Hep C Discussion Forum

Isiscat2011 wrote:

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 If you keep an open mind, and spend a substantial amount of time studying this, perhaps you too will understand the cdc info in context. 

 

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You don't seem to understand that the cdc.gov information is catered to the general population.  It's generalized and simplified for an average person.  So, when they state that over 5-20% will develop cirrhosis over 20-30 yrs, it's on average 20-30 yrs.  Some will develop cirrhosis sooner and some later.  If you spend a lot of time scrutinizing and "contextualizing" this info, you are nuts.  We can call you fruitcake from now on. How is that? :)

znobs wrote:

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 Source?

Hep C was identified only 25 yrs ago so how do you what happens after 30 yrs w/ Hep C progression?

 

You seems to have a problem accepting the cdc.gov information, but  it is based on what is available since HCV was identified in 1989. 

 

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I have no problem accepting the cdc information.  The difference being that I can contextualize, and hence, understand the information and you cannot. If you keep an open mind, and spend a substantial amount of time studying this, perhaps you too will understand the cdc info in context. 

Various studies pre-date the naming of the HepC virus.  This virus was being studied back when it was called non-A non-B.   I'll spend a few more minutes on this, and then I'm done.  

There are numerous studies that have concluded the progression of liver fibrosis is non-linear and that rate of progression can be expected to increase as people age but, no, I am not going to list them for you.  

Here is an excerpt of an article written by Seela Ramesh, MD and Mitchell L. Shiffman, MD, that should give you a basic understanding of the progression. Please pay special attention to the last sentence as it applies directly to you:  

The natural history of chronic HCV and cirrhosis is now well established. Our understanding of this is based upon prospective long-term natural history studies initiated in the 1970s prior to the development of interferon therapy and cross-sectional studies of patients with chronic HCV being evaluated for HCV treatment. As depicted in Figure 1-2, patients with chronic HCV can be divided into one of three groups: (1) patients who will never develop any fibrosis; (2) patients with rapid fibrosis progression who develop cirrhosis within 20 to 30 years after being exposed to HCV; and (3) patients with slow fibrosis progression who would eventually develop cirrhosis but at much slower rates, which would require 30 years or more following exposure. Many persons in this later category may endure 50 to 60 years of chronic HCV infection before they develop cirrhosis. Chronic HCV may therefore not cause morbidity or contribute to mortality in these patients until they reach the seventh or eighth decades of life. During this entire time the great majority of patients with chronic HCV infection are asymptomatic.

Figure 1-2. Fibrosis progression in patients with chronic HCV.

The use of liver biopsy and examination of liver histology has traditionally been utilized to assess the risk of developing cirrhosis. The role of liver biopsy in the assessment of patients with chronic HCV is discussed in Question 3. The largest prospective study to evaluate fibrosis progression was initiated in the 1970s prior to the identification of HCV.² This study enrolled patients with non-A, non-B hepatitis, over 95% of whom tested positive for HCV when this assay became available in the early 1990s. After an initial liver biopsy, these patients were followed prospectively for 20 years. Repeat liver biopsy was performed after 10 and 20 years or when these patients were thought to have developed cirrhosis based upon clinical grounds. All patients with bridging fibrosis on the initial liver biopsy developed cirrhosis within 5 to 10 years. All patients with portal fibrosis also developed cirrhosis, but this required 10 to 20 years. In contrast, less than 25% of patients with no fibrosis on the initial biopsy developed cirrhosis within 20 years. It is therefore apparent that patients with any degree of fibrosis will progress and eventually develop cirrhosis.

http://www.healio.com/gastroenterology/curbside-consultation/%7Ba8b9ec89-2c79-4696-a702-84e9fad15233%7D/what-is-the-likelihood-t 

Isiscat2011 wrote:

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After 30 years of infection fibrosis progression continues and generally at a more rapid rate.  Fibrosis progression is non linear.  

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 Source?

Hep C was identified only 25 yrs ago so how do you know  what happens after 30 yrs w/ Hep C progression?

You have a problem accepting the cdc.gov information, but  it is based on what is available since HCV was identified in 1989. 

-- Edited by znobs on Thursday 26th of June 2014 11:27:54 PM

Tig56 wrote:

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To treat or not to treat, that is the question.... 

Its a personal decision, one that you have to make based on reasearch and inner reflection. Sounds like you're not convinced znobs and that's up to you. Are you here seeking proof of need or trying to understand why we have chosen to try? 

Tig

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Very intuitive and insightful, Tig.  

I understand znobs reservations completely and I think it is good that he is thinking critically about his options. As you say it is a personal choice.  Once we have been burned by treatments it is hard to take that leap of faith and jump in again, but treatment is changing, and the older we get the more important the decision becomes.  

The odds increase as we age that hepc will negatively impact our quality of lives (or even kill us directly or indirectly depending on our individual health conditions).  Moreover, the tx is often harder on the aged.  This disease is not kind to the aging population.  

znobs wrote:

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 I don't think you understand the cdc.gov report. According to the report, 80-95% of people w/ Hep C will NOT become cirrhotic. I'm one of them. 

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You are misunderstanding the limited data you are reading and also taking it out of context.  The context we are discussing is the entirety of a person's life; not merely 20-30 years following infection.  That only 5-20% will develop cirrhosis in 20 to 30 years post infection does not mean that after 30 years nobody else will.  

The study is limited to 30 years.  After 30 years of infection fibrosis progression continues and generally at a more rapid rate.  Fibrosis progression is non linear.  

Isiscat2011 wrote:

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znobs wrote:

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I meant to say LESS THAN 5% will die from it.  It's a very low number when you consider the percentage of people who die from medical mistakes -- somewhere around 10% I believe.  I may be wrong, but the point is that, for Hep C,, the treatment  has been worse than the disease for many.  

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Hi znobs:

I agree with your conclusion that for many the hepc tx has been worse than the disease and it would be disingenuous to deny this.  It has been a pet peeve of mine that questionable tx has often been so emphatically encouraged for everyone who is diagnosed with hepc, not only by many in the medical community, but worse, by the hepc community.  Additionally, we have been guilty of dismissing and ignoring our own when they spoke out about the down sides of tx.  I've observed this mentality in a number of forums I have browsed.  

Having said that, I strongly believe that we are experiencing a paradigm shift in hepc tx where treatment will almost always be better than the natural progression of the disease and there will be no meritorious reason for hepc sufferers not to treat as soon as they wish to.  Perhaps this is wishful thinking on my part, and it 10 years time everyone who treated with the new DAAs will develop brain cancer. You just never know.  But, the bottom line is that for some people tx becomes their only hope for returning to decent health and an improved quality of life.  

Aside from liver related deaths, hepc can and does effect other systems and can debilitate or indirectly kill in that manner.   This is a disease we have to take seriously and cannot afford to ignore.  

I always appreciate reading and discussing the issues from both sides so I thank you for your comments. 

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 It is not only HCV that has been neglected, The CDC themselves list several "Under-treated disease", like Shingles"POX" for instance.

Isiscat2011 wrote:

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znobs wrote:

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I'm 66 and my liver has been in Stage 1 for at least 16 yrs.  This is based on biopsies in 1998 and 2014. I'm in good health other than the Hep C.

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That's great! You are a lucky duck.  There is a segment of the population who would take 50 or more years to become cirrhotic.  Most, but not all, hepc sufferers will become cirrhotic at about age 65.  Also, not all will develop non-liver related hepc conditions.  

Still, when the tx becomes safe and effective might as well do it.  Just in case your fibrosis decides to increase its rate of progression and you decide to live to 100.  

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 I don't think you understand the cdc.gov report. According to the report, 80-95% of people w/ Hep C will NOT become cirrhotic. I'm one of them. 

I'm 66 and my liver has been in Stage 1 for at least 16 yrs.  This is based on biopsies in 1998 and 2014. I'm in good health other than the Hep C.

mallani wrote:

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...I enclose links about liver fibrosis progression. This is to do with progression to cirrhosis, not HCV death rates! Cirrhosis is not a death sentence.

http://www.ncbi.nlm.nih.gov/pubmed/17355454....

 

The link concludes that "most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection." 

This link seems to contradict the information provided in cdc.gov which states that about 5 - 20% of people infected with Hep C will go on to develop cirrhosis over a period of 20 - 30 yrs.  The cdc.gov report does not, however, mention whether the numbers relate to treated or untreated people but the implication is that people (treated and untreated, combined) will have 5-20% chance of developing cirrhosis.

 

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Hi znobs,

A belated reply to your 'Source?'. I've had a colonoscopy and gastroscopy today, and have not been on the air.

I enclose links about liver fibrosis progression. This is to do with progression to cirrhosis, not HCV death rates! Cirrhosis is not a death sentence.

Most patients with HCV will die with it, rather than from it. Various studies have tried to give death rates ranging from 5 to 20%. This is all speculation as HCV has not been around long enough. Deaths in HCV are invariably due to liver failure, complications of portal hypertension or HCC. However, HCV may cause a host of conditions, e.g. diabetes. If a patient with HCV dies from a diabetic coma, would HCV be linked to the death?

The aim is to prevent patients from becoming cirrhotic. Some of us have tried repeatedly in the past. Until recently, treatment was often difficult, and SVR rates were not great. However, we would relapse, then go back for more. Cirrhotics could be treated successfully but the treatment was even more difficult.

In the USA, it seems that cirrhotics and F3's are given priority with Insurance Companies who are paying for the new DAA's like Sovaldi. These are the patients who should be treated fairly urgently. Costs will come down as new drugs are approved and within a few years, all patients with HCV should be able to access the new drugs. What happens in the rest of the world is a guess. Rich countries like Germany etc. should fund these drugs.

I had a chat to my doc after my procedure. Sovaldi is not even approved in Australia, and is unlikely to be. AbbVie seems to have a deal for their combo, so we should hopefully have that in a couple of years.

http://www.medscape.com/viewarticle/554637

http://www.ncbi.nlm.nih.gov/pubmed/17355454

Loopy Lisa wrote:

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It is a very interesting conversation. I think some of us also worry about infecting others. I read typically one person can infect up to 20 others in their life time. Also some of us have pain, fatigue, brain fogs related to Hep C even without liver damage.

It is correct no one should be pushed into treating if they don't want to, but it is fair to tell people that you drive with, or share a home with. We do have an obligation to protect others from our infections. :)

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Sure, but is the concern for infecting others a legitimate reason to subject  hepc sufferers/ourselves to harsh and often ineffective tx?        

I think others worry about HCV carriers infecting them and many are not too kind about it.  I've read comments  where people offer their views to the effect of:  "HCV sufferers should be required to be treated and not with the expensive "designer" drugs, either.  If some don't make it through the tx, oh well, it thins out the heard, and makes the world safer for the rest of us."   I'm sure that opinion is more common than we think; it just isn't expressed openly.  

IMO, people who we have casual contact with don't need to know but that is a personal choice.  Precautions can be taken with those we have intimate relationships and/or live with.  The uninfected population is probably more at risk from people who don't even know they have hcv.

znobs wrote:

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I meant to say LESS THAN 5% will die from it.  It's a very low number when you consider the percentage of people who die from medical mistakes -- somewhere around 10% I believe.  I may be wrong, but the point is that, for Hep C,, the treatment  has been worse than the disease for many.  

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Hi znobs:

I agree with your conclusion that for many the hepc tx has been worse than the disease and it would be disingenuous to deny this.  It has been a pet peeve of mine that questionable tx has often been so emphatically encouraged for everyone who is diagnosed with hepc, not only by many in the medical community, but worse, by the hepc community.  Additionally, we have been guilty of dismissing and ignoring our own when they spoke out about the down sides of tx.  I've observed this mentality in a number of forums I have browsed.  

Having said that, I strongly believe that we are experiencing a paradigm shift in hepc tx where treatment will almost always be better than the natural progression of the disease and there will be no meritorious reason for hepc sufferers not to treat as soon as they wish to.  Perhaps this is wishful thinking on my part, and it 10 years time everyone who treated with the new DAAs will develop brain cancer. You just never know.  But, the bottom line is that for some people tx becomes their only hope for returning to decent health and an improved quality of life.  

Aside from liver related deaths, hepc can and does effect other systems and can debilitate or indirectly kill in that manner.   This is a disease we have to take seriously and cannot afford to ignore.  

I always appreciate reading and discussing the issues from both sides so I thank you for your comments. 

Fireman Rob wrote:

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...Now if only the price will go down for the even better Sovaldi/Ledipsivur coming in October.....

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 I  can't decide between Sovaldi/Ledipasvir and ABT-450/r, ombitasvir, dasabuvir.  I'm  Genotype 1b, Stage 1, treatment experienced. 

Granted the statistics state that 5% or less might die from the actual disease, or better stated, will die from complications of the disease, cirrhosis, HCC, etc. You're also correct that the treatment is a bear for many that undergo it, but that is more true for the individuals, like myself that have gone through multiple attempts of the Interferon backbone protocols, not the new DAA's and non Interferon treatments. In many instances, here as well as anecdotal evidence elsewhere, the new DAA's offer very little in the way of harsh side effects. So the worry of painfully long, harsh side effect laden treatments is hopefully more a thing of the past, versus a worry for the future. Also something to consider is while there may "only" be 1-5% of the affected HCV population that actually dies from the virus, that doesn't address the total number of people impacted by it. It also fails to account for the costs involved in treating the problems associated with the disease. 5% might die, but what percentage have had to treat the symptoms of the disease? There is a huge number that may develop cirrhosis, say 20%. What is the cost in treatment, the amount of pain and suffering experienced by them through the course of that care and treatment? 60 - 70% of those exposed go on to develop chronic disease. Many will go decades without knowing, yet experiencing the damaging effects of the disease. Many wondering why they're sick and treating the symptoms instead of the disease. Missing work, impacting families, lower quality of life, etc., etc. are all problems associated with this disease. The longer you or anyone with it goes without treatment, the virus grows and continues to impact your life and the lives of those around you, whether you know it or not. So while the treatments can be harsh, they are improving rapidly and with the near 100% rates of SVR, now is a very good time to treat. In October, another very effective combination is due for release and others in the R&D pipeline as well. So don't lose yourself in the stats of the past, the future of HCV treatment is very bright and promising. Without the ugly side effects and frightening treatment stories of the recent past. The time to treat has never been better!

Tig

Hey Znobs,

Actually the data I've read states 1-5% will die, typically from cirrhosis or liver cancer.

Tig

http://www.cdc.gov/hepatitis/c/cfaq.htm

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

• 75-85 people will develop chronic Hepatitis C virus infection; of those,

• 60-70 people will go on to develop chronic liver disease
• 5-20 people will go on to develop cirrhosis over a period of 2030 years
• 1-5 people will die from cirrhosis or liver cancer

Great question. I don't have an answer but it's really a good question. I think lifestyle also plays a role in the progression, as well as sex, age, genotype that were mentioned before. But I'll share my story. diagnosed at age 34, yearly ultrasounds since age 45 have shown some liver enlargement, biopsy at age 50 was normal, enzymes have always been high end of normal, current age 55 with no liver damage noted as of yet. I quit drinking at age 38, am female, have genotype 2, am overweight, exercise regularly, eat mainly heathy food but will binge on junk when stressed out, viral load at start of tx 19,000,000. Will have to wait to find out what it all looks like when I'm 65. Odd thing is I've never really felt sick. I've always had energy, no pain in liver or abdomen, no yellowing of eyes or skin. The only time I felt sick was when I was on tx. Though I have tested positive and had a high viral load, I rarely even get a cold or have flu like symptoms. So immune system probably plays a part too. I am UND  4 weeks post tx so I'm hopeful that I will remain that way. Thank you to everyone on this forum. I feel blessed to have found my way here.

gigi

wish I knew. I know my doc go by a meld score that they get from blood. 2000 I was stage 0, but the hepa told me if all depended where they went in. makes sense. 14 yrs later stage 4 with little cirrhosis (sp). my meld score is 7, it was an 8. so it went down. 14 is when they want to put u on list. I was in clinic with a man that had 2 transplants within 8 days. & then another surgery 2 weeks after that. the first transplant had a leaky valve. he looked great, up walking, normal. I told him he was my inspiration. my blood type sucks tho. I am o- so it may depend soley on if there is one IF I had to ever have one. At UMMC in Jackson ms the transplant center has nopw been here for 2 yrs. done about 40 transplants. sounds like a positive to me. I love that place.. I will beat this. so I figure it is God's hands. & I know he wants me to be here for my grands. specially my 13 yrd granddaughter who is the fastpitch softball player that Miss state is already looking at. that is my dream.. :)