U.S. Morbidity

I was doing some research and was shocked by the number of people in the United states now dying due to hepatitis c every year.  It seems to be a rising number.

Around 26,000 people died of hep c in the U.S. in 2006, and that's the last year for which there are mortality numbers.  To put that into context, here are some other U.S. mortality figures from 2006:

Breast cancer: 40,970
Leukemia: 22,280
Pancreatic Cancer: 32,300
Prostate Cancer: 27,350
HIV: 14,627 (does it not FLOOR you that we now have TWICE as many deaths
as there are HIV deaths, with only a FRACTION of the funding!!???)
Heart Disease: 629,191
Cerebrovascular Disease: 137,265
Diabetes: 72,914

There are expected to be around 38,000/40,000, new deaths due to hepatitis c in 2010 (if not more)

Liver disease was in the top fifteen causes of death in the US in 2006.  Actually, I think it was in the top twelve.  Here is the entire list from 2006:

1. Diseases of heart
2. Malignant neoplasms
3. Cerebrovascular diseases
4. Chronic lower respiratory diseases
5. Accidents (unintentional injuries)
6. Alzheimer’s disease
7. Diabetes mellitus
8. Influenza and pneumonia
9. Nephritis, nephrotic syndrome and nephrosis
10 Septicemia
11. Intentional self-harm (suicide)
12. Chronic liver disease and cirrhosis
13. Essential hypertension and hypertensive renal disease

Here's a link to the cdc information if anyone is interested:

http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_16.pdf

I just found the numbers to be so compelling.  I didn't realize it was quite as bad as it is.  We certainly need a great deal more attention to it.  I've been talking to people about it more and more, and it seems as though every time I tell someone about it, someone close to them has it as well.  Everyone knows someone, or has someone they care about who is suffering from hepatitis c.  I honestly don't think we have any idea about the true dimensions of the problem in the U.S. alone, much less in some of the other countries.  And growing fast.

[HCA]

Yes,the profile and prognosis has changed.
Some years ago it was accepted wisdom that only one in five would develop cirrhosis.
As the baby boomer Hep C has aged it looks more likely that the majority(if not the vast majority) will be cirrhotic by around age 65.This is thought to be due to weakenimg age related immunity
We are also learning that it is not the virus per se that causes progression but our own altered auto-immune response to chronic infection.

[alagirl]

We are also learning that it is not the virus per se that causes progression but our own altered auto-immune response to chronic infection.
-------------------------------------------------------------------------------------
Of course, I was an acute, newly infected patient with a 1b genotype, so my best shot at clearing was to treat immediately (and I did).  But if I had been chronic when I found out I had hep c, I probably would have treated quickly anyway for the exact reason you mention.  My autoimmune issues have wreaked havoc on my body my entire life, and I would have been very afraid that in responding to the hep c, my own system would eat me alive.

[mremeet]

The thing is, is that many more die of secondary issues triggered and/or exacerbated by hep C. And yet the cause of death is listed as diabetes, cancer, alcoholism etc, instead of what originally caused or greatly contributed to the actual direct reason of death. Also, hepatitis C undoubtably has and continues to make at least some impact on suicide rates. How many is not known, but hep C definitely takes a significant psychological toll on many. Based on my own experiences, I'm quite certain it has been much more than the straw that broke the camel's back on many who have died by their own hand. HCV's total toll on humanity is incalculable.

[Trinity4]

That's why I think it's so important to treat early on.  In my case, probably had this disease over 30 years and didn't know it.  Working, raising kids, not eating as healtly as I should,  drinking a bit too much at times over the course of my life and at 55 years old I find out I have hepc with Stage 3 liver disease.  Had I known, wouldn't I have done things differently.  Many of us find out after the damage has been done and it's harder to treat and cure.  That's where a large percent of those with hepc are right now.  Advanced liver disease with very few options.  I'm glad there is a heightened awareness of this disease now so more will treat before it's too late.

[meNtoby]

That's exactly what I was thinking when I was reading the drug inserts for Int and Riba... all the sides were saying "up to and including death" from that particular "complication" or additional new "disease". Or "up to and including acting on those thoughts".

Today I was wondering if anybody's doctor ever reminded them about disinfecting their OWN manicure or personal care items, during or after treatment. And those who didn't, could that patient have been re-infected accidentally by their own hand, and then been diagnosed as a "relapser"?  

Can you tell me the protocol on razors, or other items? Throw away sooner? Bleach them? How often?  I would die if I thought there was a chance that I actually spaced out and re-infected my own self.  Can you tell that I'm close to my start date for treatment?  I wake up nights with an OMG out of the clear blue sky.

Thank you for the list Alagirl, I was surprised to see Alzheimers at sixth.

cathy

[mremeet]

"Can you tell me the protocol on razors, or other items? Throw away sooner? Bleach them? How often?  I would die if I thought there was a chance that I actually spaced out and re-infected my own self."

I'm certainly no expert on "the protocol" for disinfecting things. But concentrated bleach is widely thought to be about as effective as it gets as a disinfectant both for viruses and bacteria (and Dr Dieterich on this forum did say that bleach was the best antiviral). I do recall some post/reference in the past where someone had "evidence" that even bleach in one form or another wasn't 100.00% effective at sterilizing something that might be contaminated with HCV. But I think it's safe to say that if the concentration of the bleach/water solution is high enough (especially if it's hot), it will do a very good job of sterilizing anything with contaminated blood on it. The catch is to give the bleach some time to do the job. For instance, don't just dip an earring in bleach water and then insert it right into your ear. Let it soak or allow the strong bleach solution to stay on whatever it is you want disinfected. Preferably for a couple days if you can. Normally hep C cannot survive outside of the human body for more than a few days. So to be on the safe side I would sterilize with strong bleach solution, leaving the solution in contact with the contaminated item for several days, and if possible a week (or even more). Better safe than sorry I always say.

But really, in practical terms, what I did in terms of razors etc was to simply throw them away as I progressed through treatment. As long as I was on the antiviral drugs I didn't really worry about being reinfected. Simply throw the razors away (assuming they are disposable) as you progress through treatment. And especially at the end of treatment you want to swap out your razors more regularly. And think carefully about any pointy objects (like scissors etc) that have been around you during treatment. But again, even if any of the objects did have contaminated blood on them, simply being outside of the body for more than a week at a time will kill the virus.

Lastly, as an added measure of protection, we have a certain limited form of immunity after successfully treating, especially from the genotype we once had. Our body has antibodies and "remembers" the virus that once swarmed in our blood, Its defenses will remain up for that particular genotype, and it probably makes us less likely to be re-infected by our old genotype, especially that found in our own old blood. It's not a foolproof form of protection, we can still be reinfected. But studies have shown that we do have a sort of limited, partial immunity (compared to a person who has never been infected with HCV). That partial immunity should make it even less likely to be reinfected by ourselves in the very unlikely event you would come into contact with your own infected blood before the effects of the antiviral drugs wear off.

In short, just use common sense! Good luck on your upcoming treatment...

[Xenigma]

every week before my shot I would use my toothbrush and then discard, take a shower use razor and then discard that too.  
I'm 5 weeks post tx now and still throw em out weekly.

Toothbrushes are cheap-you can get 5 in a pack
for a buck at Walgreens or the dollar store.

Disposable razors are a bit more expensive,
but I believe worth using a new one (after shot) each week on tx.

I bought cheap manicure kits at Walgreens and the dollar store.
I threw them out as well.  Better safe than sorry.

[jmjm530]

Similar to what I did on tx except never used the same razor twice.

[Xenigma]

You being a guy (even though our profile pics look the same  LOL) didn't shave as much as us females. I have a hard time believing the 4 day rule for the survival of HCV outside the body.  Remember (years ago) when someone posted that it "could" live up to 21 days in the right enviroment?...
Anyway-best to be safe.

[Mr Liver]

"I was doing some research and was shocked by the number of people in the United states now dying due to hepatitis c every year.  It seems to be a rising number."

It should be a rising number. New infections peaked in the mid to late '80s at around 260,000 new infections per year. That is 260,000 !

The study which reclassifies deaths has been posted here before several times.
http://www.news-medical.net/?id=36630s.

When you go through death certificates and you use incomplete medical histories of those included in the study of HCV mortality, the numbers become very questionable. Using the author's criteria new mortality numbers could be added if: A car driver crashes and bleeds to death before help arrives and upon autopsy they discover HCV and SLIGHTLY lower than normal platelets. In this study HCV would be listed as a contributing factor. But, was it really ? Let's say a person drinks themselves to death (which still represents almost half of all liver transplants) and is discovered to have HCV upon death. When was the HCV contracted ? It will be listed as an underlying cause or a contributing factor. But, was it really ?

This study above uses extremely flawed subjective methodologies that I wouldn't trust in a million years.

"HIV: 14,627 (does it not FLOOR you that we now have TWICE as many deaths
as there are HIV deaths, with only a FRACTION of the funding!!???) "

No, it does not floor me, nor should it floor anyone, because you are basing your statement using incomplete data. HCV does not pose a FRACTION of the potential harm HIV/AIDS could bring to this country.

To wit: Appx 4 million infected with HCV in the US, even using the 'bloated' figures above would only put the HCV mortality rate yearly at appx 5%. There are 900,000 appx infect with HIV/AIDS. Using the numbers you gave of appx 15,000 deaths per year would represent a 14% mortality rate. 5% vs 16%--its obvious which one poses the greatest threat to the country. The new infection rates of HCV are expected to be below 18,000 next year. HIV/AIDS will be over 55,000. Which one poses the greatest threat to our country is self-evident.. Funding is commensurate with the threat posed.

From the CDC:

"HIV Incidence Estimate

Incidence is the number of new HIV infections that occur during a given year.

In 2008, CDC estimated that approximately 56,300 people were newly infected with HIV in 2006 (the most recent year that data are available). Over half (53%) of these new infections occurred in gay and bisexual men. African American men and women were also strongly affected and were estimated to have an incidence rate than was 7 times greater than the incidence rate among whites. "

So here we have new infections of 56,000 this year for HIV vs appx 20,000 new infections for HCV and this number will rapidly decline in a few years).

So again, which poses the most threat to our country ?

HCV is NOT an epidemic. It is an epidemic that WAS.

"Liver disease was in the top fifteen causes of death in the US in 2006.  Actually, I think it was in the top twelve."  

HCV as the cause of death wouldn't even make the top 40. Liver disease includes all cancers, alcoholic hepatitis deaths, poisonings, along with a myriad of others liver diseases.

If you have HCV and smoke you should be much more concerned with this:
"Health Effects of Smoking

Each year, a staggering 440,000 people die in the US from tobacco use. Nearly 1 of every 5 deaths is related to smoking. Cigarettes kill more Americans than alcohol, car accidents, suicide, AIDS, homicide, and illegal drugs combined. "

When dealing with these types of numbers you have to ask yourself  is the figure being expressed as a percentage of the population as a whole ,or is it just a number with no context ?

Mr Liver
mathmetician

[jmjm530]

Thanks for the perspective. As suggested, I would imagine that alcoholism and heavy drinking factor significantly into these results, as well as probably the fact that many of these people didn't even know they had Hep C -- therefore no monitoring or choice of being treated.

One inference --- that one should treat early -- doesn't follow, at least for me. I certainly think people should treat whenever they want to, but I see "watchful waiting" as a very reasonable strategy as long as one monitors the liver carefully and makes appropriate lifestyle choices.

-- Jim

[CoWriter]

The 14,627 deaths is the CDC's estimate.  But the "Death Totals by State including the District of Columbia Compiled from each State's Department of Public Health" is only 10,472.  And most states reported huge decreases in yearly deaths.  

http://fairfoundation.org/states/hiv-aids_deaths_by_state.htm


The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean.

Thanks to the success of HIV meds, HIV patients now have a NORMAL life expectancy.....that's 77.8 years.   We can't say the same for Hep C patients.

There are 3,538 clinical trials for HIV/Aids.....but only 571 for Hepatitis C (many involving HIV/HCV co-infection).

The NIH is spending $3,052 on each citizen estimated as having HIV/AIDS....but they  spend only $20 on each HCV patient.  

Let's not spend it all in the same place.



Source:
http://fairfoundation.org/news_letter/2008/02june/000newsletter.htm

[rita863]

wait i didnt know that i should be throwing away razors and toothbrushes while tx.  i use my toothbrush for about amonth and then get a new one, i use disposable razors and used them about three times aweek and then throw them away.  Am i doing something wrong?

peace
rita

[Trinity4]

I don't think so rita, I've never been advised to do so.  It's isn't listed on any of the websites such as janis7hepc.com and my doctor hasn't mentioned anything about it either.  I think there are those that just take extra precautions for vaious reasons of their own. I've heard many say you can never be too careful, but I can't preoccupy myself with those kinds of things.  If it were absolutely necessary, it would be well documented and strongly advised by the "renowned specialists" across the country.  If we could ever get on the expert forum, it would be a great question to ask.
Trinity

[CockSparrow]

You are not going to reinfect your self using the same razor or tooth brush during Tx.
1. You are taking a strong anti hcv drug which will kill it even if you did reinfect yourself
2. This could only be an issue when you are close to UND and then re infect yourself after you became UND.
3. The virus doesnt live long enough outside the body to do that
4. You are taking IFN for a long time after you become UND.
5. no one would svr if this was the case.

CS

[Mr Liver]

"Thanks to the success of HIV meds, HIV patients now have a NORMAL life expectancy.....that's 77.8 years.   We can't say the same for Hep C patients. "

This is not factually correct. HIV patients have a shorter than average lifespan. Much depends on age, time of infection, start of antiretroviral therapy, and means of acquisiton.This just came out in Lancet:

"Life expectancy for HIV positive people is still not normal. Even under the best scenarios, he wrote "about 10 years is shaved off a normal lifespan," and starting treatment after severe immune deficiency has set in shaves off an extra 10-20 years. "--
Another reason why more money is given to HIV/AIDS research.
http://www.cdc.gov/hiv/topics/surveillance/basic.htm#incidence

Perhaps you can tell me what the life expectancy is for someone with HCV since you brought it up ?

The fact that people with HIV in the US live longer now only increases the burden of the healthcare costs associated with the treatment, care, and housing for those infected. They take expensive meds and never stop until they die. They are presumed to be disabled upon diagnosis and most will have to rely on government funds for their medical care, prescription costs, and housing. Thus the cost to society in dollars is getting larger the longer they live. But this pales in comparison to what we could lose if the global HIV/AIDS rates do not start coming down. Yet another reason for higher funding for HIV/AIDS.

"There are 3,538 clinical trials for HIV/Aids.....but only 571 for Hepatitis C (many involving HIV/HCV co-infection). "

This is nonsense and intellectually dishonest. How come you point out that many HCV studies are co-infection studies and not disclose that many more HIV/AIDS trials are for co-infections, as well ? Go through that list and delete all HIV trials that are completed,terminated,not recruiting, suspended,ancillary studies, and for co-infection and you won't have that many trials for HIV/AIDS left. And if you go through the remainder and delete all that are not trials for new drugs there will only be a handful left.

Because of its global prevalence and ease of infection  HIV/AIDS poses a potentially serious national security issue. HCV poses no threat to our national security at all nor will it as a result of global infections (which will follow a similar decline as the US) . Let's face it-HCV is hard to get. HIV/AIDS by comparison has many more transmisson vectors which make the spread of the disease harder to control. Furthermore, funding in the US for HIV/AIDS research is not just based on the needs of HIV/AIDS patients in the US, but the ENTIRE WORLD, as  the genesis of any threat to our national security would undoubtedly be a result of the pandemic nature of HCV, not as a result of US infections. We face no such danger from HCV. Another reason for the higher funding of HIV/AIDS research.
http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0030171&ct=1

The number of new HCV infections (in the US ) are expected to be below 18,000 next year. HIV/AIDS will be over 55,000. Which one poses the greatest threat to our country is self-evident.. Funding is commensurate with the threat posed, and this is reflected in research dollars.  http://www.cdc.gov/hiv/topics/surveillance/basic.htm#incidence



"The 14,627 deaths is the CDC's estimate.  But the "Death Totals by State including the District of Columbia Compiled from each State's Department of Public Health" is only 10,472. "

Only ? OK, let's use 10,472 instead of the CDC's estimate of appx 15,000  HIV/AIDS deaths during a year's time. With appx 1 million infected HIV/AIDS individuals in the US this would be about a 10% mortality rate. HCV has only an appx mortality rate of 1%-5%  This would seem to run counter to the point I think you are trying to make.(*However,If you look closely at the data you cited you will see that the totals by state  are not all reported in the SAME year ). I think with a mortality rate 3X higher than HCV it would be obvious which one demands the most diligence, and research dollars, on the part of the government.

"The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean."

I'm not sure why you posted this. It is meaningless unless it is given in some sort of context.

"The NIH is spending $3,052 on each citizen estimated as having HIV/AIDS....but they  spend only $20 on each HCV patient. "

This should be expected and illustrates my point about which disease poses the greatest threat to the US. Again you make it sound as if these research dollars were soley for the benefit of infected US citizens which is not true. It is for the benefit of ALL US citizens when viewed from a standpoint of national security.
Contracting HCV is HARD compared to HIV/AIDS. New infections of HIV/AIDS continue to rise globally while new infections of HCV continue to plummet (and for HCV this trend will continue.)  " In 2008, CDC estimated that approximately 56,300 people were newly infected with HIV in 2006 ." New infections of HCV in the same year was less than 30,000.
http://www.cdc.gov/hiv/topics/surveillance/basic.htm#incidence

If another penny wasn't spent on HCV it still would be virtually non-existent in the US in 20-25 years. And I mean not one red cent for research, prevention, or tx.  If you did the same to HIV/AIDS, it would eventually decimate this country. Just one more reason for the increased funding as this illustrates how much more HIV/AIDS is a threat over HCV due to its virulent nature.

In the mid-80's new HCV infections peaked at appx 240,000 per year. Last year there were appx 25,000 new infections. Why someone would expect the gov't to invest large sums of taxpayers dollars for a disease that is going away through attrition is beyond me.

Mr Liver
mathmetician and dissecter of half-truths

[CoWriter]

Besides a "mathmetician", you wouldn't happen to be an Aids advocate, would you?

[alagirl]

Not to split hairs, but I think that most of the data I've seen states that overall about 4 million Americans have HCV antibodies, with about 2.7 to 3.2 million chronic HCV patients.  I presume the others are those who had acute HCV and cleared on their own.  What I'm not at all sure of is where they put the SVR's, or if the SVR's are supposed to be included in that numbers difference also.

I do see what you're saying about HIV patients having a larger percentage of deaths for their overall population, but I don't think that the HCV patients have an inconsequential number comparitively.  And some of the trends in HCV deaths in the past few years (like the fact that they have risen in the age 45 - 54, and disproportionately among men), are a little disturbing.

Also, I think there has been a surge in substance abuse among all populations.  College students are using hard drugs in really significant numbers.  And while I don't know that we'll get back to the transmission levels we had when HCV was transmitted via transfusions, I am afraid that there are a lot of people, many of them teenagers, who are going to be infecting themselves over the next few years, causing the new infection rate to go up.  At the same time, this is about the time that we are going to see a lot more deaths from people who were infected tens of years ago.

http://www.medicalnewstoday.com/articles/65347.php

I don't really have a problem with classifying a death in which Hepatitis C was a contributing factor as a hep c death (or with the fact that it might sit on both the HCV and the HIV lists).  If HCV has hastened the premature nature of someone's death, then I think its fair to add that death to the HCV list - because if that person was not suffering from HCV, they would have died on a later date.  Even in the case of an alcoholic, his liver would have lasted longer if not so compromised by HCV.  If it cannot be established that HCV was a contributing factor in actually CAUSING the death, then I think it shouldn't go on the HCV list.  And of course even then we have so many people who die without an autopsy and also without ever knowing they were HCV positive and that HCV was a contributing factor to their death, that it seems to me that we really are underestimating the number of HCV deaths in all probability.

As meds for HIV continue to become more refined, we are going to see more and more of what we are seeing now, co-infected HIV/HCV folks who actually die more from complications brought on by HCV than from the actual HIV (except in that the HIV weakened their immune system to the point that they were more susceptible to the ravages of HCV).  Again though, for me, the decision on whether HCV also receives attribution for the death depends on how clearly it can be determined whether or not HCV contributed to the death.

http://www.medpagetoday.com/InfectiousDisease/Hepatitis/tb/8890

"Death certificates mentioning hepatitis C as either the underlying cause of death or as a contributing cause of death were compared to medical records with hepatitis C listed as a discharge diagnosis, as a part of the patient's history, or as a positive laboratory test. Using MCOD data alone would have only captured 18% of the total number of estimated deaths.[26] Another study utilizing Kaiser Permanente Medical Care Program data for 2000 also found hepatitis C to be underreported on death certificates. Only 64% of deaths attributed to hepatitis C in the Kaiser database listed hepatitis C as a cause of death on the corresponding death certificate.[27] Applying results of these validation studies to data from 2004 suggests that between 12,000 and 41,000 hepatitis C-related deaths occurred, consistent with other published estimates.[2]

An important but infrequently recognized complexity in the analysis of MCOD data pertains to the translation of entity axis codes to record axis codes and may result in an underestimation of cause-specific mortality. Although HIV and hepatitis C are often both listed in the entity axis, they are frequently combined into a single code for HIV disease in the record axis. For example, it is possible for ICD-10 codes K74.6 (other and unspecified cirrhosis of liver), B24 (unspecified HIV disease), and B18.2 (chronic viral hepatitis C) to be listed separately in the entity axis. After processing and translating the entity axis codes, the record axis may only contain B20.3 (HIV disease resulting in other viral infections) and K74.6, with B20.3 listed as the underlying cause of death. This phenomenon could have lead to the exclusion of numerous deaths strongly related to hepatitis C if ICD codes in the entity axis had not been taken into account."

[alagirl]

If another penny wasn't spent on HCV it still would be virtually non-existent in the US in 20-25 years.
---------------------------------------------------------------------------------------
How do you figure?

[Xenigma]

This is what ticks me off...
(I've posted this before-the bill was initially turned down I believe in 2002)

July 30, 2008
President Bush Signs H.R. 5501, the Tom Lantos and Henry J. Hyde United States Global Leadership Against HIV/AIDS, Tuberculosis and Malaria Reauthorization Act of 2008--

This bill will help us combat the diseases that complicate HIV/AIDS.

It commits $4 billion to fight tuberculosis --
which is the leading killer of Africans living with HIV.

The bill also pledges an additional $5 billion to our Malaria Initiative. Through this Initiative, we've provided malaria treatment and prevention services to more than 25 million people. We've dramatically reduced malaria in many parts of Africa.

The additional funds in this bill will help us save even more lives.

http://www.whitehouse.gov/news/releases/2008/07/20080730-12.html

This is billions of dollars we're talking here...
What about HCV?  I just don't get it.  
I guess we need to help Africa before we help the people of the US or
help people sticken with Hepatitis.  In another decade the SH!T will hit the fan.

[alagirl]

Truly, I would LOVE to believe that HCV would no longer be a going and spreading concern in 20 years.  But I don't see how its possible, and I haven't read any research to that effect - if you have some, I would be interested in it though.

HIV also puts on the lists of its deaths, people who are coinfected and died at the time they did largely due to the contributing factors of HCV.  So I guess I still feel kind of valid in saying that we have a serious health problem.

And honestly, the HIV community and physicians aren't just a little bit worried about HCV, they are VERY worried about HCV.  This is NOT an either/or situation here.  HCV needs more money for treatment and research for the sake of both communities.  HCV contributes prominently to the death toll of those with HIV.

http://www.thebody.com/content/art12281.html#kills

Additionally, I hardly think that only 1 - 5% of those with HCV will die.  It is higher than that.  1 - 5% will have liver cancer.  A percentage will have liver failure, a percentage will have kidney failure.  All of those percentages don't add up to 1 - 5%

I don't understand, honestly, why your tendency is to minimize this when there are doctors and researchers both here in the U.S., and in several other countries calling it an epidemic.  Personally, I think if the U.S. is going to get it under control, this is the time to do it.

[Mr Liver]

I am not minimizing anything. I am speaking factually. I have HCV, am on the tp list, and suffer from decompensation. I have no reason in the world to minimize HCV or its impact. I speak to facts. Many people have a hard time accepting the truth especially when they haven't heard it before. There are tons of epidemiological studies that chronicle the rise and  fall of HCV in the US. It is on its way out. The doctors and researchers that you mentioned are a handful who are misapplying the word "epidemic". They should refer to the rising deaths and cancer as a surge , and completely expected. A breakout widespread infection is an epidemic. In the mid-80's new HCV infections peaked at appx 240,000 per year. THAT was an epidemic. Last year there were appx 25,000 new infections. You call that an epidemic ? Funny, but I always thought in an epidemic the numbers went UP, not DOWN.

"Additionally, I hardly think that only 1 - 5% of those with HCV will die.  It is higher than that.  1 - 5% will have liver cancer.  A percentage will have liver failure, a percentage will have kidney failure.  All of those percentages don't add up to 1 - 5% "
First off, not everybody dies from HCC who gets it. In appx 20% of the cases the patient lives. If someone dies of kidney failure due to liver disease, trust me the doctors can put two and two together and figure it out. HCV has been listed for over a decade as the cause of death if the disease caused other manifestations that eventually killed the patient. They wouldn't list the death as 'kidney failure". So, tell me just what those percentages add up to ?
Please back with a reference.

"There are expected to be around 38,000/40,000, new deaths due to hepatitis c in 2010 (if not more)"

This is to be expected as well. I covered this already.The epidemiology of HCV is an open book. References, articles, and studies all detail the course HCV will run in the US, and WHY. Those numbers above don't mean anything more than the cycling through of those who primarily contracted this disease in the 70's and 80's via IVDU -and transfusions to a much lesser degree. More people infected during a time period will be reflected by more deaths as they age. Nothing unusual about that and points to the coming day when IVDU will be the primary source of new infections in this country.

" Personally, I think if the U.S. is going to get it under control, this is the time to do it. "

What does 240,000 new infections in the mid-80's vs. 18,000 new infections today mean to you ? To most people it would be very apparent in light of those facts that we DO have it under control as a nation.


"And honestly, the HIV community and physicians aren't just a little bit worried about HCV, they are VERY worried about HCV.  This is NOT an either/or situation here.  HCV needs more money for treatment and research for the sake of both communities.  HCV contributes prominently to the death toll of those with HIV".

You are overstating the case. Co-infection has much more meaning when it comes to tx. But failing HCV tx doesn't mean you are going to die if you have HIV. Please provide a reference to back up your assertion that HCV plays a prominent role in HIV mortality rates. I assume you have one to make that statement.--ML

"However, multivariate analyses adjusting for baseline CD4+ cell count and number of weeks on HAART showed no statistically significant difference in survival time between HCV/HIV co-infected and HIV only patients (p= 0.56). Baseline CD4+ cells and length of time on HAART were both significant predictors of survival.CONCLUSIONS: In a multivariate analysis correcting for baseline CD4+ cell count and HAART use, survival times between HIV patients with and without HCV co-infection were found to be comparable. HAART was the strongest predictor of survival, suggesting treatment is more important to survival than co-infection with HCV"--http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102263696.html

"HIV also puts on the lists of its deaths, people who are coinfected and died at the time they did largely due to the contributing factors of HCV." --- I would love to see this list you refer to. Please provide a reference.

"A percentage will have liver failure, a percentage will have kidney failure.  All of those percentages don't add up to 1 - 5% "

So, if a patient has fulminant liver disease, or failing kidneys you don't think the doctors or medical examiners can figure out what the cause of death was ? C'mon you can't be serious.

It would benefit you to actually read all the way through the references I posted. Everything that you have brought up is addressed in those studies.

Mr Liver

[Mr Liver]

"Besides a "mathmetician", you wouldn't happen to be an Aids advocate, would you?"

Why would posting facts make me an AIDS activist ?  I like the truth, don't you ? Actually, an AIDS advocate would never go where I went in these postings.

I'm an advocate for HCV and I'm proud to say I've done alot of work in our city and state as one. When I give a speech or presentation it's for HCV, not AIDS. That said, I do have a good relationship with local and nat'l AIDS orgs which works to the benefit of everyone with HCV. I'm sure you have noticed that AIDS orgs are well organized . Besides great organizational skills, they have great expertise in fundraising, awareness, and most importantly for HCV, great connections in the public relations department. They have established worldwide networks that were started from the grass roots level. It would be foolish not to tap into those type of resources and expertise. Even before co-infection was an issue the AIDS orgs helped the local HCV orgs to obtain grants, help put various support systems in place, and helped immensely with fundraising. So, well I have worked closely with those with HIV/AIDS I have been, and will continue to be, an advocate for HCV.

In the US new HCV infections have dropped precipitously since 1990. This trend continues and will do so even more in the future. However, there is still a need for HCV advocacy in our prisons, awareness programs for IVDU, and testing.  It doesn't have to be an epidemic to care for someone with HCV.

Mr Liver

[cruelworld]

i posted a similar chart concerning death statistics about a year ago.
i  compiled it in this   'deaths per day'    format as all the statistics are
difficult to compare and this was easiest for me to understand.
i didnt compare it exactly with alagirls chart  but at a quick glance they look very similar and of course the numbers vary from year to year and from source to source.

DEATHS PER DAY IN AMERICA

    DISEASES

heart        2000
cancer       1000
stroke       400
lung         350
                 250              accidents etc. (see below)              
diabetes         200
alzheimers        200
flu                 200

kidneys      150                
blood        100   (bacterial septicemia)

liver      70   all liver problems  (alcohol, viral, auto immune, toxicity
liver      45           all hepatitis,  (a b c d e f g)
liver      25    hep c only  

high blood pressure        60
aids                       45 this number may be lower now


ACCIDENTS ETC.  (250  total)

motor vehicles  115
suicide   80
murder    50
fire      13

on the job    10
drownings  9
iraq war   3
ladders    1


the funny thing is, i interpreted it exactly the opposite as alagirl.
why do we so feverishly destroy ourselves with combo therapy
but fail to stay up on our flu vaccines?  (much greater chance of death) why do we endure deadly chemotherapy but continue to smoke? (decidedly deadlier)  why do we jump at the chance for a crappy 50% cure from hep c but at the same time continue to overeat and be sedentary? (leading to far deadlier problems) not to mention the fact that if logic was applied none of us treaters would ever get in a car again!!!!!!!!!!
i dont know the answer to these questions but i looked at those death statistics last year in the middle of my treatment and was very much happy to see that hepc wasnt nearly as deadly as i had
imagined it to be.  the priorities that we assign to the efforts of avoiding death are far out of line with the real world statistical chances
for those deaths in my opinion.  

i am glad i treated now that its over but i presently put much more effort in avoidance or preventative measures on the items at the top of the list than i ever did before.

yea, all of this is all an oversimplfied
'drive by' picture of this issue but still good food for thought.


"now lets go have a beer"

[Mr Liver]

"Not to split hairs, but I think that most of the data I've seen states that overall about 4 million Americans have HCV antibodies, with about 2.7 to 3.2 million chronic HCV patients."

That IS splitting hairs. I mean come on, 3.2 million vs my stated 4 million ?


The accepted infection rate in the US is 1.8%. I'm sure you know this already as it is the number most used in the data.

The US population is 305,000,000 people. This would indicate 5.5 million citizens who were exposed to HCV. Deduct those who had spontaneous resolution, which varies by study with an avg of appx 25% and you have 4.1 million current infections. But, if you want to use the lower number go ahead. However, it works against the point you tried to make in your first post.
Mr Liver

[moahunter]

"the funny thing is, i interpreted it exactly the opposite as alagirl.
why do we so feverishly destroy ourselves with combo therapy
but fail to stay up on our vaccine?"
I think flu is often the death blow, but not the cause of death, whereas Hep C is often the cause, but not the death blow. So that's why we do worry about vaccines for seniors as the death blow may hit home soon. With Hep C, I have no doubt that the level of deaths is massivley undereported, for a variety of reasons (including stigma, but primiarily as it is rarely the ultimate knock out that wipes people out, but it is the thing that softened them up for that knock out blow).

I find the numbers Alagirl posted staggering. Think how many events there are, that raise money, and support for breast cancer? Yet it is only about 3 times as prevalent as Hep C. But Hep C is an infectious disease - in theory, there is no reason why anyone should get it.

I am thinking more and more that the saying "you are more likely to die with Hep C, not from Hep C", is highly misleading, in respect of those who don't treat, don't respond or relapse. It doesn't match the recent research that seems to clearly spell out that serious liver disease is inevitable. IMO this disease is slowly killing, or at a minimum wearing them out, everyone who has it. Mind you, we are all dieing a little day by day as we age, so there is always some "perspective", but I think this condition should not be trivialised the way it often is by doctors. I have one dead cousin from Hep C (died in his early 40's, although lifestyle contributed), many people might get lucky and live longer than that, but many who contract young, won't as well.

[Mr Liver]

" but I see "watchful waiting" as a very reasonable strategy"

I agree as you know I am also a big fan of watchful waiting, even more so now in light of recent drug successes within the last few years. HCV has to be the most over treated disease of our time . With earlier testing being implemented in tx algorithms based on trial results this trend is slowly changing , with an emphasis on 'slowly'.  Hopefully in the near future more refined predictors such as genetic markers can help further this reversal of over treatment  reducing by weeks or months the time spent on tx unneccessarily.  But, for now it still remains a grossly over treated disease in modern countries.

I think people who treat at stage 0 or 1 do so for a myriad of reasons but most of those decisions  are not based upon science, nor medical necessity. A very large number of those in this group treat simply because their doctor advises them to. I don't find fault with anyone who listens to their doctor as we have to put some faith in the professionals that should know what is best for us, according to our own personal situation.  I do find fault though with the 'treat all mentality' that still pervades the medical practioner's thinking especially outside of the larger cities. Their rush to treat immediately in all discovered infections is inexcusable and irresponsible, and does not put the concerns of the patient first.

I think I've strayed off topic a bit and didn't mean to ramble on.
Thanks for your reply to my post.
ML


cruelworld has some data compiled in his post that is well organized and offers great perspective

[jmjm530]

Not a "ramble" to me --  and you didn't "stray" because very shortly after "Ala''s" initial post, the argument was made by more than one poster,  tying early treatment to the presented statistics.

Ironically, I've always felt that one of the "myriad of reasons" people treat early is because of the stigma of having Hep C,  as opposed to physical manifestations of  the disease itself.

Anecdotally, this has been confirmed here in previous threads where I have made this same suggestion and at least several posters confirmed that the societal stigma was an important part of their treatment decision. I'm certaiinly not judging anyone's reason for treating, but personally think it's unfortunate that such a powerful stigma exists and can affect the treatment decision.

-- Jim

[Mr Liver]

This list is extremely illustrative of some of the points I was trying to make concerning disease burden and impact. The misplaced health priorities we see in the population as a whole is an interesting phenomenon. Ignorance, bad advice, apathy, selfishness, phobias, embarrassment, incorrect information, fear of the unknown, etc, etc, etc. could be some of the reasons for misplaced priorities but how prominently any of these or other reasons figure in tx decisions would be very interesting to know.  Thanks again for the post.
ML

[Mr Liver]

'at least several posters confirmed that the societal stigma was an important part of their treatment decision'

I have heard this one as well. It would be interesting to know if the people who base their tx decision on stigma have any particular common demographic that would connect them in some way ? Could they possibly be linked by socio-economic factors ? Or perhaps their physical geographical locations ? For example, small towns can be problematic when the discussion turns to exotic diseases. And the longer you are known to be infected the higher the odds that the folks in the next town over will even know about you. ;)  

Here's one that is bound to thrill some. I firmly believe there is a certain small subset who treat because they desire to have "victim status". Playing the victim is very appealing to some---it makes people take more note of them--- they receive more attention and compassion  from those around them than they ever did before they were on tx. People are nicer and more forgiving of you. In short, it is a way to become the center of attention for awhile. I think some who treat a ridiculous amount of times with the same result may have victimhood as the primary goal of tx. It's that or they are just flat out stupid.

Don't you ever give someone in this small group the impression in the slightest that you are diminishing anything to do with HCV.  They will most assuredly take it as an attack upon their status as a victim and it is usually at this point that they will  turn mean and nasty. If you happen to knock one of these types off of their pedestal of victimhood for even just a moment all hell can break loose. As I said this is a very small subset that I have observed over the last nine years. I've never actually discussed this online before so I really don't know if others here have ever have observed this behavior online or perhaps I unknowingly became a paranoid delusional a decade ago.

Mr Liver
wannabe psychologist

[alagirl]

In hindsight, I do wish I hadn't made a mortality comparison with HIV, because certainly, HIV is a going concern and I have and have had several friends with HIV.  I didn't want to set up some type of ours or theirs thing with HIV.  Both diseases need education and funding because they share both co-disease, and also, one very large at-risk group for sharing both diseases.  Research done for the co-disease help generally as they usually use an HCV mono-infected for the control group (although most of the questions are HIV oriented).  That whole national security thing, from a point of view of the security of the U.S. being at stake wasn't really persuasive to me.  We have real problems here with health care, gas prices, housing - that I think are very important. And any gains we make in diseases will eventually filter to the third world (although many times much more slowly than we'd like).  But we need to take care of the people here with HCV and HIV.

I feel strongly that HCV needs more awareness and attention, and also that we don't have the first clue as to how many new cases we truly have every year, nor do we "catch" and document many of the deaths to which HCV contributed.  And no, I don't think that necessarily HCV goes down on the death certificate.  Liver disease, sure.  They catch that.  Kidney failure.  I think they probably miss it a lot. I think there are wide differences in procedure and diligence dependent upon who is filling them out, where.  I can't see HCV dying out or being eradicated without serious attention to the IVDU's.  

I'm not trying to be divisive about this.  Truly.  I respect your thoughts on various issues, and you have a lot of wisdom and knowledge about this disease.  The reason I pointed out numbers, to me, isn't splitting hairs, I'm just trying to get a handle on a prevalence of mortality from the chronic disease.  From my perspective, hepatitis c that has  resolved on its own in the four to twelve weeks following exposure isn't an issue.  It's true that the antibodies remain, but its not a long term problem.

So in order to determine prevalence of people who die from chronic HCV when compared to mortality rates from HIV, I used the 2.7 to 3.2 million figure, since it was the number given for people with chronic HCV (a percentage of which will then become SVR with treatment - they never really address how they factor that into the overall prevalence number (probably, they just never consider any of us to be cured once we've been exposed).  Certainly one of the difficulties with comparing true prevalence with HIV IS that we have a treatment that works in up to 50% (or more) of us, harsh though it may be.

Still though, that's 800,000 to 1.3 million folks less to base a statistic off of when you're talking about morbidity rates - (whether you use the 4 - 5 million overall exposed rate, or the 2.7 to 3.2 chronically infected rate) and when you are talking in those numbers, with the difference being a million people or so, you are changing your base group by as much as 25% or so before you determine what percentage mortality rate you have in that base group.  To me, that's statistically significant - which is the only reason I pointed it out.  So say you go with 4.5 million as the total exposed and 3 million as the number who didn't knock it out of their system by themselves and who are (or have been) chronically ill.  So you would base your mortality rate (in my mind, in order to compare apples to apples), on how many deaths you had out of a group of 300,000, and then that would be your mortality rate.

" Last year there were appx 25,000 new infections. You call that an epidemic ? Funny, but I always thought in an epidemic the numbers went UP, not DOWN."

I didn't personally call it an epidemic.  But many doctors have (and pandemic as well), and I can see their point.  I do understand the numbers on this.  The slew of earlier cases increased by year, mostly due to transfusions, peaking somewhere in the mid two hundred thousands during the eighties.  Since that time, the number of new cases has appeared to fall yearly.  I also understand that it is only natural that given the lag time, those infected during the eighties are just at the point, beginning now, and running for the next ten or fifteen years, where they are going to be facing the worst ravages of their disease - so naturally - we will see skyrocketing deaths that are actually related to those infections from the eighties.

An article that talked about the using the cdc's surveillance system said there were 30,000 new cases last year, and if so, that would constitute a rise in the number of new cases already.

Also, the cdc noted that after several years of decline, the rate of new cases went up in 2006, and until they receive info for additional years, they don't know whether its the beginning of a surge in new cases, or what:

Its been stated that IVDU's have rampant HCV rates,

from 16 - 42% here:
http://www.journals.uchicago.edu/doi/full/10.1086/499960

50 - 70% - here (after 3 years of injecting):
http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s1266654.htm
Purportedly, the rate of HIV among IVDU's, according to the site just above, used to be about 60% and has now dropped to 30%  --  This confused me not just a little bit, but apparently HCV is more infectious in a syringe, and the HIV virus is more delicate.  HCV is hardier, and can't be so easily washed away just by rinsing well with water several times purportedly (in fact people transmit by sharing the water they use, sharing their cotton, etc).

And there is concern about the number of new cases that might be going by unseen in IVDU's:

http://www.journals.uchicago.edu/doi/full/10.1086/499960?cookieSet=1#rf6
"HCV infections in IDUs, however, are rarely symptomatic, and probably <1% come to medical attention and are diagnosed [8, 9]. Thus, the true incidence of HCV infection among IDUs may be even less accurately ascertained by our surveillance system than the prevalence. The official estimates of these numbers tell us about infections in those of us who are stably housed, have nothing to fear from the criminal justice system, and go to the doctor when sick, but tell us little about those at the core of the epidemic."

cont.

[alagirl]

I do think though, that the new infections are rising, or are just about to rise and a) that they are going to continue to increase and that b) this is due to IVDU's - with this group frequently having a higher prevalence of HCV than they do HIV.  There isn't any funding to treat these folks, and even needle exchange programs and info about how to keep from getting infected is hard to come by except in some larger urban areas.  Its really difficult for me to see how that spread is slowed - most of the time, these cases don't show up for so long after the fact.  A great deal of funding was cut from any programs that would have helped with this.  The prison system would be an excellent place to treat folks and to get them into ************** programs.  But I think the percentage that get HCV tx in prison is in the low single digits (someone can let me know if I'm wrong about that, but I think its pretty scarce).

I sometimes wonder if some of the "new cases" were found much more quickly, and closer to the time when the transfusions were occurring because perhaps a larger portion of the people who were infected in that manner were also were still sick with whatever had caused them to be transfused in the first place.  Physicians would have screened those who had a history of transfusions after the news reached them about HCV, and more cases would be caught via testing because these people were sick more often and in the hospital and it would come up in screening.  I'm not saying that happened in every case, but I'll bet it happened a lot.  

A recent study of younger chronic people infected showed that 96% of them wouldn't qualify for tx for various reasons even if they WERE diagnosed at an early stage in their disease.  These included substance abuse (including alcohol), and depression unless the medical protocol starts to screen in more people.
http://www.journals.uchicago.edu/doi/abs/10.1086/499951

On the fact that I think that the estimate that HCV contributes to or hastens the deaths of more than 1 - 5% of people infected with the disease, the numbers just don't add up to me,

Studies show you're twice as likely to have end stage renal disease if you're HCV positive.  I don't know how many people die each year of end stage renal disease with HCV factoring in, but I'm sure it happens.
http://archinte.ama-assn.org/cgi/content/abstract/167/12/1271

If we accept that 20 - 25% of people with chronic HCV get cirrhosis eventually, and 1 - 5% of those folks get hcc, then some of the rest of that 20% go through end stage liver disease.  And some percentage of those folks don't make it through ESLD.  Again, I don't have the precise numbers, I'm just saying, if they are already saying that 1 - 5% get cancer, and we know that there are other causes of death for people with HCV (heart disease, and HIV co-infection for instance), then its difficult to see how there is only a 1 - 5% mortality rate.

The co-infection study you gave me was five or six years old.  There are newer studies and doctors working with HIV are anecdotally reporting it as well.  In the study you gave me though, they said: "Deaths per 100 person-years of observation were higher in HIV/HCV co-infected patients (3.4 vs 1.7/100 person-years; p = 0.008)."  But then went on to say they thought the number of deaths was "comparable" to those who had HIV alone.  Clearly though, even in your article co-infected patients died more often.

http://www.medicalnewstoday.com/articles/42006.php
"People living with both HIV and hepatitis C are more likely to develop liver disease and have a higher mortality rate than those living with HIV or HCV, according to a study published in the April issue of the American Journal of Gastroenterology,"

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102270989.html
In the model also controlling for injection drug use, the comparable hazard ratio was 1.28 (95% CI 1.13 to 1.45, p0.0001).CONCLUSIONS: Controlling for numerous potentially confounding factors, HCV seropositivity was independently associated with increased risk of death in a large cohort of HAART-treated HIV-infected veterans. Given the success of HAART in extending the lives of HIV patients, HCV has become an important predictor of mortality in the HIV-infected population.

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102270989.html
Liver fibrosis on account of chronic hepatitis C is more severe in HIV-positive than HIV-negative patients despite antiretroviral therapy. Journal of Viral Hepatitis 15(6): 427-433. June 2008.

http://www.hivandhepatitis.com/hiv_hcv_co_inf/2008/012908_a.html
A growing body of research indicates that HIV-HCV coinfected patients tend to experience more rapid liver disease progression compared with HCV monoinfected individuals

There was another article, but I haven't found it again yet, where they asked doctors treating those with HIV to write in with the most common causes of mortality that they were currently seeing in their clinic populations (this was also a very recent deal), and the physicians said that mortality from liver disease was now a very large concern in their practice.

I personally believe that the only way we will see eradication of this virus in the future is if we come up with a vaccine, a much more effective and better tolerated treatment program, and/or better screening and treatment (both medical and addiction), for at-risk populations.

[alagirl]

here's the thing I don't understand about not treating early.  And I keep asking for someone to explain their philosophy on it to me so I can get their point of view.  Why would you wait to treat and let HCV work on your body and potentially give you RA and other extra-hepatic issues, and risk damaging your kidneys as well as compromise your liver, when you are probably going to have to treat sometime in the future, and there isn't anything coming down the pike that isn't used with interferon.

So if you can't avoid the interferon anyway, why not treat before you have all the damage - then at least you only have to worry about the damage the interferon does, instead of the issues the disease caused as well as eventual damage from interferon and the risk the tx doesn't work later and you run out of time and end up with ESLD because you don't have time to run another course with a different co-drug, or stronger doses.

Obviously, as an acute I didn't have a huge decision to make on this one, but what is the reasoning process on that.  Are you just bargaining that statistically, you wouldn't be one of the percentage who has damage serious enough to shorten your lifespan - so you'll just never have to treat, or?

[Trish77]

"HCV poses no threat to our national security at all nor will it as a result of global infections (which will follow a similar decline as the US) . Let's face it-HCV is hard to get. HIV/AIDS by comparison has many more transmisson vectors which make the spread of the disease harder to control."

I wouldn't say that HCV poses NO threat to national security, if by that you mean the overall cost from the impact of the disease, either due to medical treatment costs or cost of transmitting the disease to others.  

In the following study carried out and published here in Canada in 2002,

http://www.phac-aspc.gc.ca/hepc/pubs/hepc2002/pdf/hepc2002-eng.pdf

it was determined that nearly 2 out of every 100 immigrants come into our country with HCV (.018 to be precise).  The highest incidences of these were, respectively, from the Middle East (4.8 % prevalence in country of origin), Sub Saharan Africa (3.8%) and then Southeast Asia (3.2%).  I do know that the immigrant population is now considered a risk factor all on it's own for HCV here in Canada and particularly if from one of the countries where it is  known to be more prevalent.  

I can't imagine it's any different in the U.S. among the immigrant population.  

When you have nearly 2% of your immigrant population arriving with HCV, that's an issue.  I have no figures on the percentage of the immigrant population that arrives with HIV and I'm not saying that HCV's impact is higher.  I'm saying I think it's misleading to say that HCV poses NO threat to the U.S. from a global influence.  I know our Health Units here certainly pay attention to this within the immigrant population and I certainly hope the U.S. does the same.

Trish

[jmjm530]

The philosphy of not treating right away is tied into something  called "watch and wait" and has been discussed extensively here in the past.

I will be very brief as typing with one hand due to tennis elbow which btw is not an extra-hepatatic issue nor caused by interefeon :)

To over simplify, someone may choose to watch and wait if they determine the risks of treatment outweigh the rewards of a chance (50 per cent with geno 1s) of SVR. Just read the archives here or some of the polls and u will see that most felt no better after tx and many felt worst.

As to future treatments, yes they may have interferon for the next ten years or so but that interferon exposure may be half or less and the odds of success may be greater.

Anyway, hopefully Mr. Liver -- or anyone else who can type with two hands ) -- can elaborate.

-- Jim

[Trinity4]

I'm with you on treating early.  Eventually, the person will need to treat at some point.  Liver damage will progress, despite close monitoring.  Some do not progress as fast as others, but in most cases, left untreated over time, hepc will cause extensive liver damage.  If I had been diagnosed with stage 1, I still would have treated.  Stage 2 is next and then stage 3.  Each stage means more scarring of the liver, and it's a proven fact the more fibrosis, the harder to treat and the less chance of SVR.  There will always be those that suffer extreme side effects before and after treatment.  They are the exception not the rule.  They haven't been treating this disease long enough to know the effects of inf 20 -30 years down the road.  The effects of hepc on the liver long term are very well documented and odds of liver disease advancing are much higher than the odds of SVR with current SOC.  I know it's a case by case decision, but this disease doesn't lie dormant while we decide how to approach treatment.  It's doing what it was designed to do, ravage the liver.  That is why I agree with you about treating early.  Arguement can be made as to why a wait and watch approach is best, but in the long run I'd rather have no progression of liver disease even with the odds of SVR being low for geno 1s.  

Trin

[moahunter]

"" but I see "watchful waiting" as a very reasonable strategy"

I agree as you know I am also a big fan of watchful waiting, even more so now in light of recent drug successes within the last few years. HCV has to be the most over treated disease of our time "

If we had a treatment option around the corner, which presents minimal side effects, that seems to be close to success, I might agree with you. For example, if the vaccine research shows some promise. But at the moment, we have treatments that are in the pipeline that for some people that may reduce treatment times, and for some people, result in a higher success rate. My biggest concern is that if we think people who afraid to even try 4 weeks of SOC now, are going to be happy to try even more drugs, I think we may be deluding ourselves. It is a personal choice, and there will always be people afraid of medicine that can work, who will put it off (sadly, though, puting things off in life isn't always the way to deal with it). As it stands, we could cure around 65% of even the 1's with SOC, but only a small percentage have become cured. When we have treatments that can cure 90%, I suspect still only a small percentage will take that option, because it always seems easier to "watch and wait", especially when there is lots of information that "it's not that bad really".

I think you will find a shift in medical orthodoxy is happening, and that shift will accelearate though, if no other reason than the need to encourage people who decided to "watch and wait", into treatment to pay for the new drugs when they arive. I don't think this shift will be a bad thing, and it seems clear, that there is science behind it as the time bomb of Hep C patients and their associated complications is starting to result in more and more problems in GP offices.

"Don't you ever give someone in this small group the impression in the slightest that you are diminishing anything to do with HCV.  They will most assuredly take it as an attack upon their status as a victim and it is usually at this point that they will  turn mean and nasty. If you happen to knock one of these types off of their pedestal of victimhood for even just a moment all hell can break loose. "

I hope you are not referring to me and Alagirl with this. Yes, I understand Hep C is not as likely to kill you as a disease like Cancer, if you had Cancer. But, for people who have Hep C and not Cancer, it is real. It wears people out and kills. It's fine to trivialise it, and say "it's not that bad really", but if you really believed this, why would you have devoted so much time to proving that you are not a "victim"? As to treating because there is a stigma, please provide some examples of people who have done this, for I think it is total nonsense. People treat because they feel they are sick. And if you have elevated liver enzymes, then IMO you are sick, even if it is just a "little" elevated. Treatment won't work for everyone, and everyone has a personal decision to make about how sick they are happy to live with, and whether or not the upside to waiting (avoiding the scary treatment) outweighs the benefits of being healthy.

[Trinity4]

I have told no one except my immediate family I'm treating for hepc.  I refuse to be a victim.  I don't want anyone ever to feel sorry for me.  That makes me angry.

[R Glass]

I am one of the Stage 1s that treated. I am (hopefully was) 2b and was RVR.
If I knew then what I know now, I would have took the “Wait and Watch” approach. I am one the exceptions that suffer from extreme Side Effects, but that is hindsight.
I don't know how long I would have waited for new treatment and at what stage, I would have drawn the line.
I feel I treated because of ignorance, fear, and following what my Dr. suggested.
I never really thought of the Stigma of HCV playing a role in my decision. I must admit the post has me thinking that maybe the Stigma did play a small role in my decision.

[alagirl]

it was determined that nearly 2 out of every 100 immigrants come into our country with HCV (.018 to be precise).  The highest incidences of these were, respectively, from the Middle East (4.8 % prevalence in country of origin), Sub Saharan Africa (3.8%) and then Southeast Asia (3.2%).  I do know that the immigrant population is now considered a risk factor all on it's own for HCV here in Canada and particularly if from one of the countries where it is  known to be more prevalent.  
--------------------------------------------------------------------------------

Another huge at risk group in the U.S. - undocumented workers.  We have a huge number of them, latino in particular.  There are many barriers to assessing the true level of HCV and HIV in this group.  Frequently, undocumented workers won't seek health care, PARTICULARLY for infectious diseases (if they even know that they are ill with an infectious disease), due to lack of insurance, language barriers, and most of all, due to perceived risk of deportation.  That turns out to be well founded at times.  About eighteen months ago I know of a case personally in which one of the poultry plants here took a patient in for a workplace injury (I think she had accidently sliced open her hand), and while treating her, the doctor asked her if she was a U.S. Citizen.  She was honest with the doctor and told him she was.  After she left, he called the INS and reported her, and they came and picked her up at work and deported her.  

The total latino pop of the US (citizens and undocumented workers together) is thought to be somewhere around 13% of the total US population.  Yet even with a large segment of that population not getting medical attention, 20% of all HIV patients are latino - I don't have any stats for HCV.  But it makes me wonder about the true picture of HCV (and HIV) in that group.  (those are from lulac info published in 2004)

I don't think we can really claim we have a handle on HCV and that the new case number is really declining as rapidly as we say it is unless and until we can:

1) Do retrospective studies on the timing (within the scope of the disease) that we were finding HCV during its reported boom of 200,000+ reported cases per year.  In other words, looking back at those cases to see why they were reported.  Were they reported because those people who had transfusions were being scrutinized more closely due the nature of their other illnesses?

2) Devised some method of counting the incidence of new cases in the undocumented immigrant community.

3) Demonstrated that we know how quickly the IVDU community is growing and that we are successfully able to measure the incidence of new cases in that community.
(In some places, it is not legal to do needle exchange programs.  Not LEGAL - even if the community or a private organization pays for it.  I just can't see how HCV or HIV would slow in that type of environment.)

Obviously, I would be thrilled if HCV burned itself out in the next 20 years or so.  I would just hope that before we take that for granted we ensure that we aren't overlooking anything.

[alagirl]

Jim - I will be very brief as typing with one hand due to tennis elbow which btw is not an extra-hepatatic issue nor caused by interefeon :)
----------------------------------------------------------------------------------
Defending your lady's virtue I suppose... ;)

Ron - I don't know how long I would have waited for new treatment and at what stage, I would have drawn the line.
-----------------------------------------------------------------------------------
My thing would have been, I think - again, had I just discovered that I had chronic HCV as opposed to the acute, that I would have been worried about whether my renal function would be compromised enough to cause me serious problems.  Almost, I might have worried about it more than my liver function.  Because if you have ESLD, you can treat post tp, but with kidney tp's, post tp tx isn't recommended because it can lead to organ failure.  Not to mention the fact that unless you still have very mild HCV, you might be at a serious disadvantage in terms of actually being the one to get the next available kidney.  

(Don't know for sure on that, but I did see at least one program that allowed only mild liver damage if you wanted to considered for entrance to their renal tp program.)  In that same article there was a case study of a young man who had developed renal insufficiency only two years after he was first exposed to HCV.  I just know I would be THAT guy.  Seriously, I don't know if I would be that guy, but I would always be worried about it.  

Jim - I didn't know the amount of interferon given during tx could be cut significantly in the next ten years.  I can see that as a logical reason for people with lesser amounts of damage to delay tx - and particularly so if they are genotype 1.  If I had my tx to do over again, I would have listened to the studies and quit tx after 12 weeks despite the fact that it was ama.

[alagirl]

"Don't you ever give someone in this small group the impression in the slightest that you are diminishing anything to do with HCV.  They will most assuredly take it as an attack upon their status as a victim and it is usually at this point that they will  turn mean and nasty. If you happen to knock one of these types off of their pedestal of victimhood for even just a moment all hell can break loose. "

I hope you are not referring to me and Alagirl with this.
---------------------------------------------------------------------------------------------------------
wow.  seriously?  were you referring to me?  Hey, I am fine to have done with this segment of my life, but I kind of feel like I should be giving back somehow, and possiby helping with hcv advocacy.  I am, by and large, one of the really lucky ones as far as this disease is concerned.

And as stated above, there are some things that make me feel uncomfortable that we're accurately reporting new cases in the U.S. - and I've outlined the reasons why.  You may think my reasons are dump, or stupid - and you make think I'm stupid, and I can't help that.  I would LOVE to believe that hcv is something that is just going to disappear, but it doesn't make sense to me on the face of things that a disease that is spread the way this one is could eradicate itself unless you lessen the "risk" in the at risk groups.

And / or - When tx's come out that are more easily tolerated and allow people to treat for shorter periods of time, then I could see how that end (the treatment end) could start closing up the gap and possibly resolve much of the spread.

And btw - my family has not been nice and forgiving during my entire tx.  In fact, during the latter part of it through now they've been pretty sucky.  

[Trish77]

I would be very surprised if someone treated on stigma alone.  That was certainly something I was looking forward to getting rid of if I treated and an influence in my decision to some degree but not when I was sorting through the decision rationally, more like the extra bonus I'd get if I treated early and was successful.  If that was my only reason or influence, I would not have treated now.  I think most people treat early because they just want this disease gone and out of their body.  

I do think that too many people end up treating early because they do trust their doctors who say you need to start treatment now and they believe that and don't know their options and how bad the side effects can get.  I find it upsetting that people are not adequately prepared and then the sides start hitting and they go "what the heck is THIS all about?" and haven't been prepared well at all for the financial, social and economic toll treatment will have on them.  Sometimes I think it's fair for people in this situation to file a lawsuit when they've been impacted negatively by factors they could have controlled if their doctor had been more informative.

I find risks with the "watch and wait" approach as well, namely the extra-hepatic conditions that can arise.  Having said that, one has no idea if the side effects will end up causing other, permanent health conditions.  It's just a tough choice all around and continues to be a very personal one .. if one has the good fortune to be reasonably aware of what they're getting into first.

Trish

[jmjm530]

RG: I never really thought of the Stigma of HCV playing a role in my decision. I must admit the post has me thinking that maybe the Stigma did play a small role in my decision.
--------------------------------------
Not sure if this is exactly "stigma" or what Mr. Liver is talking about, but in several threads women have characterized their feelings about having HCV in a very organic almost guiltvictimized way using words and phrases such as "I felt dirty with the virus inside me and wanted to be rid of it at any cost".

Men, on the other hand, tended to talk more in terms of what their doctors told them or what they read about the virus.

Hopefully, no one will take this to mean that all women feel this way or all men that, but just an observation after over two years how perhaps the different sexes look at things.

Personally, I never felt "dirty" with the virus inside me. It was just a virus I had to deal with.

-- Jim

[Mr Liver]

HCV poses exactly ZERO threat to our national security ---not EVEN close. Why don't you read the link furnished so you can gain an understanding of the topic before commenting,
ML

[Mr Liver]

"That whole national security thing, from a point of view of the security of the U.S. being at stake wasn't really persuasive to me"

Why don't you ACTUALLY read the link and then come back and comment specifically on which parts don't convince you. Since you have yet to answer ONE question I've posed to you I am not expecting a reply on this topic.

Mr Liver

[R Glass]

Jim
I think back to when I was first dx. and didn’t have a clue what Hepatitis C was. Once word got out that I had it, it spread like wildfire. I realized that if I didn’t know the facts about HCV, I couldn’t expect them to know either.
I had a close friend ask me if he could have caught it because he drank Jim Beam after me at our deer Camp. I told him it was a good possibility and he should get checked. After enjoying the panicked look on his face, I told him the truth.
I also enjoyed hugging my friend wives’ neck and kissing them on the cheek, knowing this gave them the “Willies.”
So looking back, Stigma might have played a SMALL role in my decision.

Allagirl
it is Ricky, Ron Glass was the Detective Ron Harris in the television sitcom Barney Miller

[Trish77]

"HCV poses exactly ZERO threat to our national security ---not EVEN close. Why don't you read the link furnished so you can gain an understanding of the topic before commenting, "

My comment to you was "IF you meant.... by threat to national security" so obviously there is a lack of clarity.  Why don't you explain what you mean by that before attacking so that I CAN comment properly.

Trish

[Mr Liver]

"I wouldn't say that HCV poses NO threat to national security, if by that you mean the overall cost from the impact of the disease, either due to medical treatment costs or cost of transmitting the disease to others. "

When you made this comment it told me that you never read the article at the link I provided immediately below my statement. If you had, you would have known EXAVTLY what I meant and you might have gained some knowledge as to what types of problems a pandemic disease can create by every measure, not just financial and get a good understanding of how disease could threaten our nat'l security. And if you researched the subject further it would illuminate the potential problems that can be faced which could threaten our national security in other ways than those discussed in that ONE article.

IVDU which is the primary infection vector for HCV in the US Canada and Europe does not affect our national security in any way. IVDU usage has dropped by more than half since its peak.

" I'm saying I think it's misleading to say that HCV poses NO threat to the U.S. from a global influence. "

This is an example of not reading what someone has actually written. I said nothing close to what you just said I stated. Before telling someone that they are being deceptive you should determine what was actually said before making the accusation. There is no threat of widespread infection because a few immigrants have HCV. How many IVDU do you think there are in the Sahara desert ? The poorest people on the planet and you think they are injecting drugs. Sometimes I can't believe how far people will stretch to try and support the weak assertion they made.

"I do know that the immigrant population is now considered a risk factor all on it's own for HCV here in Canada and particularly if from one of the countries where it is  known to be more prevalent. "

AND

"  it was determined that nearly 2 out of every 100 immigrants come into our country with HCV (.018 to be precise).  

I'm going to assume you meant to put the decimal in a different place. It's supposed to be 1.8% which is the SAME infection rate for Europe, Canada, and the US so your point is meaningless. How can you say its more prevalent overall and then put down those numbers ? You don't know what the infection rate is in your own country ?

Mr Liver

[Mr Liver]

"Demonstrated that we know how quickly the IVDU community is growing and that we are successfully able to measure the incidence of new cases in that community. "

The numbers of IVDU in the US has been REDUCED by HALF since the 80's. Why don't you do a little research before you post ? You've stated repeatedly that IVDU use in the US is up. All studies say just the opposite.

"Another huge at risk group in the U.S. - undocumented workers"

HUGE ? Its that kind of statement that leads me to believe you do  not have much knowledge about HCV. Illegal immigrants do not have an IVDU problem. They come north to work. The vast majority of them could NEVER support a drug habit not to mention it is highly stigmatized in their society. Show some proof for these statements that you make. I have asked you several times before but apparently you think your opinions will substitute for fact.

"I didn't personally call it an epidemic.  But many doctors have (and pandemic as well), and I can see their point.  I do understand the numbers on this.  The slew of earlier cases increased by year, mostly due to transfusions, peaking somewhere in the mid two hundred thousands during the eighties."

You are not very knowledgable about HCV and related topics which is understandable as you are new to it. Your statement above about transfusions causing the explosive growth of HCV in the 70's and 80's is factually incorrect. You've stated this twice now so I thought I'd correct you before you make the same mistake again. It was primarily IV drug use that swelled the number of NEW infections , NOT transfusions.  

" we don't have the first clue as to how many new cases we truly have every year".

You might not have more than a clue--- but the scientific communities do and the estimates are very accurate. You seem to have no problem using estimates if you think it will further your point. Why do you trust those numbers ? They were arrived at the same way--statistical analysis. The science of statistical modelling is very complex and not easily understood by the average person. Every research paper includes a number which reflects the strength of the accuracy of the numbers used. You might want to look into that.

"I feel strongly that HCV needs more awareness and attention"

I believe I saw you say something similar months ago. So now months later I have to ask---what are you doing NOW to promote awareness and attention? And I'm not referring to telling the clerk at the store about it. Have you looked into volunteering or starting a support group, or arranged for  local media interviews, write editorials, letters to the editor etc, etc. ??  If you live near a city there are plenty of volunteer positions needed by the local support orgs. There are also heallth fairs which need volunteers. Have you ever even written your representatives in gov't from the local to the federal level ? How about community access television on cable ? It's free. I would love to hear what you have done to promote awareness and prevention.

You suggest things in your post that have been done long ago such as retrospective analysis concerning infection rates from the 70',80'90's. Its been done a hundred times by researchers and agencies.

You seem to have NO problem using infection rates when you think they are helping you prove a point.

If another penny wasn't spent on HCV it still would be virtually non-existent in the US in 20-25 years.
How do you figure?

This is information that you can go find for yourself. Let me lead you through it part way. Go find the projected IVDU in the US  for the next few years. Since it is trending downward since the SEVENTIES, you can safely assume it will continue to do so. But work with current number as I'm willing to give you the break. Then find out the projected number of HCV infected in 25 years. Of course this number will be almost exclusively represented by IVDU. Then come back and post the number and we'll discuss how much of a danger it poses to the average American citizen or our gov't.  I won't be holding my breath.

"I do think though, that the new infections are rising, or are just about to rise and a) that they are going to continue to increase and that b) this is due to IVDU's"

Where do you come up with this nonsense ? Incredible. You seem to have an endless supply of misinformation.

Look, I've given you facts, while you've given me opinions and factually incorrect statements. You do not corroborate anything you say, while I've furnished you with references for my assertions. I've answered your questions and you have not answered a single ONE of mine. For these reasons this discussion is now over.
ML

[Trish77]

"There is no threat of widespread infection because a few immigrants have HCV. How many IVDU do you think there are in the Sahara desert ? The poorest people on the planet and you think they are injecting drugs. Sometimes I can't believe how far people will stretch to try and support the weak assertion they made."

Where in anything I said, did you take me to imply that the persons from the countries I named specifically - the Middle East, SS Africa and SE Asia - have those higher HCV rates due to .. IVDU?   I don't see it this way at ALL.  That's a total assumption on your part.  Look beyond IVDU and blood transfusions and look at the practices in those countries to determine where they're getting their HCV rates from.  I didn't decide the 4.3% figure for the Middle East, nor the 3.8% figure for SS Africa.  Why would YOU assume the only place HCV comes from in any country is IVDU?  I surely don't. I attribute these numbers due to improper sterilization procedures in those countries that are not yet where we are here in North America and in some parts of Europe - not all.  I didn't stretch anything.  YOU are the one stretching YOUR point here by attributing comments to me I didn't make and assuming I have some sort of agenda that I don't have.  I simply spoke up to you on the one point and your reaction to that is offensive.  While I used the word "misleading" regarding your assertion, I did NOT use the word "deceptive".  I am not saying that you are deluded and deluding, such as you attribute to me.  While I'm certainly new at this, I've been communicating with the local AIDS organization and I have been learning from them and we are learning together.  We've discussed how to properly support co-infected persons with regards to HCV treatment where they are at.  Does that sound like I'm pushing some kind of agenda to you?  On the whole I respect your knowledge and I learn alot from you.  On occasion though, you can be a pompous a$$.

""Alagirl:  The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean."

Mr. Liver: I'm not sure why you posted this. It is meaningless unless it is given in some sort of context."

Here's your context.  When immigrants from those countries come here, they will need to be treated and IF they are not TESTED for HCV, possibility of passing on HCV exists.  (Before you say it, I GET that it's not transmissible as easily as HIV. ) THAT is an issue, the same as the lifetime of HIV treatment that others need.  Not on the same scale at all by any means but, in my opinion, certainly doesn't equate to zero issue.  You can disagree and I'm okay with that.  You're the one that said NO impact.  I simply disagree and I said so.

For the record, I read the article you posted, didn't think I needed to, your statement of absolute zero impact seemed enough on it's own for me to comment to that.  I still don't know what YOU mean by threat to national security.  I've asked you and you refuse to answer, directing me to the article.  Which, btw, doesn't mention anything about global infection rates.

No, I didn't mean to put the decimal point in a different place.  I was simply showing the math that the "nearly two percent" came from.  You misunderstood, I wasn't clear...whatever.

Trish

[Trish77]

I meant to elaborate on my perspective why I feel it is of SOME national concern rather than none that a particular percentage of the immigrant population arrives with HCV.  In MY country.   We already don't have enough treating GI's and accommodation for the currently known persons with HCV.  When I've been in discussions about efforts to identify those who haven't been tested, the discussion then turns to how they'll be treated if we identify them all.  Not that they shouldn't BE treated nor left unidentified.  But that once the move is made to identify them, the waiting times will increase even more than they already are.  I waited 10 months to get in to see the specialist.  Then two months more before I got any test results that confirmed I have active Hep C.  Harrybeads has been waiting I think five months to get the result of his six month PCR.  

To totally ignore the fact that the immigrant population arrives adding to this does NOT make it zero impact.  That is what I meant.  If that has nothing to do with your point, then simply explain why we're talking apples and oranges.  Still waiting for you to explain what you mean by national security rather than directing me to an article to do research on what YOU mean when that is best explained by you yourself rather than leaving it open to further misinterpretation.

Trish

[BelB64]

The consensus is still in most places that most people WILL die with HCV rather than from it. Let's say those predictors who say 1-5% is the number of people who will die from HCV are wrong by 30%!  It still means 65% of those with HCV won't die from it.

I would like to know approximately how many people in the U.S. have tried to cure HCV by doing some type of interferon treatment. I bet of the 4,000,000 or so who have the disease a VERY small percentage has done it.

[Trish77]

There are more issues with having HCV than trying not to die from it.  It's also worthy to prevent getting to complications caused by it.  There are a number of extra-hepatic conditions caused by HCV.  When I was diagnosed, I was perfectly healthy (as far as I knew) in every other way.  Honestly, I didn't know about extra-hepatic complications when I made my decision, however if I did, it would have cemented further my decision to treat early in combination with the other factors.  I was apprehensive about the side effects and knew as much as one who has never treated can know about how difficult they can get.  I didn't approach this from an "out d@mn spot, out" point of view as in a kneejerk reaction.  Particularly when your doc says "are you ready for a year of hell?".

There is also the issue that you have no idea at what stage your liver will degenerate.  Yes, you can monitor, however if you are Stage 1, 40+ years old and have had it already for 20+ years, statistically you've already used up a fair bit of grace there.  If you are ready to treat now and you're not sure you'll be able to accommodate it in the future, well, then perhaps you opt for the "now" you know than the unknown future date you don't know and aren't sure you'll be in a position to accommodate treatment.  As someone said once, it's your OWN statistics that matter.

I don't personally advocate early treatment, for the record.  I advocate choice.  Perhaps I step in on early treatment's behalf as valid for some because, well, I'm treating early and didn't take the decision lightly.  

[jmjm530]

Trish: I don't personally advocate early treatment, for the record.  I advocate choice.  
----------------
I will have to remember that one :)

Yes, I think just about everyone advocates *choice* but there's nothing wrong giving our opinions and where we come from, not that Trish suggested otherwise.

Unlike Trish, I decided to treat somewhat late and looking back feel comfortable with my decision. My only regret was that my last biopsy showed significant liver damage, because if I didn't, then I would not have treated and would not have lost two years out of my life, including work and friends -- not to mention that I feel I aged ten years in the two years I treated. And the older you get, the more those ten years matter.

If you're a 40 year old stage 1 genotype 1, I'd urge you to think long and hard before treating now. If you were a close friend, I'd grab you by the collar and try and shake some sense into you :)

Find yourself a good liver specialist and monitor your liver until better treatments come along. That's what I'd tell a friend, but of course, it's your choice :)

-- Jim

[Trish77]

I also feel comfortable with my decision, Jim. My life is not identical to your life, after all, hm?

I haven't pushed anyone in early Stage to go for treatment.  If you read my posts back, you'll see that I tell them they don't have to treat now, they need to educate themselves about what they're getting into and make a very well thought out decision.  It does upset me alot to see people told they need to treat now and scared into treatment and then the posts start popping up that say "my doc said this wouldn't be hard for me because of xyz!" or "my doctor didn't tell me that treatment could be like this".

Jim, if we were friends when I made my decision, I'd tell you I'm good with my decision as I HAVE thought long and hard about it....then I'd pry your hands from my collar.  :)  

Trish

[Mr Liver]

"Where in anything I said, did you take me to imply that the persons from the countries I named specifically - the Middle East, SS Africa and SE Asia - have those higher HCV rates due to .. IVDU? "

You didn't. It was a hint but you obviously didn't pick up on it.

You said: "I do know that the immigrant population is now considered a risk factor all on it's own for HCV here in Canada and particularly if from one of the countries where it is  known to be more prevalent."  

Do you still stand by that ridiculous aasertion ? Since you have done an excellent job of nailing down the primary sources of infection in those countries you have helped me to prove my point. Or all of them going to start using IV drugs once they hit the Canadian shores ?
The only way these folks could present a health risk to Canada would be through IV drug use.That is the main transmission vector for HCV today by far and away over any other means of infection. No IV use, no threat. I assumed you had thought through the scenario completely before making a statement like the Sub-Saharan etc, population was considered to be a threat to Canada or Canadians ? My mistake.

Mr Liver

[Trish77]

"Unlike Trish, I decided to treat somewhat late and looking back feel comfortable with my decision. My only regret was that my last biopsy showed significant liver damage, because if I didn't, then I would not have treated and would not have lost two years out of my life, including work and friends -- not to mention that I feel I aged ten years in the two years I treated. And the older you get, the more those ten years matter. "

With regards to your final statement here.... precisely, Jim.  Another one of MY considerations.  I wanted to treat while I was younger not older. Let go of my collar. :)

[Trish77]

ML:  "You said: "I do know that the immigrant population is now considered a risk factor all on it's own for HCV here in Canada and particularly if from one of the countries where it is  known to be more prevalent."  

Do you still stand by that ridiculous aasertion ? "

I'll have to give you this .. I didn't cut that fine enough.  Tattoos are a risk factor, it doesn't mean every person who gets a tattoo will get HCV.  While being an immigrant from the Middle East is a risk factor due to the higher incidence of HCV there, I'm not at all suggesting that being an immigrant alone is a risk factor.  My wording would suggest otherwise and I should have elaborated better than that.

"Since you have done an excellent job of nailing down the primary sources of infection in those countries you have helped me to prove my point. Or all of them going to start using IV drugs once they hit the Canadian shores ?
The only way these folks could present a health risk to Canada would be through IV drug use.That is the main transmission vector for HCV today by far and away over any other means of infection. No IV use, no threat. I assumed you had thought through the scenario completely before making a statement like the Sub-Saharan etc, population was considered to be a threat to Canada or Canadians ? My mistake"

I do think we are talking apples and oranges from your additional comments and if you had answered my question on what YOU mean by threat to national security, we could have saved alot of trouble here.

You are only talking about spreading HCV as a threat to national security, it seems, from your latest comment.  And while IVDU is the greatest factor and increasingly so on transmission of HCV - and I do agree with you on that and have said so in other discussion threads on tackling the stigma, for example - it's not the only method of transmission.  I agree that the threat of transmission is small but not without any impact at all.  You also ignore the fact that if they do not know they have HCV, there is a risk of transmission to their children in birth and to their spouses / sexual partners.  Small but not non-existent and not via IVDU.

Perhaps living in Canada with a universal healthcare system, I also consider the cost to treating persons with HCV a threat to national security. Everything that costs the healthcare system has a trickle-down effect and I've already explained that to you - the impact on waiting times, the fact that  the cost for treatment drugs are only supplemented for one round here due to the overall burden on a government funded healthcare system, the fact that funding is not supported for anyone below Stage 2 for the same reason... believe me, the cost to treating our own citizens for HCV is an issue here, let alone treating an additional 2% of the immigrant population.  You totally ignore this aspect of it.   I personally think this is a valid consideration and THAT is why I said I disagree that the global impact is not of NO consideration.  You can disagree.  I happen to think this is valid also.

Trish

[jmjm530]

Trish: With regards to your final statement here.... precisely, Jim.  Another one of MY considerations.  I wanted to treat while I was younger not older. Let go of my collar. :)
------------
Except that ten years from now, we have every reason to hope that the two years I lost will be just a few months, and possibly even without interferon. And sorry about the ruffled collar, I'll pay for the laundry bill :)

-- Jim

[Trish77]

True enough on that, Jim.  Just a matter of, as always, if one can tolerate waiting that ten years and risking that we might have to treat prior to that.  Some of us yes, some of us no.  

If you watch and wait, the wrinkles in the collar might settle out on their own...won't cost you a thing that way. ;->

[Mr Liver]

"I disagree that the global impact is not of NO consideration."

I never said it wasn't. See, this is the problem here. You make up things that were never said. I've told you already what I said TWICE and you still get it wrong. Please review ALL of my posts and then show me where I said anything even close to that.

You are only talking about spreading HCV as a threat to national security, it seems, from your latest comment."

Where in the heck did that come from ? My assertion has been from the beginning that HCV does NOT pose a threat to our national security in the US ,Canada, or Europe.
I do not want to spend the time explaining how a disease like AIDS can actually threaten the security of a nation when the link I posted directly below my statement explains how this can happen, and gives plausible scenarios.  This is the THIRD time I am telling you this. When you understand how the threats could manifest and then try substituting HCV in the place of AIDS in those scenarios you will see how HCV is not, nor will it ever be, a threat to national security.  HCV has less of an impact on your healthcare system than the many in Canada who go to the doctor's every time they have a runny nose. That accounts for alot of the long waiting times there, and the extra cost burden on the system.

I looked this up..Canada allowed 260,000 immigrants to move to Canada permanently last year. 1.8% of that would be 4,680 infections and much less than that number would end up treating. I think even the overworked healthcare system in Canada can handle that without any resultant harm to your nat'l security. If the Canadian gov't thought a problem of that magnitude they would reduce or test the immigrants allowed to move there. Next year the Canadian gov't will allow 330,000 new immigrants to move there. That doesn't sound like the gov't is too concerned about any addt'l healthcare costs caused by immigration.

Anyway Trish I think I've provided enough accurate and up-to-date information to cover the points I have been trying to make. People can choose to reject them or refute them if they want. That's fine with me, as long as they don't attempt to refute fact with opinion.  What I really don't appreciate is people such as you and alagirl, and trinity making up things that I have never said. And to add to the insanity you and those others have gone on to attack those very words that I never uttered. That part is pretty funny to watch at first but it gets boring after awhile as I'm sure you can understand.
I am posting this again just for you. I know you are interested in the topic.

http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0030171&ct=1

Have the last word, please. I am done with this topic for now as I have made my points.

Mr Liver

And please don't worry about your nat'l security. Your friends to the south wouldn't let anything happen to y'all.

[Mr Liver]

As I've repeatedly stated--- in the US HCV is an epidemic that WAS. Need proof ? Here you go. Now, if you think this fits the profile of an epidemic please do not reply to me.


Incidence of hepatitis C, United States
Year Estimated Total New Infections
1982                 180,000
1983                 188,000
1984                 219,000
1985                 261,000
1986                 262,000
1987                 216,000
1988                 240,000
1989                 291,000
1990                 179,000
1991                 112,000
1992                   73,000
1993                   57,000
1994                   54,000
1995                   36,000
1996                   36,000
1997                   38,000
1998                   41,000
1999                   39,000
2000                   38,000
2001                   24,000
2002                   29,000
2003                   28,000
2004                   26,000
2005                   21,000
2006                   19,000

For 2008 they forecasted 18,000 new infections.

[Trish77]

4,680 infections a year adds up, seems to me.  

As for this, "HCV has less of an impact on your healthcare system than the many in Canada who go to the doctor's every time they have a runny nose. That accounts for alot of the long waiting times there, and the extra cost burden on the system."

I agree that people run to the doctor far too easily here because they can.  One of the downsides to a universal health care system.  However, there have been various hepatologists and others paying alot of attention to the costs of HCV here lately and particularly that we don't have enough resources to handle the expected future costs.

I can actually get in to see my family physician quite fast.  Where the waiting times exist is to see any kind of specialist or testing and subsequent results.  That doesn't have alot to do with runny noses at the GP's office.  Cost burden to the healthcare system yes.. however, this doesn't negate the cost of HCV on the healthcare system, particularly as it's the leading cause of liver transplant here as well as the U.S. 1- 5% of that 4,680  HCV-infected persons a year coming into Canada  ending up dying from HCV and all the costs from those who have all the healthcare issues that go with HCV regardless if treating or not ain't going to help us a bit.

It really pisses me off that you suggest I made things up as if that was intentional and as if I have no interest in being factual. Misunderstanding you is not making things up. You're guilty of what you accuse of.  I did ask you for clarification repeatedly and you were arrogant about it.  When I first posted to you, it was not a challenge nor was it jumping on a bandwagon.  I was seriously interested in your response and open to what you had to say.  Your responses have been seriously offputting.

Trish

[Trish77]

Now YOU can have the last word..which you would have had, if I'd been a little faster to click Post.  I don't care to continue on this.  I'm disappointed completely in the tone you have chosen to take which, to me, was completely unnecessary and makes this conversation of no further interest.

[HCA]

Agreed-it is the rising mortality prospects among rhe extant HCV population that I think this thread kicked off with.It has strayed into a different domain
Indeed the revenue prospects of Vertex have the diminishing size of the patient base factored in.
As I mentioned in an earlier post the old canard about dying with it rather than from it has become rather reduntant now,

[alagirl]

I'm going to ignore your condescending tone and the fact that you think I don't read the studies and articles posted by you and others before replying.  I hardly see what the use would be in replying to you were that the case.  I read the information about HIV and national security and wasn't persuaded by the argument that it was an immediate national security concerns.  I do understand that others may find it significant.  It does not make me an idiot to think that there are other issues that have far greater impact on national security that we don't seem to care about very much - like allowing China to purchase so much of our debt.  Also, I believe that you have attributed a comment to me that was not actually made BY me on that topic.

I have been researching non-stop, hours a day, every day, for the past year.  My formal education was more than adequate and did include coursework in the sciences, anatomy, and experimental design so it is not as though I am unable to to grasp the nature of my disease.  I HAVE answered your questions and objections about my views on various topics during this chain of posts and I have backed my answers with studies and articles showing the opinions of others in this field.  I don't just pluck my viewpoints out of thin air, and certainly if the ponderence of research shows something different than my view, I will follow what the majority of the research holds.  The articles I posted included several recent studies backing my assertion that HCV has a role in the mortality of those with HIV, which you promptly ignored.  Instead of commenting on studies that I post - agreeing with them, or disagreeing and posting your own recent studies, you respond to me with personal attacks and tell me I don't know anything.  It's a manner of debate that really isn't my preferred style of argument.  Also, I do not discuss what I do and don't do in the name of advocacy for hcv or anything else.  In my family such matters are not spoken about with others and I can only imagine that if I did discuss anything of that nature on this board you would have turned it around to accuse me of  "relishing my victimhood."

IVDU WAS rampant in the 60's and 70's.  There are a significant number of people who got hcv from IVDU during vietnam.  I'm going to stand by my assertion that the larger numbers of documented new hcv cases we used to see due to our inability to make certain we had a blood supply that was free of hcv were FOR that reason.  Possibly the numbers were augmented by greater IVDU before cocaine was all the rage, since snorting coke isn't as effective a transfer method as IVDU, but I've never personally seen an expert who didn't say that the bulk of the problem was due to anything but the healthcare issue.

http://www.hhs.gov/asl/testify/t041214a.html

My THEORY is that we caught those new cases more quickly due to the ill health of a large number of the individuals involved.  (Which would lead to a quicker of counting of new cases then, and an undercounting of people who are primarily exposed in other ways now)  It is only a theory, and I would like to, but have not seen, retrospective studies on this particular issue - even though you have stated they are there.  I have not found retrospective studies specific to that topic.

With the surge in meth use I DO believe that our IVDU is enjoying a surge and if at some point you are interested in commenting on studies I have posted in response to previous points then I would be happy to argue with you further, and to post additional studies, but I am not going to take the time to look them up unless we are actually going to talk about the studies.

This quote from SAMHSA soliciting grant requests for HIV documents a couple of the points I was trying to make:

"Since the AIDS epidemic began, injection drug use (IDU) has accounted for more than one-third of AIDS cases in the United States.  Of the 43,517 new cases of AIDS reported in 2000, 25 percent were injection drug use (IDU)-associated1.  Racial/ethnic minorities in the U.S. are most heavily affected by IDU-associated AIDS.  In 2000, African American adults and adolescents accounted for 26 percent of IDU-associated AIDS cases and Hispanic adults and adolescents accounted for 31 percent, as compared to 19 percent of all IDU-associated AIDS cases among their white counterparts.  IDU-associated AIDS accounts for a larger proportion of cases among women than among men.  Fifty-seven (57) percent of all AIDS cases reported among women have been attributed to injection drug use or sex with partners who inject drugs as compared with 31 percent of cases among men."

Obviously, this is regarding HIV in the legal hispanic community.  It does, I believe, illustrate one of the avenues for risk to the undocumented community though. I understand, perhaps better than most since I work so much with that community, that undocumented workers who come here from Mexico and the surrounding areas do so to work, and they work hard when they get here.  I have also seen that over the years, as people settle into an area, they or members of their family pick up the bad habits of the people who are already living there.  And frequently, people don't move to a place where they already have family if they can.  There is also trafficking of illegal substances that occurs in those communities along the route from Mexico, taking advantage of the fact that there are now people in the area to move it - cocaine and marijuana.  IVDU is NOT a culturally accepted activity, but obviously, it does happen. And immigrants are more at risk if they live with family members who are already using.  If immigrants do become ill, there really isn't a good way for them to get medical service in most areas.  

On IVDU (overall, not in immigrant communities), in addition to meth, and cocaine, people are shooting up pills like dilaudid (sp?) that they buy at $25 a hit.  They get these from the folks who go to the pain clinics chiefly in order to sell their prescriptions.  The use of meth in the rural communities is astonishing.

Plenty of online info on substance abuse trends, but you don't have to go very far out in your community to spot trends in substance abuse.:

http://www.samhsa.gov/Grants/2008/sp_08_001.aspx
"In 2003, there were 237,000 substance abuse treatment admissions for injection drug use (13% of all admissions reported to SAMHSA's Treatment Episode Data Set [TEDS]).  Opiates accounted for 77% of admissions for injection drug use, followed by stimulants (16%) and cocaine (6%). Most substance abuse treatment admissions for injected opiates were self/individually referred to treatment (58%); while most admissions for injected stimulants were referred by the criminal justice system (44%)."

Again - my opinion - but I think that the idea that somehow hep c is on its way out is, lamentably, wishful thinking.  And I am NOT seeing a lot of research to show that it is going to exhaust itself in the next twenty years or so, despite the fact that there have been "diminshing" figures on new cases.  There is currently no good system that I have seen for counting new cases nationwide, or even statewide in most states.  There are some good models in some small areas.

Again, it is my OPINION, that the best thing that will happen to this disease is that when newer drugs that are better tolerated and more successful make their way to the market they will start closing up the gap from the top and that is the point at which we will start seeing the number of hcv cases diminish - or rather, that is the point at which the number of cases WILL actually begin to reduce.  Certainly it slowed when they started testing the blood supply, but I think that real progress on extiguishing it will begin from the top down instead of vice versa.  

If you are interested in commenting without hurling insults at me that's fine.  Otherwise, just please try to ignore me.  

[alagirl]

Ricky - Sorry about that.  I don't have any idea where that came from.

Syd

[alagirl]

Actually, and I had suspected this but didn't know for certain, they started screening blood donors for high risk factors from the mid eighties on and this is why the new cases showed declines even prior to the ability to actually test those donors in '92.

[Trinity4]

" What I really don't appreciate is people such as you and alagirl, and trinity making up things that I have never said. And to add to the insanity you and those others have gone on to attack those very words that I never uttered. That part is pretty funny to watch at first but it gets boring after awhile as I'm sure you can understand. "

I did not post on this thread so leave my name out it.  I'm so over you and your condescending, egotisistical bulls-h-i-t.  You sound like the victim you wrote about in one of your other babbles.  The same tone throughout- I didn't say that, and you didn't read it correctly and you don't understand my point.  Sounds like a victim to me.  I .  Don't utter my name again.  I don't want to see it in type.  Have I been prefectly clear on that?  You do understand, don't you?

[Trinity4]

Just so there is no room for "error" as I have been accussed of doing each time I post about HCV -  I did post on this thread.  What I should have said was I did not post during the last part of this discussion.  My posts were directed to ala and rita.  I challanged no one nor did I become accusatory.  

[alagirl]

And frequently, people don't move to a place where they already have family if they can.  
------------------
Sorry, in reading this again, what I meant to say is that people DO move to a place where they already have family if they can.