Hepatitis C Outreach Project Blog

Since I became aware of the possibility of infertility as a side effect of interferon therapy (formerly used as a cancer treatment) I have been desperately trying to make women of childbearing age and parents aware of it.

 I have made presentations to numerous women’s organizations and to the Congress on Women’s Health, attempted to get the Society for Women’s Health Research on board and written extensively about the need for education and outreach programs designed to prevent the need to make this choice.

In other words, prevent the preventable when it comes to Hepatitis C.

First, prevent hepatitis C. Second prevent the need for immediate treatment through behaviour modifications to lifestyle + medical monitoring. Third, offer complete access to information concerning options prior to making decisions.

So, by chance I happened to watch the Today show segment September 4th, 2007 where former cancer patient, Lindsay Nohr Beck was facing cancer treatments as a young woman of 24. She asked a question that her doctors did not know the answer to:  Would chemotherapy make her infertile?

Once again this comes to the fore. The discussion is likely available on the Today website.

Here are the key points from my point of view: doctors do not know about the impact of their advice outside of their own specialty or from the patient’s personal point of view. Few ask.

Do not expect your Gastroenterologist to know in depth about the possibility of infertility, neurological side effects or anything outside the narrow tube known as viral load reduction. That is, by and large, all they know well because it is mostly what is discussed in journals in their specialty.

For information on statistics of transmission in populations (public health), epidemiologists not gastroenterologists/hepatologists are better sources of information. however, on a personal level, risk is either 0 or 100%, in every case.

If your interest is in what the virus itself is capable of, a virologist, such as David Gretch at the University of Washington is the extert on the subject. Again, not the gastroenterologist or hepatologist.

 Do your own research, consult other specialties and most importantly, have the different specialties you are receiving care from TALK TO EACH OTHER about your care prior to developing a strategy for you. You need to do your research as well to motivate them to do this.

 A patient, as in Lindsay’s case, may have goals and values beyond the immediate treatment results, particularly if time is on her side.  The patient and doctor are very often not on the same wavelength at all. Always clarify this with the doctor. Are you both on the same page? Is it emergent that you take the doctor’s advice? Do you have time to explore other options? 

News? Not really. But it bears yet another discussion because the motivating factor is going to be the patient’s persistence.

But shocking, I am sure, to many advocates and patients in the Hepatitis C internet universe who remain doggedly in the “HCV is a liver disease and therefore, only a hepatologist or gastroenterologist knows anything about it” school of thought. Listen, consider the source, and then try to find some unbiased source of information. Check out the answers you are getting. Get a second opinion, even if in another specialty and insist on a independent point of view.

 While these specialties do know about the results of clinical trials regarding the liver, few may know about the potential problems such as infertility in young women or young men, skin problems, autoimmune flares and so many other potential issues. People in clinical trials are vetted to exclude co-existing conditions that very well may apply to you. And they seldom look at the personal goals and aspirations of the patient. You need to know. As always, a clinical trial is NOT free treatment. It is a human experiment. Bear this in mind. You are not receiving care with your own personal life as a consideration. A clinical investigator is a researcher who is limited to the interests of the research, not the individual.

 Interferon administered in childhood, adolescence and even  young adults is one of those really grey areas that needs more research into problems that could arise, such as infertility. Doctors at the NIH have repeatedly said this is of high concern.

 While new cases of HCV may, indeed, be decreasing in some populations, we don’t know that it is decreasing across the board until we have routine testing programs, education and outreach to populations at risk from a number of factors, not just one or two.

No education, outreach or routine testing + lots of tattooing, risk behaviour, including use of alcohol and high rates of childhood obesity in non IVDU populations = a generation at high risk of liver disease and potential complications of premature treatment (the specialists say, without context, that the younger you are the better chance of responding to te treatment) It also is a threat to the blood supply and organ and tissue donation programs, including live donor programs.

When are we going to figure out that we really should be preventing the need for the decisions in the first place? When are we going to identify the need to educate about the decisions being made that pre-date risk behavior and address them?

So, when people ask me: Why didn’t my doctor tell me this could happen? My answer is usually: The doctor didn’t know.

 HCV is a systemic virus. It is not a liver disease. It can be prevented. 

However, when infection is new, options exist to prevent progression of the disease. So, early detection is critical.

That means routine testing and moving the discussion beyond viral load, which is not the defining characteristic of the disease.

Lindsay has a website for those who want options regarding protecting fertility: Fertilehope.org

 “Our mission is really simple,” Beck said. “We help cancer patients. Our goal is to make sure every patient is informed and then help them to make decisions.”

Hepatitis C Outreach Project’s core mission exactly. Since 1992 our goal has been to make sure people are educated, have access to information about HCV and access to testing so that they can make decisions about their health and life.

And, we need to use every resource, even when it is not HCV specific, or we think it isn’t. See, Linsay likely doesn’t know about the HCV epidemic and how affected her generation is by it. But she has founded a resource that is going to help people with HCV.

We strive to prevent the disease from spreading.

 I still think we can. But time is running out.

Teresa Hanbey

www.hcop.org

Heavy Drinking Exacts Toll on Women With Hepatitis C
Thursday, January 25, 2007

Imbibing eliminates survival advantage over men, study finds

THURSDAY, Jan. 25 (HealthDay News) — Heavy drinking slashes the life spans of women with hepatitis C, a new study says.

Publishing in the February issue of Alcoholism: Clinical and Experimental Research, the researchers noted that women with hepatitis C tend to live longer than men with the virus. However, this study found that heavy drinking eliminates that survival advantage in women.

The study analyzed 132,468 hepatitis C- and heavy drinking-related deaths in the Multiple Cause of Death files of the U.S. National Center for Health Statistics.

They found that women with hepatitis C who were not heavy drinkers died at an average age of 61, compared to about age 49 for women who had hepatitis C and were heavy drinkers.

Among men with hepatitis C, heavy drinking lowered the average age of death from about age 55 to age 50.

“Previous studies indicated that alcohol use is a risk factor for HCV (hepatitis C virus) disease progression, but they seldom examined the effect on women and men separately,” study author Chiung Chen, a research analyst at CSR Inc., said in a prepared statement. “Even fewer studies were able to examine the effect of alcohol on HCV mortality. Our study provides empirical evidence to fill the gap.”

CSR Inc. conducted the study under contract with the U.S. National Institute on Alcohol Abuse and Alcoholism.

SOURCE: Center for the Advancement of Health, news release, Jan. 25, 2007

Copyright © 2006 ScoutNews, LLC. All rights reserved.

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As fall is upon us so, too, are the workplace fund drives. Hepatitis C is proud to participate in employee giving programs that allow donations through payroll deduction or as one-time gifts and gifts with matching employer donations.  This strategy has been used acxross the country and in major corporations who also match emploee gifts. From Microsoft to NIKE, to United Way, please take a look at your company’s policies and make hepatitis C , liver cancer and liver transplant your priority this year.

Contributions received will assist the Hepatitis C Outreach Project to continue and to expand our mission to improve the awareness of hepatitis C and the quality of information available to patients and healthcare providers.In addition, it will help us inspire researchers to include hepatitis C in their research proposals to increase the knowledge base of this disease, from women’s health, to neurological manifestations of hepatitis C, to co-infection, to risk factor identification and minority infection awareness, infection control in the tattoo and spa industry, and many other “off the radar” issues we face.

Many state governments have charitable fund drives for their employees. Each state has its own eligibility criteria. If you wish to designate the Hepatitis C Outreach Project for your contributions and your state requires information or documentation, please contact us and let us know what we need to do to qualify for your fund drive
.
Some United Way campaigns allow unlisted charities to receive your contribution. If Hepatitis C Outreach Project is not listed in your United Way brochure, you may still be able to contribute through the “Donor Option” feature that many local United Ways now offer. If your local UW has the donor option, write the Hepatitis C Outreach name and address in the space provided on your United Way pledge card:

Hepatitis C Outreach Project
7316 N. Mobile Avenue
Portland, OR 97217

Finally, many corporate giving campaigns allow a donor to write in a charity of choice. Lists are often provided of eligibleorganizations, but the list is not limited. You can add Hepatitis C Outreach even if it is not specifically listed.

You can still designate the Hepatitis C Outreach Project as your choice this year simply by writing the above information into the space provided.

The Hepatitis C Outreach Project is very grateful for our past contributors and we hope that you will continue to support our mission in the fall 2006 pledge drive in your community.

We are a 501(c)3 charitable organization under the Internal Revenue Service Tax Code.We are listed with Guidestar.org[size]

We can’t do very much without your help and support. Thank you from all of us and all of those who have benefitted from your generous donations.

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 Received this week on the HCV  Forum:

THE CDC WAS SUPPOSE TO SEND A LETTER TO THE AMERICAN PEOPLE & IT NEVER HAPPENED. IT SUPPSEDLY WASS DUE TO THE LACK OF FUNDS FOR POSTAGE. SEVERAL HEP C GRROUPS SENT STAMP & WERE TOLD TO STOP. TO DATE THAT LETTER HAS STILL NOT BEEN SENT. WHY ?

***************************************************

The “Stamp Out Ignorance” effort was an Hepatitis C Outreach Project awareness effort.

It was not the CDC but Surgeon General Satcher who tried (along with HCOP) to get that letter out. It is a long story, the letters should have been in many laguages and an extensive outreach effort begun  Hepatitis C Outreach Project was supposed to have a press conference with Dr. Satcher to get out the public awareness. Didn’t happen. 

The Surgeon General’s office  received THOUSANDS, literally, of stamps.

Still, nothing happened, except that D. Thompson of the Surgeon General’s office called me personally and asked me to stop the campaign because the bags of mail were piled high and they could hardly navigate around them. In exchange, the press conference was offered.

I take a positive view that so many were willing to send in just one stamp. Maybe we need to revive this effort?

This week Surgeon Generals Carmona, Koop, and Satcher testified to Congress on the political interference that has resulted in this (and other) public health crisis and the lack of sound scientific information reaching the American people. Integrity. There is no substitute for it and I commend and thank hese doctors for their courage.

Evidently, the Bush Administration is said to be  the worst. Frankly, there is enough blame to go around because our presidents allowed an epidemic to take hold and were “asleep at the wheel.”

Write to Senator Ted Kennedy and tell him about this. In fact, let everyone you know about this, media, public servants, local health department people.  They have to know the truth before I fear efforts to rewrite history and CYA already have begun. PR people rewriting history as we speak. Tghe pleas and the STAMP OUT IGNORANCE EFFORT may even still exist on a GOGGLE somewhere.

If so, save them as it matters to have evidence that the HCV community came together en masse at least once in a bona fide grassroots effort (as opposed to the miriad astroturf efforts) Hepatitis C Outreach Project has been trying for 15 years. And when I say we, I mean WE, the hepC community.

I am still working on this and I hope these brave doctors will finally be heard. We are working with media right now to tell the real, honest story. Theses doctors may prove to be what will break open the log jam.

Finally, the CDC has done NOTHING of significance, in my opinion, except waste time and the few resources available. When you see websites towing the CDC party line, evaluate that against this new information from former Surgeons General.  They are giving you critical information.

I promise I will not give up. Don’t you give up, either. We have to stick together or nothing will come of this effort either. Be fearless, the truth will come out and we will get the message out so this epidemic is not swept under the rug any more.

 Teresa Hanbey

So, as we said in our invited presentation to the Consensus Management Conference on Hepatitis C, let’s connect the dots: 

Stamp Out Ignorance, Dr. Satcher, the American Public Health Association, and Hepatitis C Outreach:  http://www.medhelp.org/forums/Hepatitis/messages/36348.html

Doctors don’t test for Hepatitis C:  http://www.voy.com/17059/2/97.html

 Body decor raises risk: http://www.voy.com/17059/3/37.html

                                  http://www.voy.com/17059/4/223.html 

                                  http://whyfiles.org/206tattoo/4.html

Statement of Dr. Koop: http://www.voy.com/17059/5/180.html

The risk factors:    http://www.voy.com/17059/5/118.html

President Clinton’s last minute Executive Order:  http://www.voy.com/17059/5/17.html

 WebMD and Hepatitis C Outreach on body art: http://www.healthboards.com/boards/showthread.php?referrerid=232695&t=59158

Our kids:

 mother to child transmission: http://www.voy.com/17059/1/32.html

Your baby wants  body art: http://www.webmd.com/healthy-aging/guide/your-baby-wants-body-art 

Childhood obesity and the liver: http://www.ijppediatricsindia.org/article.asp?issn=0019-5456;year=2007;volume=74;issue=4;spage=401;epage=407;aulast=Mathur

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The evidence for the need to test routinely is mounting.

 Well, in fact, it has been evident for a long time as I have accumulated the studies and stories regarding adolescents and written about it, and since presenting the information to the American Public Health Association in 2000: their desire to be tattooed and the statistical prevalence of high risk behavor, sexual and otherwise, among adolescents and young adults.

Sixteen and a half percent of young people between 12 and 17 drink alcohol.

Thirty seven percent of those 16-25 are tattooed. (Judy Woodruff on Colbert Report)

Studies have shown consistently high rates of anal sexual contact (it’s not really sex, right?) alcohol use and drug experimentation among children as young as 12.  Add to the evidence that these risky behaviors are  clearly linked to rates of hepatitis C infection and please tell me, CDC, why this is not a message included in your articles? Is it because the right and left hand are not communicating? What’s the deal here? We hear from the Kellogg Foundation, the Kaiser Foundation (http://www.kff.org/hivaids/index.cfm) and   many other organizations about risky behaviors, high risk groups, and rates of HIV, yet, the silence about hepatitis C is deafening. Why?

 Alcohol is toxic to the liver, Hepatitis C is contracted at a young age and often diagnosed 30 years or more later, after damage has been done by alcohol use and other factors. This information has easily been available for the last 14 years.

We have years and years of studies on this. We have years of studies on the cumulative effects of smoking on the liver. We have solid evidence that tattooing is, at least, highly suspect in transmissions. We do not yet know all risk factors. Yet, we STILL have no public health program to reach out to the youth, particularly minority youth, who are being infected at rates likely higher than anyone suspects. Why?

Our troop in Iraq are on treatment for hepatitis C after being diagnosed with strains found only in the middle east. Think about that, those of you familiar with being on treatment. Young soldiers in the field in Iraq are being treated with interferon and ribavirin as they patrol in their vehicles and on foot, interacting with the Iraqi people.

I have been asked to put together material for a public school event on February 2nd to reach 12,000 people. I am struggling to get it together as donations are severely down this year and I am not sure at this point that I will be able to meet the deadline.

 Please, put two and two together when you read news pieces like this one:

“WASHINGTON (Reuters) - Nearly half of all U.S. high-school students admit to recently drinking alcohol illegally, and most of them were binge drinkers, according to a government survey published on Tuesday.

These binge drinkers — who had five or more drinks in a row — were more likely to have sex, fight, smoke or use drugs, the study by the Centers for Disease Control and Prevention found.

“Our study clearly shows that it’s not just that students drink alcohol, but how much they drink that most strongly affects whether they experience other health and social problems,” said Dr. Jacqueline Miller of the CDC’s Alcohol Team, who led the study.

“It also underscores the importance of implementing effective strategies to prevent underage and binge drinking, such as enforcing the minimum legal drinking age and reducing alcohol marketing to youth, which can help us change social norms regarding the acceptability of underage and binge drinking.”

Across the United States, the minimum drinking age is 21, while most teens leave high school by age 17, 18 or 19.

Writing in the journal Pediatrics, the CDC team said they analyzed data from 15,214 high-school students (aged 14 to 18) who completed the 2003 Youth Risk Behavior Survey.

They found that 45 percent of the students admitted having drunk alcohol in the past month. Of these, 64 percent were binge-drinkers.

And the binge drinkers were not simply experimenting — 69 percent reported having done so more than once in the past 30 days.

Teen drinkers in general were more than twice as likely to be sexually active as non-drinkers, the researchers found.

They were more than four times as likely to smoke cigarettes and more than twice as likely to have been in a physical fight, the researchers found. These rates went up even higher for binge drinkers, they reported.

The binge drinkers were more than five times as likely as non-drinkers to be sexually active, more than 18 times as likely to smoke cigarettes, and more than four times as likely to have been in a physical fight. They were also far more likely to smoke marijuana and attempt suicide, the researchers said.

Drinkers also did more poorly in school, according to the survey.

Among other studies on teenage alcohol use, in September the Substance Abuse and Mental Health Services Administration found that 16.5 percent of 12- to 17-year-olds admitted to drinking. That study included students younger than high school age.

The 2006 Monitoring the Future survey, done by the University of Michigan and published in December, found that 75 percent of 12th graders, the oldest high school students, had tried alcohol. “

Please put Hepatitis C education and awareness on your list of New Year’s Resolutions.

Silence is no longer an option.

Teresa Hanbey, Executive Director

Hepatitis C Outreach Project

7316 N. Mobile Avenue,

Portland OR 97217

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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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