It's conservatively estimated that some 4 million Americans are now infected with hepatitis C (HCV). By comparison, less than 1 million Americans are infected with HIV, the virus that causes AIDS. And the nation's 2 million prisoners aren't even included in that estimate. While the number of new HCV infections in the nation has declined over the last decade, the incremental progress that has been made on educating and testing the general public is now severely threatened by what amounts to staggering infection rates behind bars.
By many accounts, the nation's prison populations are harboring the highest concentrations of hepatitis C in the country. From state to state, between 20% to 60% of the current national prison population is believed to harbor the virus, which can lead to chronic liver disease, cirrhosis and liver cancer. There is no vaccineor foolproof curefor HCV. In response, state prison administrators have been implementing varied and divergent approaches to address the rates of infection.
Some state prison systems, including Oklahoma's, have gone so far as to adopt a "don't ask, don't tell" policy as a way of avoiding costs affiliated with treatment of HCV. Faced with 28% and 37% infection rates among male and female inmates, respectively, the Texas state prison system took a different approach and drafted a plan last year to provide HCV testing, monitoring and treatment to those with chronic infections.
Other state correctional systems, including those in New York , Washington, Colorado and California, say they provide testing upon request, and treatment if a prisoner can pass certain criteria. But prisoners and their advocates insist that too little is being done, too late. The bottom line, they say, comes down to money, and not the welfare of prisonersor the community at large.
"Prisoners are going in expecting to do 1015 years, and they're ending up with a death sentence," says Jackie Walker, AIDS Information Coordinator for the National Prison Project of the American Civil Liberties Union (ACLU), in Washington, D.C. "They're not getting the [medical] treatment that they deserve to receive."
Often, says Walker, prison officials cite the high cost of treatment to prisoners as the reason for the denial of HCV treatment. And treatment is expensive. Only two antiviral drugs are currently approved for use in treating HCV: interferon and ribavirin. Standard treatment per person, per year, can run from $8,000$20,000.
Unlike HIV, however, HCV medications are usually given over the course of one year. Nor is drug therapy guaranteed to work. According to the Centers for Disease Control and Prevention (CDC), interferon has a 1020% success rate when used alone. Combination therapy, using both drugs, is effective 3040% of the time. Both interferon and ribavirin are further known to have potentially severe side effects.
Yet not every prisoner infected with HCV requires, or wants treatment, say those involved in advocating for the medical rights of prisoners. Many simply want to be informed of their status, to receive information about the virus, and to be monitored to make sure that the virus is not progressing to lifethreatening levels.
"This is an area where, ultimately, the patient should be able to choose whether to go on the treatment. But in [the prison system], that's not the way it works," says Jack Beck, a Supervising Attorney of the Prisoner's Rights Project of the Legal Aid Society in New York. "If someone knows what the risks and benefits are, they should be able to receive treatment as long as it's within medical guidelines. And that is not currently the case."
Beck, who has been involved in a case against the "New York Department of Correctional Services" (DOCS) for over a decade relating to the care of HIVpositive prisoners, says that while a seroprevalence study within the NY state prison system is still pending, he and others believe that upwards of 30 to 40% of all inmates are infected, amounting to roughly 25,000 prisoners. Coinfection of HIV and HCV, according to Beck, is also very high among the prisoners.
But only slightly over 100 inmates are currently receiving treatment, says Beck, out of more than 70,000 prisoners statewide. That number is as low as it is, he says, because the diagnostic process in prison can drag on for months, and the criteria for treatment is very difficult to meet. "I believe part of the strategy [of prison officials] is to `filter' as much as possible, and to restrict the number of people on therapy, because if they really started treating all the people who are infected, the cost would be phenomenal." The "New York State Department of Correctional Service" did not provide a response to this allegation or to general questions about treatment policies.
Beck and other advocates for prisoners say that not treating inmates in need of care is both a violation of the 8th amendment (prohibiting "cruel and unusual punishment"), as well as a violation of a landmark 1976 Supreme Court ruling in Estelle v. Gamble, which determined that prisoners have a right to adequate medical care for serious medical needs.
Of those infected with HCV, about 85 percent develop chronic, lifelong infections, according to the CDC. Fully 70 percent of those infected will develop chronic liver disease, and 15 percent will develop cirrhosis of the liver. People at particular risk for infection include past or present injection drug users (IDUs), medical care workers exposed to contaminated blood, and those who received blood transfusions before 1992, when a screening test was widely implemented. According to the CDC, roughly 20 percent of recent cases of HCV infection are due to sexual activity. Unsterilized tattoo or piercing equipment, as well as intranasal drug use also puts people at higher risk for HCV.
Some 10,000 deaths a year are currently attributed to chronic HCV infection, and the CDC has predicted that this number will triple in the next 20 years. HCV infection is also the most common reason for liver transplantation in the U.S. One transplant can easily cost over a quartermillion dollars.
Purely from an economic standpoint, Beck insists, it doesn't make sense to ignore treatment while prisoners are incarcerated. "Treatment is not effective at the end stages [of this disease]," he says. "If you don't take this opportunity, these people are going to be out on the street, and we're going to have these terrible expenses with liver failure and the costs associated with that."
Research presented at the 1999 National HIV Prevention Conference in Atlanta confirms the basis for these concerns. According to study commissioned by the National Commission on Correctional Health Care, and presented by Dr. Theodore Hammett of AN Associates, onethird of all people with HCV infection in 1996some 1.4 million people had passed through a correctional facility in that year. Anthony Nicholas Ware, a 42yearold prisoner serving a 22yearsentence at the mediumsecurity Luther Luckett Correctional Complex in La Grange, Kentucky, hopes that he will receive treatment before his HCV infection worsens significantly. Already, says Ware, he gets severely fatigued, and suspects that his infection has progressed to the middle, or moderate fibrosis stage.
Ware, who has joined a lawsuit against the DOC, can only guess at the status of his HCV infection because the prison has yet to perform a requested liver biopsy. Ware says that he has been requesting additional testing and treatment for his HCV since 1997. That situation is echoed by Raymond James Hannum, a prisoner at F.C.I. Coleman in Florida.
Hannum, who has been moved three times since entering the federal prison system, says that he has been pleading to be treated for his HCV infection for six years, with no success. Hannum admits that his blood is tested regularly, but says that requests for a liver biopsywhich would indicate the extent to which the infection has progressedhave thus far been denied. Hannum's medical records clearly indicate that he has been classified with "chronic persistent hepatitis C."
"Generally, in terms of health care, it's better to be in the federal system than the state system. There's a greater level of oversight," says Walker of the ACLU's National Prison Project. But Walker says that the regular number of letters she receives from federal prisoners indicate an obvious problem surrounding the treatment of HCV infection. "I'm just not seeing that prisoners in federal prisons are receiving [adequate] treatment for hepatitis C."
"Not knowing you have HCV is one thing, but the F.B.O.P. is well aware of my problem, so there is no excuse for nontreatment in my case," says Hannum. "I can tell you exactly why I'm not getting treatment: Money." The Federal Bureau of Prisons did not respond to general questions about testing and treatment procedures. In the past, the Bureau has commented that prisoners are tested for HCV infection if they shows signs of infection, and that treatment is available to those who qualify.
Back in Kentucky, Ware's requests to treat himself with herbs and vitaminson the advice of his fullblooded Native American herbalist motherwere thwarted. Despite his doctor's approval, says Ware, he could not obtain the prison's permission to order livercleansing products like milk thistle from outside vendors.
Alan S. Rubin, a Louisvillebased attorney representing Ware and roughly 50 other prisoners in their complaint against the Luther Luckett Correctional Complex, says the prison has always maintained that treatment is available, but that no one was able to meet strict treatment criteria. That exclusionary criteria, obtained by this reporter, includes those who are HIVpositive, and those who have a history of illicit drug use in the preceding 12 months.
Already, says Rubin, at least two people have died behind bars at this prison because of complications from HCV. And he continues to receive letters on a weekly basis from prisoners who are learning that they're HCVinfected and want to be monitored and treated.
"It's not right," says Rubin, who points to testimony from Kentucky's Department of Corrections that onethird of prisoners are likely infected with HCV. "In the next 510 years, if something doesn't change, we're going to see the death rates from liver disease skyrocketing among prisoners and among those who have been recently paroled."
Rubin has won a single, significant legal victory on the issue of HCV treatment in the case of Michael Paulley, an Army veteran serving a 20year sentence at Luther Luckett. Paulley tested positive for HCV and had already developed cirrhosis of the liver when he was seen by a hepatitis specialist, Dr. Cecil Bennett, at the Louisville Veterans Affairs Medical Center.
Although the VA was willing to pay for Paulley's treatment, the Corrections Department denied him that opportunity, saying that he did not meet the prison's medical guidelines for drug therapy. Rubin, in turn, argued that the Corrections Department was using those guidelines as a pretext for denying all prisoners treatment for HCV for fear of the costs involved.
In March, 2000 Federal Judge John Heyburn II agreed with the findings of his Magistrate Judge, and issued an injunction ordering the prison to allow Paulley to be treated.
"Money, not medicine, was the driving force behind the department's decision," wrote Magistrate Judge C. Cleveland Gambill in his findings to Judge Heyburn.
Warden Larry Chandler's office did not respond to a request for an interview.
"Prisoners have a moral and legal right to medical care," says Dr. Bennett, who specializes in treating hepatitis in Louisville, and who advocates that all prisoners, as a first step, should be tested for HCV infection and told of their status.
In the Luther Luckett Correctional Facilityas in most other state prisons in the country, according to those who advocate for prisoner's rightsno formal prevention or peer education program currently exists which is specifically geared toward HCV. This, despite the fact that many prisoners nationwide are apparently getting infected for the first time behind bars, whether from unprotected sex with other prisoners, or from unclean drug or tattoo needles. Interviewed by phone from prison, Ware explains that he only discovered his HCV status after going through the state's Open Records Act and paying for copies of all of his lab work. "There it was: hepatitis C," says Ware. "I thought, `Oh my God, where did I get that?"
That situation, says Judy Greenspan of the prisoner's advocate group, California Prison Focus (CPF), is being seen in some of California's prisons as well. "Mostly, we've found that when prisoners have tested [positive for HCV], they haven't been told," says Greenspan. "People find out, for instance, when they're told they're not eligible for a job in the kitchen because they have hepatitis. That's the first they hear that they even took the test. Obviously, they're doing some sort of routine screening, somewhere. But most people are not being informed of their status."
Terry Thornton, Communications Director for the California Department of Corrections, explains that prisoners are medically evaluated upon entry to the CDC, and may request medical attention when they have health questions or concerns. "Hepatitis testing is done when medically appropriate as indicated by history, physical examination, laboratory testing showing abnormalities, or by inmate request," she explains.
The California state prison system is, in fact, one of the few that has taken the initiative of completing a comprehensive seroprevalence study of HCV. A March 1996 research study, completed in cooperation with the California Department of Health Services, demonstrated that the rates of infection among incoming prisoners were 54.5 percent for women, and 39.4 percent for men. Among HIVpositive men, 61.3% were found to be coinfected with HCV, while HIVpositive women were found to have an astounding 85% coinfection rate with HCV.
Greenspan says that those who are infected with HCV are finding it difficult to get treatmentor to receive adequate dosagesfor their infections. Already, she
Hepatitis C (continued)
says, two HIVpositive women have died gruesome deaths behind bars in the last year from complications owing to HCV infection.
But treatment for HCV is available in California state prisons, answers Thornton, and includes treatment for those who are coinfected with HIV.
"Inmates are treated on a casebycase basis," says Thornton. "We treat patients for hepatitis C, if they have otherwise healthy medical parameters and continue to do well while on the hepatitis medications. Many have successfully completed such therapy."
But budgetary restrictions are likely to prevent the implementation of more widespread treatment. In fiscal year 99/00, the Department of Corrections was funded $325,000 to provide interferon treatment. By the Department's own estimates, it costs $12,000$20,000 per year, per patient, to treat HCV. Even on the low end of that scale, only 27 prisoners would be eligible for a full course of interferon treatment, out of a current state prison population of over 161,000 men and women.
Thornton says that the Department of Corrections is currently seeking approval to supplement the existing health care budget, in order to cover additional costs for diagnosis, treatment and prevention.
For her part, Greenspan worries that more prisoners will die behind bars in the interim. "The tragedy about the Hepatitis C epidemic is that we're finding out about it in the sundown years of the AIDS activist movement," says Greenspan. "The mass activism [around HIV] has faded, and trying to get people motivated about this issue is difficult because most people infected [with HCV] have a history of injection drug use, are mostly poor people of color, and people who are in prison." "For many people who are in an out of the prison system, the only time they access medical care is on the inside. That's their reality," adds Greenspan. "If the system doesn't want to provide medical care, then they shouldn't lock up so many people."
Walker, of the ACLU's National rison Project, insists that Americans have to begin thinking of prisons "as part the community," on both humanitarian and public health grounds. "The majority of people are not in there for extreme, violent crimes," she says. "The majority are in there for nonviolent crimes, doing time for 5, 10, 15 years. These are people who are going to be returning to our communities. Do we want people coming back out sicker than they were when they went in?"
Silja J.A. Talvi is a Seattlebased journalist who has written for such publications as the Christian Science Monitor, MoJo Wire (www.motheriones.com) and The Progressive. A shorter version of this article was first written for High Times.
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