Treatment Denied INMATES AND HEPATITIS C
BY CHARLIE SELLER

TREATMENT DENIED INMATES 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 1997 including a paper on "The Role of Liver Biopsy" 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

medical health 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 delay.

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 Report⁴ (such a cheery title, no?) and a Federal Bureau of Prisons Treatment Guideline of 1997.⁵ 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 reference.

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 no
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

When a 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.

biologically 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 primrose

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 again!"

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

them, 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 pharmaceutical com-panies," 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.

Recent trends 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

passed, politicians 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 us.

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."  

Charlie Seller is an aspiring author and harm reductionist. He was recently released from Attica Correctional Facility.

References
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, 1998. Vol.47/No.RR-19.
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.
10 Ibid.
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.
13 Tripoli.