations and rest of us are busy ensuring shippings go through. We are continuously on phone trying to clear packages. Due to heightened security customs clearances worldwide is taking longer than usual.

Warm Regards
Tim
MonkMed Care Team

mgalbrai wrote: From the HCV News Blogspot

•Does sustained virologic response represent a cure for hepatitis C virus infection?
hepatitiscnewdrugs.blogspot.com/2016/04/...uate-to-cure-in.html

•13 April 2016 - WHO issuing updated guidelines for treatment of hepatitis C infection
hepatitiscnewdrugs.blogspot.com/2016/04/...issuing-updated.html

•ILC2016 Treating patients for Hepatitis C could reduce the need for liver transplants
hepatitiscnewdrugs.blogspot.com/2016/04/...s-for-hepatitis.html

•Study raises questions about the risks of treating patients with late stage Hepatitis C virus
hepatitiscnewdrugs.blogspot.com/2016/04/...-about-risks-of.html

•ILC2016 Sofosbuvir/velpatasvir and experimental compound GS-9857 shows promise in Hepatitis C infected patients whose previous treatment has failed
hepatitiscnewdrugs.blogspot.com/2016/04/...velpatasvir-and.html

Hi Mike,

the message I seem to be getting from Ronald Koretz, MD about SVR is that Peg interferon may have done more harm than good??

Otherwise he seems to raise some good points about how this virus will do its best to survive.

Me being F3 in 2012, now probably F4, I have to rely on a common sense view that largely getting rid of the virus and therefore keeping my LFT's etc under control gives:

1. a small chance that liver and recurrence of a HCC wise, things might get better
2. an assumption that it may slow down the above getting worse.
3. a better quality of life on the way through.

The talk also seems to re-inforce the idea to get treated early before damage occurs. Another thought for me being an early non coper with Interferon is that I may have been lucky - Ronald Koretz, MD's early part of the talk did not seem to sing its praises too well and my partner at that time comparing it to giving a dog arsenic to cure heart worms come to mind.


yours with thanks for fishing these threads out for us to read.



Jeff.

Jeff thankyou for agreeing that Interferon did more harm than good it caused so many cell changes in me and many other serious sustained injuries such as audiometrically assessed higher pitch severe hearing loss, kidney damage including stones requiring surgery etc
I'm hearing you on this.
I was perfectly well before some fool put me on interferon. VL 420,000 no other tests done, I had no knowledge anyway of anything and got screwed. I'm F0 btw. They didn't even check until after.
Thanks Mike for the conference updates
I only hope they NEVER use peginf on ANYONE ever again
These new meds are easy
Plus they actually work.
Ariel, who is awaiting her 4 weeks post EOT bloods

Well Tim,
Someone has to mind the store, I suppose, and it couldn't be left in better hands...
I feel very, very fortunate that interferon was never an option for me. My disease was diagnosed right after Sovaldi and Olysio were first being prescribed "off-label".
I assume I would have gone for the interferon tx if I had been diagnosed, say, 10 years earlier.
I will never truly know.
My heart and soul go out to those brave, desperate people who went through that hell, only to be unable to tolerate that poison, relapse and/or suffer permanent physical and psychological damage as a result.
It is one reason I am doing what I do now. I am cured. The problem is not. I don't plan to stop until that situation is resolved.
The senseless restrictions on these new treatments, based on obscene pricing, is simply criminal.
It shames the whole concept of America and what she used to stand for.
M

I could not agree more Mike.

But I think in America we have been set up to be abused by the profiteers.

Generic drug prices are skyrocketing. Companies like Gilead are buying other companies, just so they can jack up the prices of medications. It's so sad, our once great nation is reduced to finance companies extracting profits by abusing us.

Globalization is the culprit. I will never understand allowing companies to manufacture in China and import duty free to USA. All our companies are moving operations overseas. In the end, we'll all be put out of work.

The most bizarre thing to me was those two senators who spoke against Gilead, and criticized their pricing. It was all bluster! I mean what was the point, if you aren't going to try and do something? They did it to get votes...sounds great, but they did nothing! ASSHOLES!!!

Politics-
It provides job security for liars, cheats and ego maniacs.
I don't think they could find work elsewhere.
M

sabrecat wrote:

mgalbrai wrote: From the HCV News Blogspot

•Does sustained virologic response represent a cure for hepatitis C virus infection?
hepatitiscnewdrugs.blogspot.com/2016/04/...uate-to-cure-in.html

I am not a doctor but I do have a brain in my head.
The speaker said that people with SVR AND fibroscans of F3 and above have a 1% chance annually of developing liver cancer. I wonder what the rate is for people who have F3 or above but didn't have HCV.
Makes me wonder whose hymn sheet he's singing from.

Hi Jeff,

Thanks for highlighting Ronald Koretz' article. I had previously dismissed it based on the blurb and first few seconds of the video but your comments made me return to it. He is obviously an outlier of the HCV field in many ways but that is not necessarily a bad thing if it encourages others to review their positions and actions.

Personally I disagree with what appears to be his main contention; that because there is not a complete alleviation of all progression of liver disease in all patients after SVR then it is not a cure. I get his argument that Interferon+/-Ribavirin was not always beneficial and has ongoing problems for many patients (hah, I'm a walking argument for that proposition) but I believe that was well known but certainly not universally acknowledged in the Hepatology community for a long time. Interferon was always seen as less than benign in other fields were it was used too but was usually the only option available at the time. However, for him to extraplolate that to the current use of DAAs is a big leap based on the evidence so far. I think that while it is early days for DAA treatment, the benefits we are seeing accrue for the many outweight the possibility that for a few the outcome won't change. As he would ask of others, where is his evidence to support his current position? Having said that I do agree with his points about evidence based medicine rather than just marketing driven and that does mean long term follow ups. That is how we learn and progress science/medicine.

In the meantime I agree with your three points of benefit, though I suspect you understate the first. The evidence seems to be building that while it doesn't completely remove the risks there is a significant risk reduction there. The third point is the real winner though!

Edit: beachs, good point about his hymn sheet. As I said, a review of his history shows him to be an outlier though I didn't find much about his drivers. Hopefully an enquiring mind but???

I suffered every dose on interferon, but it is the reason I am alive so I am grateful I got it when I did. the word interferon does curdle me somewhat, but here I am. Its not that it should never have been used in the past but it shouldn't be now.

Some of us take longer Hazel, but I didn't have to go through Interferon - Thanks to Greg J, Dr F & MonkMed.
So glad to see your UND there on your profile

Still waiting for mine, (delays at lab this week - annoyingly!). UK medics consider my <12 'job done' - We shall see.
My very best wishes to you.
Stay well.
lg

(edit) Dear Tim, I am not surprised you & Dr Debasis are so busy You both take such an interest in your patients and speak at length with every one of us who have concerns. I want to write a BIG public thank-you to you both

pps : Here's the official Redemption Trials link again for anyone Tweeting in support of Dr Freeman today #ILC2016 :
www.clinicaltrials.gov/ct2/show/NCT02657...rm=redemption&rank=1

mgalbrai, thanks for sharing links.

If i correctly understand, the problem, mentioned by Dr. Koretz, is that hcv treatment, from point of view of "evidence-based medicine", really, is a bit experimental treatment, like clinical trials... SVR is "unvalidated surrogate" and we cannot exclude that, in future, for example, new much more sensitive tests may be developed and all people with SVR may become "HCV-carriers", detected by those very sensitive tests...

There is another text about similar issues - www.openhealthnews.com/story/2015-01-18/...is-c-drug-treatments

-The best evidence available suggests that most patients with hepatitis C will not go on to have severe complications of the disease (cirrhosis, liver failure, liver cancer), and hence could not benefit much from treatment.

-There is no evidence from randomized controlled trials that treatment prevents most of these severe complications

-There is no clear evidence that "sustained virologic response," (SVR), the surrogate outcome measure promoted by the pharmaceutical industry, means cure.

-While the new drugs are advertised as having fewer adverse effects than older drugs, it is not clear that their benefits, whatever they may be, outweigh their harms.

if these drugs have not been shown to do more good than harm, and the lack of evidence is clearly the responsibility of the drugs' manufacturers who chose not to do very large and/or long-term randomized controlled trials and not to assess clinical outcomes, what justification is there for the gargantuan prices of these drugs?

Possibly, it may have some consequences... For example, if we will make a strategy "to treat everyone hcv-infected as soon as possible" - what does it mean in terms of "evidence-based medicine"? Does it mean "to involve everyone of hcv-infected in a some sort of large uncontrolled "clinical trial"?

P.S. About tolerability of treatment - i know one guy, who tolerated high doses of interferon without significant problems, but, surprisingly, he did not tolerated several months of sofosbuvir. He achieved SVR after discontinuation of sofosbuvir.

Hi Serg, I see this as the point being made possibly?

what justification is there for the gargantuan prices of these drugs?

What treatment helped your difficult to treat friend reach SVR in the end?

I agree there is much more detailed research to be done, I guess this just the beginning.

btw - Portugal treated everyone with HepC and have reported 96% SVR at ILC2016 I believe. So you could say they did a massive trial!

Hi LondonGirl, yes, i agree.

He used such schema:

1-7 weeks - sof+dac
8-9 weeks - sof+dac+simeprevir
10-24 weeks - dac+simeprevir+ribavirin

Hi Serg,

Well yes, apparently Roy M. Poses MD has those beliefs. Again I'm unable to find any evidence provided by him to back them up. Maybe a cautionary canary in the mine? Possibly but there don't appear to be large numbers of other medical professionals taking a lot of notice of his song.

The best evidence available suggests that most patients with hepatitis C will not go on to have severe complications of the disease (cirrhosis, liver failure, liver cancer), and hence could not benefit much from treatment.

Hmm, so most patients who don't have the three HCV related complications he mentions will get no benefit from treatment because their complications aren't severe enough? Maybe he has "evidence based medicine" that shows that F3 patients lead a perfectly normal, active, healthy life with no ill effects? Perhaps he has been provided with enough "evidence based medicine" to prove to his satisfaction that no extrahepatitic manifestations of any kind occur?

For the rest of his arguments all I can do is thank him and tell him I will take his caution under advisement. No doubt I and most of the rest of the world will get on with the great experiment of living. By doing so and taking what appears to be the best option available currently we will gradually build up the "large scale trial evidence" he apparently requires before he makes decisions. Of course this may take a few decades but personally I don't have time to wait.

From Twitter : Get ON that soap-box Dr F !




oh well that didn't work ! will try again in a bit.

(tried to add a cool photo while traveling but it didn't work).