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Prisons Nationwide Fail to Treat HCV Epidemic
by John E. Dannenberg
The JeopardyTM answer is: "The national average treatment rate for HCV-infected prisoners." The winning question is: "What is approximately 1%?"
With HCV [Hepatitis-C] infection rates in state prisons nationwide estimated at between 16 and 41%, state prisoners account for almost one-third of the 4.5 million total people in the United States infected with this often fatal disease. But because the annual treatment cost per prisoner runs $25-$35,000, and states are loathe to pump money into prison health care, HCV is transformed from a dirty little secret inside the walls into a national epidemic, as 1.3 million contagious and untreated prisoners are unceremoniously dumped back into the communities each year. Worse yet, because HCV testing is not mandatory, many carry the virus outside unknowingly only to infect others from blood contamination during injuries, body piercing, tattooing, sharing needles and unprotected sex.
HCV, a blood borne virus that often runs its fatal course in 10-20 years, can infect a person without showing outward symptoms for much of this period. It is frequently only detected during routine blood tests when liver enzymes appear abnormal. Yet throughout the entire time of infection, one can pass the disease to others. Such blood borne transmission can come even from seemingly innocuous contact such as sharing toothbrushes or nail clippers. With intravenous drug use (a common habit of prisoners), transmission rates are very high. Because HCV was virtually unknown 20 years ago, even a long-abandoned drug habit may now haunt former users today. Compounding the problem is that repeat criminal offenders and long-term prisoners suffer a concomitant socioeconomic trait minimal health care. As a result, today many prisoners are "suddenly" showing up with advanced cases of Hepatitis-C for which they need immediate and expensive treatment. If cirrhosis [scarring] of the liver has occurred, they may even need liver transplants.
HCV has six different genotypes and 90 known subtypes; some are much more amenable to currently available treatment than others. Suppression of all measurable viral loads is often accomplished with the current one-year pegylated interferon-ribavirin treatment. Although cirrhosis is not reversible, its progress can be stopped. When the virus is no longer detectable, transmission potential to others is minimized.
Because such a large percentage of HCV victims experience incarceration, the opportunity to interdict the nationwide epidemic presents itself uniquely in the nation's prisons and jails. But because any treatment for prisoners is socially and politically unpopular, the expensive HCV treatment regimen is all but flatly rejected leaving the epidemic to only worsen. The record of several states in this regard is now emerging.
Montana: 0.0% Treatment Rate
Montana corrections officials acknowledged a 30% HCV infection rate, but declined to treat it. On February 25, 2003, a divided Montana Supreme Court rejected a prisoner's suit for treatment of his advanced disease by declaring that no treatment exists. [PLN, Feb, 2004] This obviously erroneous conclusion has since been recognized, and late reports are that a few seriously ill prisoners are being treated. However, HCV is more successfully treated before real liver damage is done, so the Big Sky state's efforts are but a pie-in-the-sky concession to the real problem of stemming the spread of HCV infection to its citizenry.
Oregon: 0.2% Treatment Rate
Oregon is the home base of one of the most progressive and technically up-to-date news sources for prisoners with HCV. Hepatitis-C Awareness News is a bi-monthly doctor-edited ten page newsletter dedicated to defeating this epidemic disease through education. Founded by HCV patient Phyllis Beck (who also directs the Eugene-based National Hepatitis-C Prison Coalition) and now supported by a $35,000 grant from the Robert Wood Johnson Foundation, Awareness News reaches out nationwide to help prisoners gain treatment.
And well it should be based in Oregon, where as of May, 2003, Oregon attorney Michelle Burrows knew only of eight Oregon state prisoners being treated as she sued on behalf of ten others in dire need. (Burrows lost four more clients due to HCV-related deaths.) Hoping to get the case certified as a class-action, Burrows aims to bring treatment to Oregon's estimated 3,300 infected prisoners. (Anstett, v. State of Oregon, U.S.D.C. D. OR, Case No. CV 01-1619 BR.) Already, Hepatitis-C is the fourth leading cause of death in Oregon's prisons.
Fifty-two year-old Beck, a former nurse, doesn't limit her energy to paper efforts. Every other month with a growing support group in tow she visits HCV-infected prisoners inside Oregon's prisons where they answer questions and offer advice. With her courage and dedication, normally progressive Oregon may pick itself up off the bottom of the ratings list and humanely treat its infected prisoners.
Michigan: 0.3% Treatment Rate
Marva Johnson was thrilled to be reunited with her longtime boyfriend, Randy Vallad, upon his parole in 1999. When he once cut his head, she tended his wounds. Only upon a 2001 parole violation did Randy accidentally view his Michigan Department of Corrections (MDOC) medical records and discover his pre-1999 positive test there for HCV. "They knew and didn't tell him. As a result, they let him infect me," said 33 year old Marva, who took a year's course of the often painful treatment for her newly-acquired Hepatitis-C. Represented by attorney Steven Crowley, Johnson and Vallad are now suing MDOC.
MDOC's 48,000 prisoners include an estimated 18,000 who carry HCV. It would cost an estimated $200 million to test and treat them, according to MDOC spokesman Russ Marlin. Operating instead on a shoestring, as of September, 2003, MDOC was only treating 55. Although MDOC has no funds for prisoner HCV testing, the Michigan Department of Community Health is planning to step in with testing of 800-1,000 prisoners per month, at a cost of $30,000.
The Michigan guards' union claimed that several MDOC guards became infected from prisoners. As a result, in their 2002-04 contract, they fought for and won testing and treatment for all guards exposed to prisoners' blood. Yet it seems ironic indeed to knowingly not treat 18,000 suspected infected prisoners, and thus willfully expose 9,000 guards to the disease. Apparently, MDOC's tradeoff for saving prisoner healthcare costs is to make guards expendable.
Prison healthcare workers would also seem to be at risk. But the U.S. Center for Disease Control (CDC) reports the incidence of HCV infection among correctional healthcare workers at two percent, the same as in the general public.
Ohio: 0.6% Treatment Rate
Ohio's Department of Corrections (ODOC) reports it has identified 2,597 prisoners about 6% of its population as being infected with HCV. Federal estimates by CDC suspect the real number is 20%, or about 9,000 cases. Whichever number is correct, as of July, 2003, ODOC has seen fit to treat only 16 of them in three prisons. ODOC Director Reginald A. Wilkinson countered "We're doing more than we used to do. We have to draw the line somewhere." That line, for HCV testing and treatment, is currently $3.9 million about 3% of MDOC's annual medical budget of $118.4 million. Wilkinson added that treatment is normally denied if the prisoner's release date is within 18-24 months. "We cannot afford to give the same treatment Magic Johnson gets for his HIV," he stated, in an apparent attempt to defuse the Hepatitis-C epidemic issue with compassion for a public icon's AIDS saga.
HCV infection is documented at all 34 ODOC prisons. Pickaway Correctional Institution topped the list with 319 cases; Correctional Reception Center had 262; Lorain Correctional had 122; and Richland Correctional had 121 but none of these known cases were being treated. Treatment was reported only at Youngstown, Caldwell and Lucasville prisons.
Ohio state Senator Robert F. Hagen said he was "totally dissatisfied" with the non-treatment of prisoners because it will spread to their families when they parole. Dr. Kenneth G. Cowens, a Youngstown community physician, called Hepatitis-C "the next plague." Of 100 people he treats with the disease, 25 are former prisoners. "At some point," he observed, "this stops being a prison problem and becomes a public-health problem."
Nebraska: 1.6% Treatment Rate
Last year the Nebraska Department of Corrections (NDOC) spent $280,000 treating eight prisoners with HCV (1.6% of its 500 infected population), but the total is projected to increase to $700,000 to treat twenty, based upon their $35,000 annual projected cost. To its credit, the Nebraska legislature mandated in 2001 that the prison system provide the same level of care that most insured Nebraskans get. State Senator Dwite Pederson of Elkhorn stated "Just because they're inmates doesn't mean they shouldn't have good medical care. ... That's required by federal law and the constitution." This resulted in the doubling of healthcare expenditures to $4,375 per prisoner last year.
A PLN subscriber in Lincoln reported being the first prisoner to get treatment in Nebraska, beginning with a liver biopsy in 2001. He reports that his full course of treatment was completed in February, 2003, following a September, 2002 interim test of his viral load as undetectable. However, after treatment ended, it was discovered that his genotype 1-A disease had mutated so as to become drug-resistant, and his new viral count was back over 500,000.
He further reports on the nature of NDOC's treatment eligibility determination. If a prisoner has a dirty urinalysis test, they will be denied treatment. Absent that, odds of getting treatment increase if the prisoner has a "Goldilocks liver" one that is "just right" by virtue of showing enough damage to warrant treatment, but not so much damage as to presume a low probability of success.
Massachusetts: 1.7% Treatment Rate
Dr. Alfred DeMaria, of the Massachusetts Department of Public Health, reported that 30% of the state prison male population and 40% of the female population are HCV positive, while 3% of all prisoners are HIV positive. Viewed from another perspective, 70% of those 300 with HIV are also co-infected with HCV, while 10% of those carrying HCV are co-infected with HIV. At least five prisoners died in 2002 from Hepatitis-C in Massachusetts prisons and jails. He noted that HCV is far more contagious than HIV, because HCV requires only a small exposure to contaminated blood. And since HCV treatment is so costly, only 50-60 of the 3,000 infected state prisoners can be treated at any one time, Dr. DeMaria stated. Cure rates for HCV alone are running at about 50%. But according to Susan Martin, director of health services for the Massachusetts Department of Corrections, the otherwise-declining death rate of HIV patients has increased due to complications from co-infection with HCV.
Pennsylvania: 6.8% Treatment Rate
The good news is that in the past year, Pennsylvania treated 550 of its 8,030 known HCV infected prisoners (23% of the prison population) with a 48 week course of treatment. The bad news, announced by Pennsylvania Department of Corrections (PDOC) spokesperson Susan McNaughton, is that beginning in September, 2003, stricter rules for treatment eligibility will be imposed, which are estimated to cut the number of patients newly admitted to treatment to about 100 an 81% reduction.
"We were facing medical cutbacks. We were faced with having to live with a limited budget. We felt we needed to prioritize our budget," said Fred Maue, chief of health services for PDOC. He stated that treatment would be focused on the most highly curable HCV genotype. By thus targeting patients, it was felt the state could get "more bang for its buck," said Thomas Shaw-Stiffel, a specialist at Pittsburgh's Center for Liver Diseases. "It's to the patient's benefit to be more focused," Shaw-Stiffel went on to say, based on his earlier University of Rochester experience treating New York HCV prisoners. "On the surface, [the reduction] may look ominous, but it is beneficial," he opined.
However, in contrast with Nebraska's shouldering of its responsibility to care for prisoners, Shaw-Stiffel did not cite to any constitutional authority for thus knowingly depriving potentially terminally-ill patients solely because they are prisoners. Attorney Angus Love, director of the Pennsylvania Institutional Law Project described the cutbacks as "disappointing" and "not surprising," due to budget constraints. Nonetheless, it was noted that Pennsylvania was way ahead of neighboring New Jersey, which only treated 33 HCV prisoners last year.
Maue reported his department was over-budget at $8.8 million last year, and estimated that for this year, "top dollar would be $6 million" with costs scheduled to decline the following year. To explain the reduction, he noted that the treatment-preclusion washout period of at least one year remaining on one's sentence was being boosted arbitrarily to 18 months. Any way you look at it, it appears that Pennsylvania is seriously regressing as to stemming the HCV epidemic.
California: A Mixed Bag
California's 34 prisons do not have a common HCV treatment protocol. While a very specific one exists at supermax Pelican Bay State Prison (PBSP) in response to a court order in Madrid v. Alameida, U.S.D.C. N.D. Cal., Case No. C-90-3094 TEH (Special Master's Report and Recommendations re Defendants' Proposed Revised 2002 Hepatitis C Treatment Program at Pelican Bay State Prison, June 21, 2002), the other 33 prisons are covered only by Plata v. Davis (U.S.D.C., N.D. Cal. Case No. C-01-1351-TEH, Stipulation for Injunctive Relief (June 13, 2002), a recent healthcare settlement that is not specific as to HCV protocols.
Pelican Bay State Prison
PBSP operates under the Madrid "Revised 2002 Hepatitis-C Treatment Program at PBSP" (Program). Conceding therein that about 40% of all California prisoners have HCV (PBSP, with a population skewed to long-term prisoners with drug-use histories, is believed to be over 60%); the Program summary describes a three-phase breakdown of the PBSP HCV policy.
In Phase I (to be completed within 60 days), all prisoners who request screening shall be tested (without co-payment fee). Also to be tested are those presenting clinical symptoms of HCV, who will also be tested for hepatitis A and B immune status. If initial testing is positive for HCV, the viral load (PCR) shall be checked and the prisoner informed of the results. Those with positive PCR results shall proceed to Phase II.
Entry to Phase II puts one into the Chronic Care Program, which includes vaccination against hepatitis A and/or B within 180 days. Next comes the screening process, wherein Phase II patients may be excluded from getting treatment (Phase III). The barriers include: (a) early release date; (b) a poor compliance record for prior medical treatments; (c) complications, including cardiopulmonary disease, thyroid disease, blood disorders, seizures, cancer, diabetes or mental disorders; (d) recent suicidal behavior; (e) compromised immune system; (f) de-compensated liver disease; (g) active substance abuse. Additionally, prisoners must sign a contract agreeing to abstain from alcohol, drug use, tattooing and sexual activity. Ineligibility will be reassessed every 6-12 months.
Significantly, those patients having persistently normal ALT [liver enzyme] levels are not eligible for treatment. The theory here is that Hepatitis-C is a very slowly progressing disease, and that if one suffers no measurable liver dysfunction, treatment is not urgent. Thus, only the sickest will get the anti-viral treatment regimen. This may be cost-effective, but it leaves the ineligible yet contagious patients to parole thus squandering the opportunity to stem the epidemic spread of the disease to the community. However, seriously ill patients are frequently too ill to sustain the treatment.
Before treatment for Phase III entrants may begin, a liver biopsy shall be performed to determine whether the liver is in Stage 1,2, 3 or 4. Stages 3 and 4 (serious damage) cases will receive treatment. Continuation of the treatment is conditioned on the measured results, wherein if no response is initially obtained, treatment will be deemed a failure and terminated. Treatment, if ordered after the biopsy, will run from 24-48 months (depending on genotype) or until non-responsive.
As of June, 2002, "dozens" of PBSP prisoners (representing perhaps 1% of the infected population there) had received biopsies and vaccinations in the prior six months. Any remaining biopsy/vaccination backlog was to be cured by September 15, 2002. Results shall be monitored by the court's Special Master, John Hagar. The prisoners' attorney is Steven Fama of the Prison Law Office.
San Quentin State Prison
San Quentin's 5,500 prisoners included 3,000 in the Reception Center, 1,000 in dorms (mostly parole violators), 350 lifers, 500 medium security non-lifers, and over 600 on Death Row. Presently, seven lifers and two dozen condemned prisoners are believed to be receiving HCV anti-viral treatment, or about 1% of the 2,200 estimated HCV carriers (assuming a 40% infection rate).
San Quentin is drafting an HCV treatment protocol, modeled after PBSP's. The most significant proposed departures from the PBSP template are greatly expanded times to complete serial pre-treatment tests, and specifics tying down open-ended language in the PBSP protocol as to exclusion parameters. The San Quentin plan expands to twelve months the six month PBSP time for completion of hepatitis A/B vaccination. Depending on genotype, treatment is to be denied if parole is expected within 18-24 months from initiation of Phase I. But a caveat lurks that tolls this initiation marker by the added time to "complete pre-biopsy evaluation and to perform a liver biopsy." Compounding the open-ended "pre-biopsy evaluation" delay is another eligibility requirement to "fail" three consecutive ALT enzyme level tests within three months.
In sum, Phase I (2 months), vaccination (12 months), ALT tests (3 months), scheduling/evaluating biopsy (unk.) and parole-ineligibility for up to 24 months add up to a very high bar to admission to treatment. Ironically, this medical policy favors those prisoners least likely to parole (condemned, lifers, and long-termers), while affirmatively excluding all those scheduled to soon return to the community (i.e., most prisoners at San Quentin) contagion and all. Source: Hepatitis C Clinical Management Program (Draft, November, 2003).
Ironwood State Prison
The Ironwood Men's Advisory Council (elected prisoner representatives) prepared an incredibly comprehensive Hepatitis-C report entitled The Silent Epidemic for their Warden, James E. Hall. Authored by a prisoner-attorney, this technically accurate, compellingly written document covers all aspects of HCV from its bare description to details of transmission/ susceptibility that include the realities of prison life (e.g., tattooing, barbering, mechanical restraints, sexual activity). It includes a summary level review of relevant case law, a glossary of technical terms and a long list of resources.
Based upon prisoner experience at Ironwood, it is a tale of the truth from inside the walls that should be read and considered by every legislator in the nation. It may prove troubling reading for Ironwood's progressive Warden Hall [see PLN, Nov. 2003, p.3] to note that although Ironwood had (as of March, 2003) 76 patients approved for treatment (one waiting for two years), none had actually started, due to lack of funding.
Slow-playing the treatment of HCV under the settlement terms of Plata may have received a recent attitude adjustment from U.S. District Judge Thelton E. Henderson. On January 26, 2004, Deputy Attorney General John W. Riches was removed from the Plata case after Riches pooh-poohed the court's complaint of lack of the state's compliance as "gratuitous and irrelevant to the proceedings, and certainly non-binding." After one month for a new Deputy Attorney General to get up to speed, the parties were due back in court on February 23.
The Nation: A Failing Grade
The United States has an epidemic infection of HCV, a disease spread even more easily than it's publicly recognized viral companion, HIV. The largest concentration of victims is in prisons and jails, thereby offering the greatest opportunity to check the disease. Instead, leaders in every jurisdiction are ducking the issue on the basis of cost and disdain for prisoners. With fewer than 1% of infected prisoners being treated, and 1,300,000 going through the revolving doors of prisons and jails each year, and with Hepatitis-C projected to kill more Americans per year than does AIDS by the year 2020, the epidemic of HCV simply cannot continue to be the prisons' dirty little secret.
Source: Eugene Register-Guard, New York Times, Lansing State Journal, Columbus Dispatch, Lincoln Journal Star; PLN subscriber letter, Milford Daily News, Philadelphia Enquirer.