By Nicholas Regush
First, some reassuring and potentially empowering information about a
disease named hepatitis C. Of all the studies Ive examined in the past several
weeks, one older one looms large as the first to offer patients a measure of hope and food
Its a large-scale, long-term study published back in 1992 in
the New England Journal of Medicine (Volume 327, No.27, pages 1906-1911) , and
while it should not be seen as definitive, it is most instructive as a way of thinking
about the disease.
The study, which followed transfusion-related non-A non-B
hepatitis patients for 18 years and matched them with control subjects who received
transfusions but didnt have the disease, informs us that it appears to be uncommon
for the disease to result in dire problems. The study concluded that those believed to
have been infected with the hepatitis C virus (associated with most cases of non-A non-B)
live as long overall as those with no infection.
There was, however, a small increase over time in the number of deaths specifically
associated with liver disease in patients with non-A non-B, suggesting that it takes a
very long time indeed for the disease to take its final toll.
What can we make of such data? The optimist might conclude that
the virus wont reduce overall survival rates over time, and that increased numbers
of liver-disease-related deaths that the study documented in infected patients might
actually be due to intervening factors, including alcohol consumption. But as an editorial
in the same issue of the Journal cautioned, a much longer-term follow-up of
patients may well show a tide of death related to the virus. And the editorial also called
for more research on the effects of the disease, and not just on how long people live.
What this study immediately tells me is that evidence for a viral
cause of non-A non-B is open to question. It raises a big red flag because of the time it
appears to take this virus to do its dirty work. Other data suggest that it doesnt
even cause symptoms beyond a conventional flu-like illness in many people, even for
decades. When science lines up behind a virus whose damage potential extends into many
decades, I get suspicious.
Is Evidence Lacking?
So I did some checking. Those of you who read my last two columns know that I have come
away from the voluminous data on the hepatitis C virus convinced that science has made a
huge mistake. There is no good evidence that such a virus exists. I concluded that the
scientists who made the initial discovery made fanciful leaps; consequently these leaps
became the basis for further studies and entrenched beliefs. My view is that the cause of
non-A non-B hepatitis remains unknown.
Some 4 million Americans are said to be already infected with the
hepatitis C virus. If I knew that I were among them, I would make it a major commitment to
uncover everything I possibly could about this virus and the claims underlying its
I would stop at nothing to get a good fix on the virus because
that knowledge would certainly affect how I live my life, how I would assess my chances of
becoming ill and which treatments I might deem appropriate.
Strength in Numbers
I would try to associate with others affected by the disease who also had a burning desire
to raise questions about the virus. I would make an effort to acquaint myself with the
fundamental science and I would be particularly interested in following up any challenges
to that science. I would consider it foolhardy to automatically accept the conventional
wisdom. What is considered mainstream today in science might well be built on the basis of
medical politics and corrupted research.
I would take special care not to associate with organizations or
support groups that would insist on following the CW and which would be immediately
antagonistic to non-conventional thinking about the disease. And I would be particularly
cautious about joining up with any patient group that was supported by pharmaceutical
funds or led by lay people and doctors alike who appeared to be toeing some official line,
or, for that matter, using the vehicle of a support group or voluntary association to
enlarge their egos.
I would much rather seek the support of independent spirits who
gave me the empowered feeling that I was free to pursue any and all information about the
I am writing this because of the nature of many of the letters that I have been flooded
with in response to my first two columns on this issue. Most have come from patients or
patient support groups that lambasted me for questioning the mainstream view on non-A
non-B hepatitis. Rather than raise questions or indicate that they were interested in
knowing more about my views, they settled for name-calling and, in some cases, threats to
Well, I dont care much if people call me names and I can
either live with threats or refer them to police authorities if they get out of hand. What
I find very disturbing is the fact that so many people would be unwilling to further
explore the nature of their disease.
Rather than pummel me, these patients and support groups should
delve into the questions being raised about non-A non-B, not only by me but by others,
including some prominent scientists. One would think that taking this route might become
an empowering experience.
In any case, to those patients and support group members who did
write that they would look into the issues that I raised, I can only applaud your
willingness to have an open mind. This is what it will take to get to the bottom of what
this disease is all about.
And please stay tuned. In the weeks and months ahead, Ill
occasionally update you on my own burning desire to make scientists working on non-A non-B
accountable for their claims.
Ill also let you know if anyone involved in the discovery
of the so-called hepatitis C virus has the guts to take up my challenge to publicly debate
me on the scientific issues.