There IS Hope With Hepatitis C

Although A True Cure May Be Elusive, There Is STILL Hope For Controlling Hepatitis C!!!
(But first we have to know what to believe!)
By Kev Krueger
Cofounder, National Hepatitis C Coalition, Inc.
June, 2005
Updated October 13, 2006

Anyone who has never been tested for hepatitis C (with the exception of those born after 1992) probably should be. Forget about so-called "high risk" groups that so many of our government institutions want us to believe are the only ones at risk for hepatitis C infection. EVERYONE SHOULD BE CONSIDERED A POSSIBLE RISK FOR A DIAGNOSIS OF HEPATITIS C. Most people may have had occasion to be exposed to the virus at sometime in their lives, either through past invasive medical procedures or other methods not often discussed. Early diagnosis by simple blood test can make the difference whether the disease is merely a nuisance, or whether it becomes a full-blown life-threatening illness.

While I'm thinking about it I'm going to answer one of the most common questions we receive from patients lately: Aren't Naomi Judd and that guy from Aerosmith cured? The answer is that these two individuals have both irresponsibly made such claims even though there still is no test that could ever accurately measure such a thing. If it can't be measured, it's pure speculation and VERY irresponsible to claim. The strongest scientific evidence available indicates that hepatitis C is NOT a completely curable disease and what these two folks have said is nothing short of ignorance.

Irregardless, If you've recently been diagnosed with hepatitis C, please know that THERE REALLY IS HOPE, no matter how progressed your disease may be, and no matter what you may have been told. Please read on:

Current methods of testing are just not sophisticated enough to be able to test for signs of the virus in other organs, the lymphatic system, or other parts of the body where the virus is believed to hide, even in spite of an undetectable viral load. This is why there have been numerous cases of organ transplantation where recipients ended up with hepatitis C even though the donor body had tested "clean" of hepatitis C through current methods of testing. This is also why the Red Cross will not take blood donations from anyone who's ever tested positive for hepatitis C. They KNOW that all this "cure" crap is just that: CRAP, and it's important for them to be careful with ALL donors.

It all boils down to the fact that we need MUCH better testing folks, and we may never get it as long as our government is made to believe hepatitis C is already curable. Anyone who claims that the hepatitis C virus is completely gone from their body based solely on a mere blood test just doesn't understand the disease or the limitations of current testing for it.

Mr. Tyler and Ms. Judd both had a couple of similar things to say when they made their claims stating basically that "the virus can't be found anywhere in their bodies". Now, it may be true that the virus can't be found in their bodies by current methods of testing, but that doesn't mean the virus is gone, just unable to be detectable by current testing. It's really more of an indictment as to how lousy ALL testing related to hep C is rather than being proof of anything definite about infection. Please keep in mind also that these people have their own agendas and motives for saying what they do. Don't let them fool you for a second. Neither one of them is any more special than anyone of the rest of us and their shared belief that they're both some kind of special "miracles of medicine" should be seen as highly suspicious. Personally, I just believe it shows the extent of arrogance on the part of both of these people and their lack of knowledge about their own disease.

And to think. . . I "used" to be an Aerosmith fan, and, well, . . . . . . . . enough about that for now. . . . . .

I guess I should say that we do not hesitate to discuss issues here that may be potentially controversial because we believe in the truth - whether it's pretty or not. However we'd like to make it abundantly clear that we are not pointing fingers, nor casting blame in any direction other than towards those who are guilty of spreading false and misleading information about the disease. We're merely stating facts as we know them to be. Please. . . GET TESTED. A simple blood test may just save your life!

As mentioned briefly earlier and In spite of claims made by a segment of misinformed wishful thinkers with hep C, there is no known complete cure for this disease, at least not by definition of that four letter word "c-u-r-e" that most of us know to mean complete eradication from the body (and there is no test available that is sensitive enough to measure such a thing even if it WAS possible). Hep C CAN be put into remission though - also known as "Sustained Viral Response" or SVR, and it's a great thing! It's believed that some folks may be able to maintain an SVR indefinitely, but only time will tell for sure. Those fortunate enough to achieve an SVR should still consider their blood to be infectious and it's wise to continue living a healthy lifestyle (in other words, it's not a good idea to return to drinking alcohol or any other liver damaging habits because doing so may just awake that "sleeping" monster!!!).

Most folks with hep C who've been diagnosed for very long and who've spoken to very many other patients have heard of those who've "gone undetectable" for a while, only to learn later that the virus "came back". This is because the virus was never gone in the first place! Our virus has the ability to hide in parts of the body that aren't detectable by blood testing and nobody knows if the virus is still causing liver damage during this time or not. This is why I say: "If any doctor says he can cure you of hepatitis C, RUN!!!"

There are most definitely unscrupulous medical practitioners out there who are misleading patients by telling them they're cured. We hear about this all the time and frankly, it's infuriating. We also hear from patients who've returned to drinking or other unhealthy behaviors after their doctors told them they were virus-free and as a result, some of these folks have ended up with progressed liver damage because of a virus that was not gone, but merely avoiding detection. Then there are those who have unintentionally infected others because they believed their doctors when they were told they were cured, so they stopped being careful with their blood. This is all due to bad information given to patients that were basically told what they wanted to hear. Don't fall for it!

Unfortunately there's probably little we can do about those who are unethical and think nothing of misleading patients, nor can we help patients themselves who refuse to use common sense in their daily lives. We can only pray that both will wake up before it's too late and hope that the medical professionals in question will stop letting greed be their guiding force. Patients should be able to trust their doctors implicitly, but obviously some are not worthy of trust and have blatantly violated that trust with their own patients. Dishonest and unethical doctors make the good ones look bad. With so many really great physicians out there who are well educated about liver disease, there's absolutely NO reason why anyone should tolerate less than 100% honest and ethical medical care. Your doctor works for YOU, so don't hesitate to question advice or recommendations that don't seem right for you. It's YOUR body, and only you will suffer the consequences of blindly following bad medical advice.

Also mentioned earlier, some of the biggest problems hepatitis C patients face right now are the serious limitations of current testing. There's no test yet available that is sensitive enough to measure absolute zero hepatitis C virus in the body, so it would be impossible to measure a "cure" even if such a thing was truly a possibility. The virus is also believed to hide in other parts of the body, able to avoid detection by current blood testing methods, so herein lies another problem. Even so, we find that there are doctors all over the country who still think nothing of giving patients false hope by telling them they can be cured of hepatitis C. HOW ETHICAL IS IT TO ASSUME WHAT CANNOT BE MEASURED? Shame on those who mislead and take advantage of desperate sick people!

No doctor, government agency, or anyone else has any business claiming that hepatitis C is curable, even though many do. It's really not so much that we know for sure that it could never be eradicated, as much as the fact that there's just no way to measure such a thing because of the testing limitations. Saying otherwise is purely speculation and very dangerous with a contagious disease like hepatitis C. It is nothing short of dishonest to claim something that cannot be accurately measured.

If you have hep C and your liver doctor believes hepatitis C is curable, I have a challenge for him or her: Ask the doctor to prove their belief by taking the blood of one of their so-called "cured" hepatitis C patients (or yours if appropriate), and inject it into their own veins (and insist on being a witness to it). If the doctor refuses but still insists he can cure hep C, you may want to consider finding another specialist who truly knows the disease! Or, if you should possibly find a doctor who's willing to do this, PLEASE LET US KNOW ASAP!!! We'd like to see this ourselves and see if we can't get it on national TV! Of course we'd expect to see ample documentation proving everything is on the up and up. Then we'll see what happens when the doctor is tested after six months and later.

I just want to reveal the truth about all this "cure" nonsense and I don't know any better way than to reveal it in this way. I believe that most doctors know there's no true cure for hep C, and I think it's high time we reveal those who are being dishonest with us so we can spare others. Funny how this dialogue has been online quite a while now and I haven't gotten any takers. . . . hmmmm, I wonder why?!?!!!!

Please don't get me wrong folks, I have no qualms with the medical establishment as a whole, and I have the utmost respect for honest medical professionals and their opinions. I'm very thankful that we're blessed to have good doctors to help us stay healthy, but we do have to be careful who we listen to because people are people and not all are ethical, regardless of their profession. One of my biggest complaints is with so-called medical "experts" who are making false claims about this disease without solid scientific data to support them and patients who want to say and do things publicly without thinking how they might be hurting the rest of us. I also detest those who are all too anxious to repeat bad information as fact, without taking the time to even use their own common sense to question the validity of what's being claimed. We have to use our heads folks, and take much of what we read and hear with a grain of salt.

Unfortunately, the Centers for Disease Control seems to be one of the worst of our government agencies for pointing the finger at hep C patients by promoting a terrible stigma that hurts so many so badly. I'm referring to their belief and ongoing campaign to convince America that the majority of patients with hepatitis C were infected from illicit drug use. I really don't like to have to badmouth people, but when downright misinformation is being published on their website, it's time to bring it to the attention of the public.

The National Hepatitis C Coalition, Inc. REFUSES to wear the stigma that says ours is a "druggies" disease, regardless of what our government agencies or anyone else would have us believe. Where is the data to support the claim that 60% of American's were infected in this way as they claim? It could be true or maybe it isn't, but it's wrong to assume such a thing without solid data to support such a theory, and this data does NOT exist. It's mere speculation and assumption, and it only serves to hurt us all. I've seen some of the so-called "studies" they use to come up with their claims related to this very issue and I'm anything BUT impressed. True: hepatitis C CAN be transmitted through the use of illicit drugs, as can many other blood-borne diseases and we don't deny that. However hepatitis C can be spread in many many other ways too, and because of the very nature of the disease and lack of proper medical sterilization in past years, EVERYONE SHOULD BE TESTED FOR IT!

Many of our nation's health agencies are very good at making claims they cannot support with solid data, and speculating seems to be preferable to just being honest and admitting when they don't know something. Does this sound like good science? I don't think so. Unfortunately though, much of the media runs to the CDC to confirm their information about any disease and they usually believe whatever the folks at the CDC say. You might want to remember that the next time you wonder why we don't hear much about hepatitis C in the media!

It's no secret that prior to 1989, hepatitis C was unintentionally transmitted through blood transfusions and improper sterilization practices within the medical community. This is why it's so unfair to "paint every hepatitis C sufferer with the same brush!" and automatically assume that anyone infected is a former (or present) drug user. The truth is that any situation where infected blood can enter the bloodstream of another person is a potential mode of transmission for this disease. Since no test exists that can tell us when, where, or how a patient was infected, why dwell on these factors anyway? If we're sick, we need help. Shouldn't that be all that matters?

The hepatitis C virus does not die when exposed to air and can live outside of the body for an undetermined amount of time. It may (and often does) remain contagious to others until surgical tools that have contacted infected blood are properly heat-disinfected (by means of an auto-clave). Unfortunately, this was not routine practice within the medical community prior to the 1990's, nor is it routine today in certain establishments like nail salons which exist in non-medical environments. Detergents and bleach don't kill hepatitis C. Heat disinfection does. This may very well be one of the many reasons why so many people are diagnosed with the disease without a known source of infection. It's most definitely another of the many reasons why we believe EVERYONE SHOULD BE TESTED FOR HEPATITIS C.

The CDC are the folks that only recently were denying that any cases of hep C transmission through medical procedures had been reported (see our "Hep C Info" page for links that dispute this). Common sense tells us that much of what these people claim related to hepatitis C transmission is not supported by scientific fact, so PLEASE take anything they say with a grain of salt. With all due respect, these folks don't know nearly as much about this disease as they'd like us to believe and their history proves it. Medicine is not an exact science, but these folks have a tendency to stigmatize entire disease groups before they even know the real truth. Does anyone remember when HIV/AIDS was first discovered and the CDC called it GRIDS? They led us to believe back then that it was a disease only suffered by those in the gay community. They were later proved wrong. They will be again. Trust me.

Another of the many falsehoods about hepatitis C that we hear about is the notion that the virus is transmitted through "bodily fluids" and that it's sexually transmitted, but "only in rare cases". When you think about it, how much sense does that make? Again, hurtful claims not based on solid scientific data. More on this later in this dialogue.

BODILY FLUID TRANSMISSION: There are many websites out there that falsely indicate that hepatitis C can be transmitted through bodily fluids. Of course this implies saliva, sweat, mucus, and if true would make us very dangerous to be around. Not only is this extremely hurtful to those of us who suffer with hepatitis C, but the statement without explanation is downright untrue. Hepatitis C is transmitted through contact with infected blood. Period. Yes, if blood becomes mixed with any bodily fluid, then the risk of infection exists. However those who spread such false information are doing a great disservice to the entire hepatitis C community by not clarifying this. If mere bodily fluids were truly a risk factor for hepatitis C, why is it that the majority of married couples have only one person infected? I've been married for over twenty years myself, and my sweet wife remains negative for the virus at her yearly testing. Wouldn't this be the ultimate way to determine whether the disease was truly transmitted through bodily fluids in the real world or not? Certainly if it was true, the mere sweat from an infected person would transmit the disease to their healthy mate. It is not happening in the real world though, and the medical establishment as a whole knows it. Someone please. . . encourage these purveyors of falsehoods to get a clue!!! Also if this was true, wouldn't doctors and their personnel wear gloves to avoid contact with patient's skin and maybe even wear face masks to avoid the accidental spraying of saliva during conversations? I've heard of it happening to others, but fortunately most medical folks know better and I've never been disrespected in this way personally nor do I expect to. Good physicians who are educated about the disease know that the only bodily fluid that may be infectious for hepatitis C is blood, and people just don't bleed without reason. Even though I'm infected with hepatitis C, my specialist doesn't put on gloves or any other protection before touching my skin during my routine examinations with him, nor do any of his assistants. They all know that the disease is not transmitted in this way. The same is true for every other doctor I see and I seriously doubt that any of them are infected with hepatitis C because of it.

SEXUAL TRANSMISSION: The CDC indicates on their website that hepatitis C is sexually transmitted but only in rare cases. How many other diseases do you know of that are "sometimes" or "rarely" sexually transmitted as claimed by the CDC? Have you ever heard of syphilis or gonorrhea being "rarely" transmitted? No. It's because both are truly STD's - otherwise known as sexually transmitted diseases. Hepatitis C is NOT, and there's a BIG difference! Under normal sexual circumstances where NO BLOOD is involved, HEPATITIS C HAS NEVER BEEN PROVEN TO BE SEXUALLY TRANSMITTED. PERIOD! We all know that there are certain sex practices which can cause bleeding or somehow involve it, and in these cases, there's definitely a risk for transmission of hepatitis C. This is not the norm though, and because of this, it's not appropriate to call the disease "sexually transmitted". This kind of misleading information is causing many heterosexual couples to unnecessarily avoid intimacy with each other, and it's wrong for anyone to make such unsupported claims.

We believe that part of the reason for all of the misinformation about false modes of transmission of hepatitis C is to draw attention AWAY from the true source of many of the infections in America. The fact is that the medical establishment has been an unintentional source of hepatitis C transmission for years through improper sterilization and just plain human carelessness. This isn't necessarily the fault of the medical folks because they didn't know it was necessary to be so meticulous with surgical tool sterilization prior to the beginning of study on the virus in 1989, and I don't mention this to cast any dispersions on anyone. I mention this merely to further show why EVERYONE NEEDS TO BE TESTED FOR HEPATITIS C!

The practice of heat disinfection via autoclave was not routine prior to 1989, so there's no way to ever know how many people were accidentally infected through seemingly innocent invasive surgical procedures prior to that time (even with something as seemingly innocent as dental work). Fortunately this was more of a problem years ago, although infection through surgical procedures or blood transfusion does continue to occur occasionally even today because people are human (again, as verified by the numerous links to articles on our "Hep C Info" page).

No agency has a license to deceive the public in an effort to protect their own and it's time for those who do to come clean with the public about hepatitis C (no pun intended). Let's make something perfectly clear here: the purpose for this dialogue is not to simply bash the CDC or any other health agency but rather to reveal the guilty. My intention is to address the multitudes of misinformation being spread about hepatitis C that has so many patients and family members baffled, as well as to expose those who are responsible for it. The CDC aren't the only ones misleading people about this disease, but as it turns out, they are largely responsible for much of the stigma hepatitis C patients currently live with. This is SO wrong. It's not only a terrible disservice to us all, but just all the more reason why we need to use our own common sense when reading some of the information being put out there about this disease. Money is a big incentive to mislead people and it's important that we learn to separate the facts from all of the fiction!

Enough talk about bad information and questionable health agencies. It's upsetting to even discuss . . . . . .

Ours is normally a slowly progressive disease which allows us the luxury to research our treatment options in depth without the need to make hasty decisions we may later regret. We CAN control this disease and we have the option of using either conventional therapies or alternative methods of healing to do so. The more we're able to learn about hepatitis C on our own, the more we'll be able to work together with our doctors and better our chances of keeping it under control. It's not wise to blindly take anyone's word for anything related to disease. So, research for your life!!!

NEVER let anyone rush you or scare you into taking ANY treatment until you're absolutely sure it's right for you. These types of decisions should never be taken lightly, and remember to listen to your heart. It's YOUR body, so choose your path to healing carefully and always take the road that's best for YOU! Then feel free to give us a call if you need help.

The National Hepatitis C Coalition, Inc. tries to take advantage of every opportunity to get out into the public to spread awareness about hepatitis C through health fairs, speaking engagements, and other community events. We find that the general public as a whole knows very little about the disease and most don't realize why they should be tested for it. The Journal of the American Medical Association indicates that in 2005, two-thirds of all Americans believed to be currently infected with hepatitis C have never been tested for it and do not know they are infected with the disease! This is largely because too many folks don't believe they've ever been at risk for infection so they don't get tested. Not to mention that hepatitis C testing is not routine, so some people mistakenly assume they've already been checked for the disease. This is unfortunate, but too often wrong, and the very reason why this organization uses every opportunity to get out "into the trenches" ourselves and educate the public about the truth related to hepatitis C. If we don't, who will?

We have a big fight ahead of us folks and many of those we thought were "our own" have shown that they're only concerned about their own interests and how they can shed themselves of this awful stigma. I hate the disease too and would love to be cured as much as anyone. I also know that every one else who has the virus feels the same way, but most of us have more dignity than to publicly mislead people and hurt our own in the process. Harming other sick people by making false claims about one's own disease is not only cruel and self serving but it's downright despicable. SHAME ON NAOMI JUDD AND STEVEN TYLER!!! It's great that they "came out" about having the disease, but misleading the public about their conditions is inexcusable. If they can't be honest or learn the truth, they should remain silent. PERIOD!

Here's a fact that not everyone knows about: Naomi Judd's irresponsible claims of being cured back in the late 1990's are single-handedly responsible for much of why the hepatitis C community still receives mere miniscule research funding for our disease from our government. Ms. Judd intentionally stroked her own ego by going to a congressional hearing on hep C in Washington, D.C. where she told our congressional representatives that she was cured. She intentionally lead them to believe that we already have cures available for hep C by saying what she did and was apparently completely oblivious to the seriously dire consequences of her actions. This was again repeated by another group that went to Washington in 2005. So, for the most part our U.S. Congress now believes we have cures for hepatitis C and they do NOT see any urgency to make badly needed increases in hepatitis C research funding anytime soon. Remember this the next time you're tempted to get upset at why there's not more research going on for hepatitis C and why we rarely hear about it through the media. And now we've got a so-called "rock star" who I never would have believed could be so thoughtless as to hurt people like he has just by making his misleading "cure" claims, but he has.

Next time you want to take do something for the cause and get some frustrations out at the same time, try writing to Ms. Judd or Mr. Tyler and tell them to get educated about this disease and STOP hurting YOUR chances for ever being truly cured. People like this need to either learn the truth and TELL PEOPLE TO GET TESTED or do us all a favor and keep quiet. Remember the old saying about how it's far better to remain silent and be seen as ignorant rather than opening your mouth and removing all doubt?

Anyway, the important thing to remember is that whether through using the commonly prescribed chemotherapy treatments like the pegylated interferon combination therapy, or the use of alternative methods of healing like herbs and supplements, HEPATITIS C CAN BE CONTROLLED and probably won't become life-threatening for the majority of those who have it and take care of themselves. Do your OWN research and never forget:

We CAN do this . . . .

YOU ARE NOT ALONE!!

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