While A True Cure May
Remain Elusive, There Is STILL Hope For
Controlling Hepatitis C!!!
(But first we have to know what to
By Kev Krueger
Cofounder, National Hepatitis C Coalition, Inc.
Anyone who has never been tested for hepatitis C
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 through 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. Hepatitis C does not automatically
mean a death sentence, and in the majority of cases where diagnosis is made
early enough, the disease is no more than a mere nuisance.
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 (and many others as well) have made such claims, but there still is
no test that is able to accurately measure absolute zero virus in the body
(current testing measures our blood, NOT what may be hiding in internal organs).
Without reliable testing to confirm that the virus is completely gone from the
entire body, there's no way to know whether it's truly eradicated
or just hiding somewhere where it can't be detected, possibly to resurface at a
later time. We've known far too many folks over the years who were told by their
doctors that they were cured, only to learn years later that the virus was once
again detectable. People feel crushed when this happens because most of us would
like NOT to have to admit we've ever had this doggone disease in the first
place! The word "remission" is really much more accurate in these situations
anyway, and the word doesn't hurt our funding. Most people don't realize it, but
our Congress doesn't believe we need anywhere near adequate funding for this
disease because they think we already have a cure and don't need it - thanks to
well-intentioned individuals who've gone to Washington, D.C. and led our leaders
to believe accordingly.
The strongest scientific evidence available indicates that
hepatitis C is NOT a completely curable disease and those who claim to be
"cured" of hepatitis C are merely practicing what might best be described as
"hopeful thinking". These folks may very
well be experiencing what is sometimes known as a "clinical cure", which
indicates that the disease isn't presently detectable by current testing methods but
there are no guarantees the virus is completely gone or that it might not
resurface at a later time.
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, but in order to know if a person has it, they
MUST GET TESTED!!!
All of this
confusion over whether hep C is curable or not is
really more of an indictment as to how limited ALL
testing related to the disease is rather than being
proof of anything definite about the disease infection
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 though
a person's viral load may be undetectable. These
limitations are 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 the disease 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"
talk is speculative. Something else I find interesting
is the fact that not ONE doctor that I've been to
since my diagnosis in 1994 believes there is a true
cure for the disease, and I've been to many liver
specialists since that time!
Unfortunately though, 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 until a later time. 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!
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 these days, and have blatantly violated that trust with their
own patients. Dishonest and unethical doctors make the good ones look bad and
it's too bad we can't weed them out. 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 to you. It's YOUR
body, and only you will suffer the consequences of blindly following bad medical advice.
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 on.
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
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 countless
so-called "studies" used in attempt to persuade the public that
hepatitis C infection is primarily the fault of those who have it and I'm STILL
not buying it.
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 the past and yes even presently,
EVERYONE SHOULD BE TESTED FOR HEPATITIS C!
Many of our nation's
health agencies have become very adept at making claims they cannot support with solid
data, and their mere speculations are becoming more and more accepted as truth. Does this sound like
real science? Of course not. Unfortunately though, most of the media runs to the CDC
(Centers For Disease Control) to confirm
information about diseases and all too often they'll assume all is true even
when it isn't. Keep this in mind the next time you wonder why we
hear so little honest information about hepatitis C in the media.
intending to point fingers here: it's no secret that
prior to 1989, medical tools were not being routinely sterilized to kill viruses
like hepatitis C, and since there was no test for the disease at the time, our
blood supply was never screened for it either. Therefore, the use of infected
tools and donated blood prior to the 1990's has most certainly infected
countless individuals over the years, even while our government continues to
bend over backwards attempting to convince the general public that ours is a
"drug users disease".
Part of the problem is
the fact that 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.
These are reasons why it
is 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 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 (meaning
immunodeficiency disease")? They led us to
believe back then that it was a disease only suffered by those in the gay
community and they were later proved wrong.
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
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, can you imagine what all
the shaking of hands that we've done over the years must have caused? And 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 what the CDC says 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 because this kind of
information is ridiculous!!! 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 by any doctor nor do I expect
to (some dentists use face shields to protect against being accidentally sprayed
in the face, but it's done with all patients, not just those of us with hep C. 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 type of 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.
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
heterosexual 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 it's just not appropriate to call the disease "sexually
transmitted" when it isn't (except where there's blood). 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 their 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 truth. 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
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, too often wrong, and the very reason why
we use 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?
Anyway, the important thing to remember is that
whether a patient decides to use 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 are
diagnosed early and take care of themselves afterwards.
Please. . . GET TESTED.
A simple blood test may just save your life!
DO YOUR OWN RESEARCH AND
YOU ARE NOT ALONE!!
June 4, 2009 -
To those I cannot keep in touch with as often as I
might like, who inquire periodically as to my own personal well-being:
I greatly appreciate your concern and
I'm thankful to be able to say that by the Grace of God I continue to remain alive on this earth with my own liver intact and I'm basically holding my own.
When used correctly:
"GOD'S MEDICINE" WORKS!
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This Page Was Last Updated
June 22, 2012