AND HEPATITIS C
(Charlie Seller was an inmate in the NYS corrections system
from 1997January 2001.)
In mid September, 1998 I became ill: fatigued and
weak, I thought I'd caught a bug. By late January, 1999
I'd been diagnosed as suffering from chronic hepatitis C
and was taken out of the prison to see a
gastroenterologist at a local hospital. I was examined,
asked a few questions, told that I would be having a
liver biopsy performed in the near future and sent on my
way. A coagulation panel (blood coagulation) was also
ordered, the biopsy being dependent upon its results.
That's when the trouble began.
Actually, the trouble
began with the very first blood test back in September:
the one which indicated that not only did I have Hepatitis C Virus,
but that I'd been exposed to HBV, too. Said
"trouble" beginning with the fact that no one
from Facility Health Services (FCS, the prison's health
care service) even told me I was infected. (This
scenario would repeat itself a year later when an
abdominal sonogram found an 18mm. hyperechoic solid in
the right lobe of my liver. I found out only after
ordering my medical records at a cost of 25˘ per page.)
In April of 1999 I was transferred to Attica where I
immediately began to ask questions about the liver
biopsy the specialist had ordered. The doctor I saw told
me, "You don't need one."
By that time, I'd
begun writing away for every free piece of Hepatitis C Virus
information I could get my hands on. I wrote a Grievance
against this doctor, and, while spelled with a capital
"G" any impression of power is entirely
illusory. A direct result of the 1971 Attica prison
riot, Grievance is without question one of the biggest
slaps in the face that New York State has ever given her
inmates. I wrote my Grievance and offered several pieces
of evidence in support of my argument beginning with the
gastroenterologist's diagnosis and his orders for a
coagulation panel and a liver biopsy. I offered excerpts
from the NIH Hepatitis C Consensus Statement of 19971
including a paper on "The Role of Liver
by Robert P. Perrillo, M.D., the NIH's own Consensus
Panel biopsy expert.
No arguments there,
right? Wrong. At first, on both facility levels (the
first being that of Grievance and the second that of the
Superintendent of Attica), and then in a final response
from Albany, the Grievance was denied and in each denial
I was informed that my case was being followed as per
established medical protocol. In several responses the
medical staff were referred to as "professional
experts." I asked where I might obtain a copy of
this "protocol" and was in turn ignored for 4
months until I sent a Freedom Of Infor mation Law (FOIL)
re-quest to the Chief Medical Officer of the New York
State Department of Corrections (NYSDOCS). His designee
informed me that I could get a copy right here in
Attica, and two weeks later I received said copy
accompanied by an unsigned note apologizing for the
The Hepatitis C
Primary Care Practice Guideline,
published March 31, 1999, had, unbeknownst to me, been
replaced by a new edition in January, 2000. (The only
difference is the date of publication.) The first
Guideline is a five page document allegedly based on
three references: the same NIH Consensus Statement of
1997 from which I drew much of my evidence, a CDC tract
from an October, 1998 Morbidity and Mortality Weekly
(such a cheery title, no?) and a Federal Bureau of
Prisons Treatment Guideline of 1997.
Please note that the NIH Consensus Statement is, though
not a Federal Government Policy Statement, the Grandaddy
of them all as each of them lists the NIH document as a
After reading the
Guideline closely, I quickly realized that the only two
mentions of liver biopsy
within its pages were made solely in reference to
interferon (IFN)/Ribavirin therapy. This
"information" was taken directly from the NIH
info and then employed in a most singular context--that
of IFN therapy. There was absolutely no regard for
several NIH paragraphs in the same text regarding the
value of liver biopsy in judging the organ's
histological health, and in grading the severity of
damage it has suffered.
The director of
Grievance, in Albany, wrote to inform me that the
Facility Health Services Director (FHSD) had final say
over all medical decisions. I
wrote back to ask if
that wasn't collusion? How can Grievance ask the doctor
I am "grieving" his own opinion of the
treatment he is giving me? I never got an answer to that
one, but Albany ordered that the coagulation panel be
taken and that the "need" for a biopsy would
be determined based upon those results.
This is wrong. It is
impossible to determine the "need" for a
biopsy based upon the panel results because they only
tell the physician whether or not you can survive the
biopsy. (The panel is a test that measures the rate at
which your blood clots.) Nonetheless, and after many
screw-ups on the part of FHS, I gave blood for the panel
in October, 1999--seven months from the time it was
originally ordered. I was never notified of the results,
nor called back to see the doctor. I wrote to Grievance
here in Attica and was most tersely informed that I had
in fact been given the results of the panel on August
31, 1999. When I wrote back to correct the Grievance
Supervisor, I received an arrogant response which stated
that, "Dr. orders are not orders but merely
suggestions...the FHSD has final say over all medical
procedures and has determined that you do not need a
liver biopsy at this time."
Quite frankly, I
probably didn't need a liver biopsy. Although the jury
is still out, many doctors cannot agree as to the
usefulness of the procedure in particular instances,
but, due to the number of "mistakes" by FHS
and Grievance, I continued to push because they seemed
so incapable of delivering an informed--or even close to
accurate--opinion on their own incompetent behavior. I
have come to believe that NYSDOCS/FHS run their show a
lot like General Motors ran theirs in the '60s: they
wouldn't spend $2.50 per car because the cost of law
suits that would result from exploding cars was deemed
cheaper. (After their liability was proven, one poor
widow won $50 million from them!) NYSDOCS/ FHS is doing
exactly the same
thing. There is absolutely no doubt in my mind that when
a half-dozen Hepatitis C Virus+ inmates all tell me that they were
sent to the Mental Health Unit by the physician for
"evaluation" there is surely something wrong.
I thought I'd caught
them here, but it didn't matter. Smoking gun, the whole
nine yards, it just didn't matter. I wrote to everyone
but the Pope, and I'd be lying if I said I didn't think
of writing to him, too. No help. A few sympathetic ears,
but no solid results. I have come to believe that FHS is
the biggest open conspiracy I have ever seen. I grew
scared. (Not to brag, but I don't scare too easily.) I
dug a little deeper and found out that IFN costs almost
$10,000 a year. Turned out the Guideline was so full of
errors that I began taking notes to write a paper on
them called Reference Deviations Within The
to be the protocol:
they don't ask, and they don't tell. There is virtually
Hepatitis C Virus education taking place here in Attica. None!
In an editorial
printed within the pages of Hepp News/ HIV Education
Prison Project, published by the Brown University
School of Medicine, Louis Tripoli, M.D., Vice President
of Medical Affairs for Correctional Medical Services in
St. Louis, Missouri and an Adjunct Assistant Professor
of Medicine at Johns Hopkins University (who boasts that
his organization is responsible for the health care of
about 300,000 incarcerated individuals in United States)
"begged" his colleagues to pursue a
"rational approach to hepatitis C infection ...
Much of what we believe about hepatitis comes from
content-area specialists, such as hepatologists, few of
whom have had any appreciable experience treating a
correctional population. No long term studies are
available to tell us whether those who are selected for
treatment in correctional settings will benefit from
treatment and maintain behaviors that will reduce the
chance of future reinfection."
Is Dr. Tripoli saying
what I think he's saying? That inmates are mysteriously
half-dozen Hepatitis C Virus+ inmates all
tell me that they were sent to the
Mental Health Unit (MHU) by the physician for
"evaluation," there is surely something wrong.
different from other hepatitis C infected human beings
by virtue of their criminal background alone, and,
denying them treatment is perfectly okay because who can
tell if they will change their "habits"? This
"professional" goes on
to suggest that we " ... are being led down a
NYSDOCS/ Division of
Health Services' Hepatitis C Primary Care
Guideline." You see, the Guideline blatantly
discriminates against everyone who is subject to it.
Everyone. Helpful "recommendations" under the
heading "Considerations For Treatment" like
"Successful Completion of ASAT(Alcohol and
Substance Abuse Treatment)" place every candidate
for IFN / Ribavirin therapy in the category of
drug/alcohol abuser. I can think of no other medical
therapy that requires one to undergo substance abuse
treatment with or without evidence of a substance abuse
problem. A certain NYSDOCS nurse administrator informed
me that this was entirely within bounds because, as she
so delicately put it, "We can't be expected to keep
treating people who go back and do the same things
I dug a little deeper.
There are only two available Hepatitis C Virus tracts published by
NYSDOCS--a May, 1999 article in DOCS Today,
a NYSDOCS organ whose articles conveniently contain no
by-lines (none of
and with good cause if the article on Hepatitis C Virus is any
indicator of their fact checking skills) and the
Guideline--the DOCS Today article stated that NYSDOCS/FHS
would be conducting Hepatitis C Virus screening at several reception
facilities. On June 2, 2000 I was informed by NYSDOCS
that the "total" number of Hepatitis C Virus positive test
results was 4,441.
By itself, that is barely 5% of the entire NYSDOCS
inmate population. No time frame (nor context) was ever
offered with these "statistics." And, even in
a most favorable light of, say, two years worth of
testing, it is still an incredibly low number when
compared to that of California (32%), Texas (28.6%) and
even Maryland, which at 38% has a higher Hepatitis C Virus infection
rate among her prisoners than New York.8 I
dug even deeper. The Guideline says that testing would
be offered to those inmates with a history of high risk
behaviors. It is not. In fact, a "Don't Ask, Don't
Tell" policy seems
path by the
This echoes the DOCS Today article too closely
for comfort. DOCS Today even went so far as to state
that Hepatitis C Virus awareness in NYSDOCS prisons is due solely to
the efforts of pharmaceutical companies trying to sell
more drugs. And, while that may or may not be true, as a
"fact" it does not lend itself to any medical
debate regarding infection rates, who should or should
not receive treatment and a host of other incredibly
suspicious arguments I am sure Dr. Tripoli and his
like/budget-minded contemporaries have at the ready.
All this is just as
outrageous, if not more, as a doctor or nurse having to
call an HMO or an insurance company before they will
give you treatment. It begs a rather tedious question as
to who is worth what, and to whom. It should have never
happened in the first
place and has set a precedent that points in
Without support from the outside,
Hepatitis C Virus will thrive in prisons as Hepatitis C Virus+
and at-risk individuals are arrested and
incarcerated in ever increasing numbers.
directions most people
would rather ignore or refuse to acknowledge. This, of
course, does not change the fact that we are most
assuredly heading towards them. In fact, in many
instances we are already there.
It has been determined
that as many as 4 million Americans (1.8%) are infected
with Hepatitis C Virus. Between 8,000 and 10,000 of these people will
die every year from Hepatitis C Virus-related chronic liver disease.
Hepatitis C Virus is now the third leading cause for liver transplant.
Intravenous drug use is the primary source of all new
Hepatitis C Virus infections: sixty percent. As much as 30% of the
national total of Hepatitis C Virus cases pass through correctional
facilities each year. Eighty percent of all U.S. inmates
have used illicit drugs, 1 in 4 parenterally.
In a recent reader survey conducted by Hepatitis
magazine, prisoners' issues were listed third from last.
demonizing prisoners allow men like Dr. Tripoli to
suggest that inmates aren't the same as other patients.
His editorial went so far as to state that "we may
end up expending valuable resources providing medication
to a large number of people who may derive no
substantial benefit in order to prevent complications in
a minority. "I blink, I do a double take--who is this man? As
prisoners become the latest "Two Minutes Hate"
ambiguous laws are written and
are bought and sold and we forget that we are a
democracy, whenever money comes into the picture, that
is. Our perceptions of change are being manipulated--not
that they were so very keen to begin with--because by
either diversion and/or lameness, many will not believe
that "it" can ever happen. And when
"it" does happen to someone else, that is
acceptable because "it" is not happening to
If history has taught
us anything, it is that it repeats itself. Without
support from the outside, Hepatitis C Virus will thrive in prisons as
Hepatitis C Virus+ and at-risk individuals are arrested and
incarcerated in ever increasing numbers. And when they
are inevitably released, less than aware (as long as
current policies continue), Hepatitis C Virus will be there with them,
returning in greater strength. Literal Hepatitis C Virus factories,
that's what prisons are becoming. These are the trends
and directions we are all heading in. For in the words
of the great Russian novelist, Fyodor Dostoyevsky:
"The degree of civilization in a society can be
judged by entering its prisons."
Seller is an aspiring author and harm reductionist. He
was recently released from Attica Correctional Facility.
1 "Management Of Hepatitis C."
National Institutes of Health Consensus Development
Statement. March 24-26, 1997.
2 Perrillo R. "Role of Liver
Biopsy" (presentation). National Institutes of
Health Conference on Hepatitis C. March 24-26, 1997.
3 Hepatitis C Primary Care Practice
Guideline. New York Department of Correctional
Services, Division of Health Services. March 31, 1999.
4 "Recommendations for Prevention
and Control of Hepatitis C Virus (Hepatitis C Virus) Infection and Hepatitis C Virus-Related
Chronic Disease." CDC. MMWR. October 16,
5 Federal Bureau of Prisons Treatment
Guidelines for Viral Hepatitis. September 1, 1997.
6 "What Hepatitis C is - and
differences from A or B." DOCS Today.
NYSDOCS. May 1999
7 Shepard, M.E. FOIL response. Divison
of Support Services, NYSDOCS. June 2, 2000.
8 Spaulding, A. Hepp News/HIV
Education Prison Project. Brown University School of
Medicine. Vol. 2, Issue 7. July 1999.
9 Tripoli L. Editorial: "A Rational
Approach to Hepatitis C Infection." Hepp
News/HIV Education Prison Project. Brown University
School of Medicine. Vol.2, Issue 7. July 1999.
11 Alter M. "Epidemiology of
Hepatitis C." Hepatitis Alert. Hepatitis
Foundation International. Summer 1997.
12 Schreiner T. Editor's Letter. Hepatitis.
Vol.2, No.2. March/April 2000.