Hepatitis C Outreach Project Blog

Since viral load and liver disease severity have never been proven to be associated, no matter how hard they’ve tried, the real cure will be an anti-fibrotic. Regenerating the health of the liver. This is a beginning, I hope:

Regenerating hope for liver disease
Published: 15 September 2006

A protein essential in the process of liver regeneration has been identified by a team of scientists, in a discovery that could lead to treatments for serious liver diseases such as hepatitis.

The protein, caveolin-1, was identified as being necessary for regeneration by a team of scientists from the Institute for Molecular Bioscience at The University of Queensland, and the University of Barcelona.

“The liver has an amazing capacity to regenerate and repair itself after damage, such as a heavy session of drinking,” Professor Robert Parton, one of the team leaders, said.

“But in some diseases, such as hepatitis and cirrhosis, the liver is so damaged that it loses this regeneration capacity.

“Identifying that caveolin-1 is an essential ingredient in the process of liver regeneration brings us a step closer to finding treatments for people whose livers are not able to heal themselves.”

The team members made their discovery by comparing normal mice with mice that were unable to produce caveolin-1.

The livers of the vast majority of normal mice were able to regenerate after damage, while three-quarters of the mice without caveolin-1 died if they sustained significant liver damage.

“The livers of mice that couldn’t produce caveolin-1 were not significantly different to normal mice before any damage occurred,” Professor Parton said.

“This suggests that other proteins may compensate for the lack of caveolin-1 when the liver is functioning normally, with its essential role becoming apparent only when the liver is injured.”

The team’s findings have been published in the current edition of top international journal Science, on the eve of UQ’s Research Week.

Research Week celebrates the outstanding research that is produced at The University of Queensland with public forums, seminars, workshops and the annual UQ Foundation Research Excellence Awards.

Media contacts:
Professor Rob Parton – 07 3346 2032
Bronwyn Allan, IMB Communications – 07 3346 2134 or 0418 575 247

Here’s the scoop on this:

A comparison of biopsy results and viral load numbers has never shown a correlation. That is, people can have a very high viral load, and do, without liver damage. Conversely, people can have a low viral load and severe damage to the liver, cirrhosis, or be on the verge of needing a transplant.

Therefore, measuring success of treatment has more to do with regeneration of liver tissue that has been damaged than by the viral load number.

The FDA is taking this matter up at a meeting this year. Up to now, a biopsy has not been regarded as a gold standard for measuring treatment outcomes. They are going to take another look at this. We’ll see, eh?

Viral load, however, HAS been linked to transmission rates through sexual contact and giving birth to a positive child. So, the risks of this percent or that percent changce of tranmitting it to someone else is highly influenced by the amount of virus the “transmitter” has. True also for tattooing vs needle sticks. A tattoo machine, for example, pierces the skin at 3,000 per second (I hope that is correct, I didn’t look it up this time) A contaminated surface? Anybody’s guess.

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Posted by dlmd on our message board.

Last night 9/26/06 on Access Hollywood on NBC they did a very short story on Steven Tyler the front man & lead singer for the band Aerosmith. He has finished his Hepatitis C treatment & declared he is Hep C Free. Read about it here & make your voice head as well.

Interesting Thread about it here

News Article here

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A number of factors have come together recently to underscore the need to implement educational efforts toward young people.

HIV remains a serious public health crisis. Every time I read an article in the media on HIV I wonder why we, as a nation, are sleeping through the hepatitis C crisis. It is the largest epidemic we know nothing about and which gets mentioned almost never in discussions of infectious diseases. We have huge public educational campaigns directed toward HIV awareness, as it should be. How much more would it cost to inject information about hepatitis C into existing efforts?

After twenty years of HIV research in medicine, public health and awareness education, we are still unable to reach the at-risk population namely, our young adults. In terms of Hepatitis C, most people are diagnosed in their 50’s after an infectious likely of 30 years or more duration. Do the math. According to the Portland Oregonian, young people are at highest risk for HIV and account for most new infections. Would it surprise anyone that they are at highest risk for hepatitis C, too? If routine testing makes sense for HIV, doesn’t it make as much sense to test routinely for hepatitis C? These two articles have inspired this entry. Hepatitis C Outreach Project has been about raising the issue of routine testing for HCV since 1992. We make the case at every opportunity, including making a presentation at the 2002 National Institutes of Health Consensus Management Conference in 2002. There, a presentation we titled “Connecting the Dots was made by our former medical director, Dr. HA Aronow of Los Angeles.

Every time I bring the need for programs providing routine testing (And not those home kits, either. A real blood draw test) up at conferences and meetings I am told that routine testing is too expensive. If routine testing prevents further transmissions, saves a ton on expensive and inadequate treatments, and protects our blood supply and the supply of useable organs and tissues, isn’t that worth the expense of a relatively inexpensive test?

If we can prevent the need for expensive pharmaceutical remedies, isn’t that worth some consideration? A study by Sue Goldie at the Harvard School of Public Health suggests that this is not unrealistic in the least.

Literally, those at most risk for hepatitis C are those who are our blood and tissue supply and who will provide the supply of donated organs (note: sign your organ donor card and talk to your family today) over time. Rates of organ donation are down because we have instituted safety laws that are, indeed, saving young lives. That makes this an even more critical issue. We have no margin of error. The number of available organs is going down as the demand for them increases.

Did you know that getting a tattoo or having a sexual partner with hepatitis C excludes you from the blood donor pool?

Did you know that the molecular test for hepatitis C takes too long to come back on a donated organ? The organ is not viable after a short period of time. Transplant teams must rely on the less exact science of antibody detection and risk transplanting an infected organ with an occult HCV infection.

Despite an effort by former Surgeon General Satcher in the in the 1990’s to warn the American people about hepatitis C (which was never done), today we still have no realistic funding or a serious public health effort to implement education and awareness of hepatitis C.

Quite the reverse. The CDC has only acknowledged risks like sexual transmission, poor infection control practices and tattooing reluctantly. While millions are spend on swine flu, anthrax, SARS, and bird flu, a very real and present threat is right here, right now. And at least 5 million people are infected.

Connecting the dots and exploring the implications of the information results in some fairly sobering conclusions. If the virus lives for up to 72 hours on a surface, a sterile field in a tattoo parlour is necessary to ensure that the virus is not spread from surface to implements to clients. But studies of the attitudes and practices in the tattooing community have not yielded much in the way of confidence. There is no consumer law with any teeth, anywhere. There are no schools of tattooing science.

A Texas woman was recently awarded $550,000 from a licensed, inspected commercial shop in San Antonio. The same researchers published warnings and tips on choosing a shop. But, can this practice, in its current form, be trusted at all when the machinery used in the practice cannot be completely sterilized and the “sanitizer” used has never been tested against the hepatitis C virus?

What about the mechanisms (tube systems) used in tattooing? They cannot be autoclaved (not all states require an autoclave, licensing, and inspections by the way) and so if a little bit of blood is left in the machinery’s tubing…….

If, and this is not a big if, young people are at highest risk, then why haven’t our public health experts targeted this population for testing and education? We have been diagnosing 20-30 year old infections in 40-50 year old people for the last 10-15 years since I founded the Hepatitis C Outreach Project. Why hasn’t anyone else been doing the math? That lag time, between transmission and diagnosis, is deadly. Liver disease can be put on the fast track to cirrhosis, liver cancer and liver failure through moderate social alcohol intake, smoking, and fat in the diet. In combination with hepatitis C, is it any wonder the rates of liver cancer are at an all time high in the United States? With the advent of live liver donation (which requires a liver biopsy of a healthy person), we find that one-third of potential liver donors are found to have liver disease! These are people willing to donate part of their healthy liver and who had no sign of liver disease and who had passed through the medical screening with flying colors to that point.

And, when the CDC does prevalence studies, why don’t they look at a constellation of factors that come together in research done on this age group (say 15-25 for argument’s sake) instead of piecemeal studies that really do not point in any definitive direction? Maybe we need different kinds of scientific studies that ask better questions and include more relevent variables to mount a realistic response so this public health crisis won’t get any worse? So far, the CDC seems convinced that prevalence rates are falling. I am not convinced. If you are not routinely testing, how can you know this?

If you look at where the money that is dedicated to hepaitis C is going you will find the stream of funding going to, primarily, programs targeting IV drug use. The CDC grants are going to public health efforts to educate active IV drug users and to fund (though this is somewhat limited) needle exchange programs. What are we doing to prevent your young people from getting that far?

And what about everyone else? Where can people get tested and what needs to happen before a test is even suggested by a doctor or someone else?

The Univeristy of Michigan did a study and found thatprimary care physicians do not order tests on people who have risk factors because people don’t know what the risk factors are and consequently don’t report them to the doctor so the doctor would order a test. If tests had been ordered, the prevalence rate in that study was about 10% which is in contrast to the estimated 1.8% that our federal experts have estimated. Different criteria, different results.

So, relying on risk factors which, by the way, have changed each time I have seen a CDC presentation and ALWAYS includes a piece of the pie that says ” unknown risk factor ” on it, is not producing results in identifying hepatitis C infections. Think about the methamphetamine using parents of very young children. Now think about paraphernalia left around by zoned out parents for the children to prick their little fingers on. We have a problem that we have no way to measure.

Prevalence rates are extremely high is in the prison population. A population, by the way, that will, by and large, return to the community. Consider ANY blood exposure a potential risk: college date rape, botox parties, manicure and spa services, and domestic violence. , substance abuse, medical procedures, even sexual contact.

No, people are more often diagnosed when they have begun to have symptoms of liver damage or nervous system damage brought on by hepatitis C. By then, options are severely limited. This is particularly true if you are African American, female, have other health problems, or are uninsured.

An early diagnosis, as with any other disease, offers the widest range of options. Most importantly, with hepatitis C, abstention from alcohol, smoking and fitness levels can actually preclude the need for treatment and even prevent liver damage from occurring in the first place. Those who would progress anyway have the option of monitoring, planning and choosing among options varying from how to manage and care for themselves and how and when to seek pharmaceutical intervention.

So why would early diagnosis (in the form of routine testing) be a good thing?

Well, people can take better care of themselves. We now know that progression of the liver disease is impacted by lifestyle choices that can mitigate damage.

Pharmaceutical treatment can be risky (risk to female fertility, potential for side effects of long term duration). The remedies are measured by standards that will shortly be reviewed by the FDA. We now know that these standards are likely inadequate. Additionally, the treatment often require additional treatments to mitigate side effects. The estimated cost of treatment can be doubled, or even trebled, with the inclusion of blood enhancers, and other expensive ad-ons.

Access to pharmaceutical treatment and care is limited to those with excellent healthcare insurance. While there is help available from the pharmaceutical companies for medication there is no support for ancillary care, doctor’s visits or other medications.

African Americans have the highest rates of infection and the lowest rates of response to the pharmaceutical treatments. African Americans have a slower rate of progression, however.

Latinos have higher prevalence rates of hepatitis C and higher rates of liver cancer than any other group.

And, remember this is a systemic virus. I have only begun by discussion the liver. Hepatitis C has been found in other organs and tissues in the body beyond the liver alone. That research is just beginning.

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…by making false statements to the government and will pay a $180 million criminal fine.

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I was sent this by email. Some of you may have seen it before.I am hoping it will give you some inspiration for your burden, whatever that burden is today; decisionmaking, discomfort, riba rage, whatever. I care and I want you all to know that.

It had no author by the time it got to me, so if you know who wrote it, please let me know so I can make sure s/he gets credit for it.

thanbey

The Answers to “Why Me?”….

A Victim asks how long will it take to feel good.
A Survivor decides to feel good even when things aren’t so great.

A Victim grinds to a halt.
A Survivor keeps putting one foot in front of the other.

A Victim wallows in self-pity.
A Survivor comforts others.

A Victim is jealous of someone else’s success.
A Survivor is inspired by it.

A Victim focuses on the pain of loss.
A Survivor cherishes remembering joy.

A Victim seeks retribution.
A Survivor seeks redemption.

AND MOST OF ALL:

A Victim argues with life
A Survivor embraces it.

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No Safe Alcohol Levels if You’re Infected

By Jeanie Lerche Davis
WebMD Medical News
Reviewed By Michael Smith, MD
on Friday, March 12, 2004

March 12, 2004 — For people with hepatitis C, there may be no safe level of alcohol new research shows. While heavy drinkers have the most severe liver disease, even light or moderate drinkers put themselves at risk.

It’s a word of caution, especially for middle-aged men with heart
disease. Although alcohol in small amounts provides heart
protection, this might not be true for all people.

The study appears in this month’s issue of the journal Hepatology.

Many people infected with hepatitis C never develop serious liver
disease, writes researcher Alexander Monto, MD, a
gastroenterologist with the University of California at San
Francisco.

Those most likely to have severe liver problems: older people,
especially men who are heavy drinkers, and people with long-time
hepatitis C infection.

However, this group of researchers wanted to know how light and
moderate drinking affected liver disease — given recent findings
that a drink or two a day offers some protection against heart
disease for some people.

For heart protection, no more than one drink per day for women and
no more than two drinks per day for men are advised. One drink is
equal to a 12-ounce beer or wine cooler, 5 ounces of wine, or 1.5
ounces of 80-proof liquor.

No Safe Level Alcohol

In his study, Monto asked 800 people — all with hepatitis C
infection — to complete a questionnaire about their drinking
habits and their medical history.

He defined “heavy drinking” as more than two drinks daily;
“moderate” meant one or two drinks daily; “light” was less than one drink daily.

As expected, heavy drinking was linked with more severe liver
problems. In fact, there was no “safe” level of drinking, reports
Monto.

47% of the heavy drinkers had serious liver problems.
Liver disease risk increased at each level of chronic drinking –
even among people having less than two drinks a day.
The damage was less than with heavy drinking, and may have minimal
or no effect — but the chance of damage was there.

Risk for women has not been investigated much until now, Monto
notes. Women in his study did very little drinking — with less
than 50% drinking more than four drinks a week. Monto cautions
against drawing firm conclusions on this data:

In this study, women did not seem to have any higher risk of liver
disease than men did.
Light drinking did not worsen women’s liver disease. Only 12% of
women were heavy drinkers, but did not have more liver problems
than the 88% who drank less or nothing.
Among women who were heavy drinkers, there were varying levels of
liver disease.

Overall, his study shows that some people may have greater
susceptibility to alcohol’s effects, Monto notes. Different
drinking patterns — such as binge drinking rather than daily
drinking — may play a role. Also, older people may be at greater
risk.

His results may be somewhat skewed, since each patient reported his
or her own medical history and drinking habits, he says.

SOURCES: Monto, A. Hepatology, March 2004; vol 29: pp 826-833.
WebMD Medical Reference in collaboration with The Cleveland Clinic:
“Alcohol and Your Heart.”

This month’s journal of Hepatology has what I consider to be a bombshell study. Researchers have shown that smoking, drinking alcohol, and obesity act in concert to raise liver cancer risk by 24-48 times risk seen in healthy people whose exposure to these factors is low.

I cannot emphasize enough to anyone reading this how important this information is if you have hepatitis C, you smoke, drink alcohol (even moderately) and/or have fatty liver disease, or are overweight.

The study design eliminated the effects of hepatitis C and found that the increased risk of having the combination of any of these factors increases the risk of liver cancer dramatically.

Since we know that hepatitis C alone (in the presence of cirrhosis) increases risk of liver cancer, adding any of the other factors would likely increase that risk greatly.

The analysis was done on lifestyle choices made by patients looking back over their entire lives.

Those who had liver cancer were found to have higher rates of smoking than those who had liver cancer and drank heavily, but not by much. The number for smoking was 70%, whereas for heavy drinking (remember, over a lifespan) it was 68%.

Thrity-seven percent of those with with cirrhosis but no liver cancer reported heavy alcohol consumption, and 49% reported long duration of heavy smoking.

On the whole, people carrying extra weight fared worse than those who remained of normal weight or who were lean.

Diabetes did account for increased risk as it was evenly spread out among all the research subjects. Likewise, these results were tabulated after taking hepatitis C and race into acount.

When liver cancer cases were compared to those with cirrhosis only , the risk of liver increased 6-times for heavy alcohol use, 5-times for heavy tobacco use, and 4-times for obesity. These risks were much higher (24 times, 64 times, and 48 times) when liver cancer patients were compared with healthy people.

So, what remains here is the risk of the combination of smoking, extra weight, and alcohol consumption and the high risk these t poses to people for for developing liver cancer.

What is not known through this study, but I am inferring it, is that a sedentary lifestyle that is high in fats, alcohol, smoking exposure (including second hand smoking) does pose a significant risk to people irrespective of hepatitis. Adding hepatitis as another factor can only increase an already risky lifestyle.

We can speculate on many other contributing factors that are much more difficult to measure. The lesson here is to take control of those important choices to reduce whatever inherent risk there may be in your life and lifestyle. You live in denial at great peril to your liver and your overall health.

You cannot go back and undo the choices you have made in the past. You can make better choices today and in the future. Clearly the risk of liver cancer is a combination of many factors which may, or may not be attributed to the presence of hepatitis C alone.

The task now is to take control of those you can while you can. Those with hepatitis C need to pay particular attention to this study. I, for one, am very excited to see this research being done. I congratulate, and thank, the research team at the University of Michigan, who repeatedly are will to undertake these cutting edge studies.

This is a good news study. Lifestyle choice matter and good lifestyle choices significantly matter.
I’m interested to hear your thoughts on this.

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