45-Year Follow-up of Patients Infected with Hepatitis C as Young Adults

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    45-Year Follow-up of Patients Infected with Hepatitis C as Young Adults
« on: March 05, 2007, 10:09:37 PM »     

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45-Year Follow-up of Patients Infected with Hepatitis C as Young Adults
18 January 2000 | Volume 132 Issue 2 | Page 105
Summaries for Patients are a service provided by Annals to help patients better understand the complicated and often mystifying language of modern medicine.

Summaries for Patients are presented for informational purposes only. These summaries are not a substitute for advice from your own medical provider. If you have questions about this material, or need medical advice about your own health or situation, please contact your physician. The summaries may be reproduced for not-for-profit educational purposes only. Any other uses must be approved by the American College of Physicians-American Society of Internal Medicine.



The summary below is from the full report titled "45-Year Follow-up of Hepatitis C Virus Infection in Healthy Young Adults." It is in the 18 January 1999 issue of Annals of Internal Medicine (volume 131, pages 105-111). The authors are L.B. Seeff, R.N. Miller, C.S. Rabkin, Z. Buskell-Bales, K.D. Straley-Eason, B.L. Smoak, L.D. Johnson, S.R. Lee, and E.L. Kaplan.


What is the problem and what is known about it so far? 
 

Infection of the liver with the hepatitis C virus can, in some cases, lead to severe liver disease. Little is known, however, about the outcome of hepatitis C infection over the long term. The drugs used to treat hepatitis C can cause side effects, are only partly effective, and are very expensive. Knowing how often serious liver disease actually results from hepatitis C infection would help in deciding whether widespread screening and treatment for hepatitis C is reasonable.


Why did the researchers do this particular study? 
 

The researchers wanted to learn the long-term liver-related medical histories of patients who had become infected with hepatitis C virus when they were young adults.


Who was studied? 
 

8568 military recruits at a Wyoming Air Force base who had had blood drawn between 1948 and 1954. The samples were kept frozen thereafter for almost 50 years.


How was the study done? 
 

The researchers first tested the thawed blood samples for evidence of hepatitis C infection. Using computerized information from the Veterans Affairs Administration, the Health Care Financing Administration, and the National Death Index, they then tracked the medical condition of the recruits with and without hepatitis C infection between the time the initial blood samples were drawn and December 1996.


What did the researchers find? 
 

Seventeen of the original blood samples from the 8568 recruits tested positive for hepatitis C infection. Over the 45 years of follow-up, 2 of these 17 recruits (11.8%) with hepatitis C developed liver disease compared with 205 of the 8551 (2.4%) without hepatitis C. Seven (41%) of the 17 recruits with hepatitis C had died by December 1996. One died of liver disease, 5 of causes other than liver disease, and 1 of an unknown cause. Of the 8551 recruits without infection, 2226 (26%) had died by this time, 119 from liver disease.


What were the limitations of the study? 
 

The accuracy of the hepatitis C test results in blood stored this long is uncertain. It is also possible that some study subjects who were free of the infection at the time the blood was drawn developed it sometime during the next 45 years. With only 17 persons identified with infection, the study had limited ability to say definitely whether liver problems were more common in people with hepatitis C infection than in people without it.


What are the implications of the study? 
 

Serious liver problems may not develop very frequently over the years as a result of hepatitis C infection acquired at a young age. Liver problems do, however, appear to be detectable more commonly over time in persons who have hepatitis C than in those who do not.







 
 

[cfree]

Hi everyone, cfree here.
 This study is very interesting to me. Although no one can be sure when they actually contracted , I probably got Hep C 35  to 40 years ago. I have a few questions.

 Seventeen of the original blood samples from the 8568 recruits tested positive for hepatitis C infection.
That is  .2%! Yes, that is point 2 percent.
 The CDC says 1.8 percent of the U.S. population has  Hep C. In a recent study of veterans with blood tests performed in an outpatient setting in Northern California, 17.7% tested positive!

Why so much less Hep C from 1948 to 1954 blood samples? And from people in the military. The military is known to have higher rates of Hep C, right? I know recreational intravenous drug use was not as popular then. However I met a man in 1976 at a 12 step recovery meeting that stated his injection drug abuse in the Korean War. The Korean war started in 1950 and ended in 1953.
So I know there was some intravenous drug abuse in the 1950's.

Here a link about the history of intravenous drug abuse:
http://72.14.253.104/search?q=cache:s-iqwmQ2AWMJ:www.link.med.ed.ac.uk/ridu/Hxidu.htm+history+%22intravenous+drug+use%22+%22+the+1930%27s%22&hl=en&ct=clnk&cd=2&gl=us
It says:
The first blood borne organism associated with equipment sharing was in fact malaria[19-23]. An example of inadvertant early harm reduction for intravenous drug use  may have been the practice of using quinine as a diluent for street heroin. This became common in New York during the 1930's such that the problem of artificially transmitted malaria was not seen in New York after 1943[5].

Looks like intravenous drug abuse was fairly common in New York during the 1930's!

[Ella]

Thanks cfree - that's a really interesting article.  I've been looking for really long term studies about this disease, and must admit I'm surprised that after 45 years, so few people had serious liver disease - and most of the people who had died, died of something else!  This seems to fly in the face of what we think we know today.  Perhaps there is another factor now that is influencing the coarse of HCV - another symbiotic virus for instance.

And I'd never thought of malaria as being spread by shared needles as well as mozzies!

[willy]

 This somewhat limited study only contained 17 HCV positive people.  I agree that it is encouraging that so few (only 2) had died after about 45 years from liver related disease. 

In their web presentations Vertex often refers to a recent French study which suggests that 100% of people infected with HCV will develop cirrhossis if they live long enough. According to the study quoted by Vertex most of us are aging, have had the virus for decades, and will experience decreasing immune response with associated increasing liver damage.

I'll have to find the study and post it here.

Thanks for posting the information.  I hope there are new treatments coming that can help us out in the near future.

Best,
Willy

[19Dragon52]

(((Hi Folks)))

What I want to know is how can the study tell if the unrelated deaths really were unrelated ?!  I ask this because when I lived in CA I found myself in the "ER" 3 consecutive days with excrutiating pain.  They did continual bloodwork, a complete GI Series, Cat Scan, x-rays and fed me a non-narcotic pain killer intravenously so I could occasionally rest from the pain and get a little sleep.  When all was said and done after 3 days the "ER" doctor talked with me an advised me that he thought it might be time for me to go on Hep C treatment.  All the testing and over-seeing for the continual pain showed NOTHING wrong during those 3 days.  The pain would strike out in various places through that duration.  First they thought it was Pancritis, then Gall Bladder, etc., etc. and lastly...appendecitis.  I am quite sure I was a long-term Hep C candidate from intravenous use in the 60's using shared equipment.

I guess what I'm getting at is cases that don't appear to be due to diagnosed Hep C patients.  I believe many deaths & other horrific symptoms can be contributed to the Hep C Virus.  Thus my questioning the very theory that this testing has shown.

One Never Knows!.....

[Straight__Up]

I question it too.   Hep C doesn't have to kill you to interfere in your life substantially.   They should measure that.

Some researchers believe they have traced HCV to the New York jazz scene circa 1940's, I read. 
The hard lived life  and death of Charlie Parker and some of his contemporaries seem to
suggest this profile. 

I don't think it's a predictable thing (because of too many co-factors) unless you abuse your system,
then of course  your chances are probably higher of getting sick from this virus one way or another. 





 

[cfree]

This somewhat limited study only contained 17 HCV positive people.  I agree that it is encouraging that so few (only 2) had died after about 45 years from liver related disease. 

In their web presentations Vertex often refers to a recent French study which suggests that 100% of people infected with HCV will develop cirrhossis if they live long enough. According to the study quoted by Vertex most of us are aging, have had the virus for decades, and will experience decreasing immune response with associated increasing liver damage.

I'll have to find the study and post it here.

Thanks for posting the information.  I hope there are new treatments coming that can help us out in the near future.

Best,
Willy

Only 1 out of the 17 died of liver disease( 2- total got liver disease but only 1 died from it). That's about 5.9% with Hep C that died of liver disease.

Of the 8551 recruits without infection, 2226 (26%) had died by this time, 119 from liver disease. That's about 5.35% without Hep C that died of liver disease.

Those without Hep C died of liver disease almost as much as those with Hep C !

What we don't know is how much alcohol or smoking the entire group of 8568 military recruits did. But I bet it was more than 8551 average citizens do now.

The study is somewhat limited by the 17 who had Hep C , but not by the 8568 total in the group.

As someone who has been alcohol free for the past 32 years, I find this study very reassuring.

[willy]

I'd guess that you could also infer that since the disease was not discovered till much later (they couldn't test for it's existence till about 1988) that these people spent their lives not knowing that they had HCV.  What might the result have been if they HAD KNOWN and had made been able to make lifestyle changes?  (no alcohol, no smoking, better diet, avoidance of hepatoxic substances)

I wonder if there are other blood stashes such as these?  It would be interesting to find a larger group of infected people and examine how the virus affected them long term.  We might find out better about the progression of the virus.  One thing is for sure; the bulk of infected people are now entering the years where the immune system declines and damage accelerates. 

best,
Willy

[cfree]

[

Only 1 out of the 17 died of liver disease( 2- total got liver disease but only 1 died from it). That's about 5.9% with Hep C that died of liver disease.

Of the 8551 recruits without infection, 2226 (26%) had died by this time, 119 from liver disease. That's about 5.35% without Hep C that died of liver disease.

Those without Hep C died of liver disease almost as much as those with Hep C !

What we don't know is how much alcohol or smoking the entire group of 8568 military recruits did. But I bet it was more than 8551 average citizens do now.

The study is somewhat limited by the 17 who had Hep C , but not by the 8568 total in the group.

As someone who has been alcohol free for the past 32 years, I find this study very reassuring.

Sorry, my post above is wrong!

My math was good , but  I was way off in the way I pulled the stats apart.
How could I have thought I was smarter than all the experts that did the study?

I still think it's amazing that of the 17 recruits with hepatitis C only one died of liver disease.

Of the 8551 recruits without Hep C 119 died from liver disease.

[Al]

Hep C doesn't have to kill you to interfere in your life substantially.

Indeed. How can one measure the psychological & physiological stress that it inflicts on you?

[OZ]

It would be interesting to know the cause of death of the other people, as many other illnesses are a result of Hep C, diabetes, autoimmune diseases, some lymphomas.
And how many more will die from hcv or related illnesses. 
OZ

[willy]

Hep C doesn't have to kill you to interfere in your life substantially.

Indeed. How can one measure the psychological & physiological stress that it inflicts on you?

Actually, I believe that psychology does employ some statistical methods to measure stress.  It is much more difficult to prove that the physical is manifested from the psychological.  They can't even prove cigarettes cause cancer. (not in a courtroom anyway.... )

I've got a number of friends that died from liver failure, cirrhossis, etc.  To the best of my knowlege they may have also been positive for HCV, but that doesn't mean they were tested for it or even diagnosed by autopsy.

Furthermore...... what of any people that became infected after the blood vials were stored?  Could these people also have become infected and died from HCV but also gone undiagnosed? 

I am only here because I INSISTED on getting tested in 2002.  The doctor tried to talk me out of it.  He then forgot to notify me that I'd tested reactive for antibodies.  This is a person who is TRYING to see if they have HCV in 2002.   

One might imagine that a case or two could have slid by undiagnosed, particularly before these was even a name for HCV or decades before they could test for and prove the infection.

best,
Willy

[cfree]

Hep C doesn't have to kill you to interfere in your life substantially.

Indeed. How can one measure the psychological & physiological stress that it inflicts on you?

Actually, I believe that psychology does employ some statistical methods to measure stress.  It is much more difficult to prove that the physical is manifested from the psychological.  They can't even prove cigarettes cause cancer. (not in a courtroom anyway.... )

I've got a number of friends that died from liver failure, cirrhossis, etc.  To the best of my knowlege they may have also been positive for HCV, but that doesn't mean they were tested for it or even diagnosed by autopsy.

Furthermore...... what of any people that became infected after the blood vials were stored?  Could these people also have become infected and died from HCV but also gone undiagnosed? 

I am only here because I INSISTED on getting tested in 2002.  The doctor tried to talk me out of it.  He then forgot to notify me that I'd tested reactive for antibodies.  This is a person who is TRYING to see if they have HCV in 2002.   

One might imagine that a case or two could have slid by undiagnosed, particularly before these was even a name for HCV or decades before they could test for and prove the infection.

best,
Willy

I'm losing faith in this study.  It says:
 "It is also possible that some study subjects who were free of the infection at the time the blood was drawn developed it sometime during the next 45 years."
  If they didn't retest from for Hep C in this group:

 "Of the 8551 recruits without infection, 2226 (26%) had died by this time, 119 from liver disease."

a lot of them may have contracted Hep C from1954 to 1996 . If they examined medical records  shouldn't they have come up with at least one or more that tested positive for Hep C in the mid 1990's? They don't have a list of those so how accurate could this be?

However the 1 out of 17 should still stand up. I still think it's amazing that of the 17 recruits with hepatitis C only one died of liver disease.

[Straight__Up]

The problem I have with this study and a lot of others is calling HCV  a "liver" disease, which minimizes the  definition and consequently the awareness of the potential impact, when in fact it can be so much more,  as Oz said.  You could just as easily call it a disease of the immune system,  which in my little  opinion is  far more accurate.  But since they didn't, we've been stuck with  "if your liver's ok, you must be too"  which as we know is not necessarily true at all, and a great deal misleading.     

Live long enough and you'll develope liver damage, Vertex says.  Well, who won't if something else doesn't kill you first.  And sure, if you do nothing about your health whatsoever and continue  with a unhealthy lifestyle  with no measures to combat the virus and it's resultant manifestations, that may be sooner rather than later, it's logical to assume.  That is a little something a drug company won't mention. They don't  seem to include preventative or corrective health measures (that they would rather not have us know about) in their dire predictions. 

And on what basis are 17 military recruits who had blood drawn over 50 years ago representative of the population at large, either then or today.  What about a group of 17 people from New York City or somewhere else.  It's just too small to have any real statistical depth and they admit it.

The stated limitations of the study negated the implications, seems to me. They had the "limited ability to say definitely."  In other words: we can't say anything.
 
 "Knowing how often serious liver disease actually results from hepatitis C infection would help in deciding whether widespread screening and treatment for hepatitis C is reasonable."

They said liver problems "may not" develope frequently over the years from infection at a young age, but liver problems "appear"  to be more commonly detectable over time in those with long term HCV.

Turns out they know nothing significant.  For this astounding piece of "news" they get a paycheck and published.   



 

[robin]

Another consideration is life expectancy. People are living much longer so it is much easier to see the long term effects of having hepatitis C and if you live longer with the virus...you will or should have an increased death rate from liver related causes. Keep your spirits high...robin