Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I've mentioned this before but I think it's crucial to understand that pharma can and does report results mostly on their successful trials and hides the results of the unsuccessful trials.
That being said, this trial was absurdly tiny considering how many people have completed this tx and trials just w/vets are particularly tricky for the reasons mentioned.
So, although I believe these statistics may be accurate, there's nothing in that article to convince me of that.
I always had said the numbers were cooked up, as everyone was falling out like fly's , many people dropped out as they have started, a lot more than the 20% drop out claims. As we find it out from an other report/warning the morbidity rates were a lot higher in real life circumstances than on the trials.
So - this is also something that applies to the trial reports from the NEW DAA's and protease inhibitors (Sofosbuvir, Ledipasvir, Daclatasvir, Simeprevir ....) - right? We just don't KNOW the whole truth!
That said, many of us in later stages are waiting and will no doubt (at least myself) try to "cure" with the new drugs coming out soon. As long as the sides aren't too bad, I guess it's worth taking a chance ... the sides of Incivek are HORRIFIC, and the sides of Victrelis not much nicer ... and from what I've read, no sides of any signficance (or shall I say, "noticeable" sides) with Sofosbuvir and Ledipasvir - can't remember about the others in trials. But IF these "new kids on the block" might mean the virus mutates fast, hides and comes back - and then is even harder to treat - hmmmm. Guess we all just keep informed, find doctors we trust (not easy sometimes) and make decisions as the drugs become available.
http://www.onthemedia.org/story/304578-portraying-medicine-the-perils-of-painting-by-numbers/
ORLANDO, Fla. Anurag Maheshwari, MD, transplant hepatologist at the Institute for Digestive Health and Liver Disease at Mercy Medical Center in Baltimore, discusses his poster, Sa1059: The Experience with Telaprevir-Based HCV Therapy in Community Practice Does Not Mirror the Clinical Trials Data, at Digestive Disease Week 2013.
Maheshwari notes that the morbidity associated with telaprevir-based treatment is much greater in real-world practice than had been indicated previously. He urges caution among clinicians in the administration of telaprevir, and stresses the need for rigorous side-effect management protocol and adequate long-term follow-up for patients with HCV receiving this treatment.
http://www.healio.com/infectious-disease/hepatitis-resource-center-2013/anurag-maheshwari-md-on-telaprevir-based-hcv-treatment
The lies are coming out.Will be a class action lawsuit very soon i know it. We have been fed with the golden spoon with the trial data by Vertex.
As a non responder to SOC my Drs did not even suggest I attempt again with triple.
I suspect that is why The Dr. at the Liver Centre restrains from much excitement over new drugs. They sometimes prove to be less than the stellar results conveyed by the Pharmas
David Wong
"So many hep C studies - how to make sense of them all? As a first approach, I think you need to give the study a "degree of difficulty" rating - something similar to a diving competition. Did they study easy patients or difficult patients? To answer this question, look for the following that might make the difficulty level go up: Do at least 25% of patients have cirrhosis? Did they allow genotype 1a or only allow genotype 1b? Did they allow IL28b CT or TT or did they only include IL28b CC? Did they allow patients who failed prior treatment as null responders? partial responders? or did they only include relapsers and treatment naive? The truly impressive combination will handle all of these with SVR rates over 90%."
Is the statistic we should care about the number of people who START TX and get SVR, or the number of people who FINISH TX and are SVR
If someone drops for non compliance, which i can easily understand considering the terrible SX, should they count in the stats are not being cured?
When I started triple about 2 years ago the SVR percents they quoted, which i think were in the high 80%, were clearly based on completing treatment
And if the 'wrong' type of candidates (genotype, cirrhosis, abusive behavior) are in the study is it really representative of what YOUR success rate will be?
I failed twice on SOC, I'm SVR on triple. Mileage may vary, but for me it was a success
That is what I believe this study's intent was. To present "real world" rates, not controlled trial results.
see:
http://www.hepmag.com/articles/hepatitis_victrelis_null_2501_22268.shtml
For the first attempt I completed treatment as undie, then once i stopped SOC the VL rose back to the millions. Clearly a relapser
But the second time they stopped me after a few months because i didn't get undie, so that sounds like a non responder
What's odd is that the two attempts were essentially done with the same meds, the only difference is that the second time the interferon was pegylated. And it was pegylated when i successfully did triple
With all the people on this forum, and two years of watching it, it sure seems to me that we're doing well better than 33%
Need COFFEE! :0
Again congrats Joe..a hard battle you fought a few times but finally won!