Prisons Breeding Ground for Hepatitis C
It's been called the nation's most insidious virus.
In a medium-security prison in La Grange, Kentucky, Anthony Nicholas Ware has got it. And at F.C.I. Coleman, a federal prison in Florida, Raymond James Hannum has got it as well.
A 'silent epidemic' that has swept the nation, hepatitis C virus (or HCV) is now the most common, chronic, blood-borne infection in the U.S. And it's precisely the stealthy, long-term silence of the virus that makes it as dangerous as it is. Because hepatitis C often causes no noticeable symptoms for up to 20 or 30 years after infection, most of those who are infected have no idea they are living with the potentially life-threatening infection.
The Damage Done
Conservatively, it's estimated that some 4 million Americans are now infected with the hepatitis C virus (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 HCV in the country. From state to state, between 20% to 60% of the current national inmate population is believed to harbor the virus, which can lead to chronic liver disease, cirrhosis and liver cancer. There is no vaccine--or foolproof cure--for HCV.
Don't Ask, Don't Tell
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 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 inmates--or the community at large.
"Prisoners are going in expecting to do 10 to 15 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 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. 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 10 to 20 percent success rate when used alone. Combination therapy, using both interferon and ribavirin, is effective 30 to 40 percent of the time. Both drugs are known to have potentially severe side effects.
"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 Corrections for over a decade relating to the care of HIV-positive prisoners, says that he and others believe upwards of 30 to 40 percent of all inmates are infected, amounting to roughly 25,000 prisoners. Co-infection 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 Corrections did not provide a response to this allegation or to general questions about treatment policies.
Cruel & Unusual Punishment
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 inmates have a right to adequate medical care for serious medical needs.
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 put 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 quarter-million dollars.
Dying For Treatment
Anthony Nicholas Ware, a 42-year-old inmate serving a 22-year-sentence at the medium-security 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 correctional facility, 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, and his requests to treat himself with herbs and vitamins were thwarted. Despite his doctor's approval, says Ware, he could not obtain the prison's permission to order liver-cleansing products like milk thistle from outside vendors.
Alan S. Rubin, a Louisville-based attorney representing Ware and roughly 50 other inmates 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. The list of exclusionary criteria, obtained by this reporter, mandates that inmates who are HIV-positive, and those who have a history of illicit drug use in the preceding 12 months, cannot be treated.
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 inmates who are learning that they're HCV-infected and want to be monitored and treated.
"It's not right," says Rubin, who points to testimony from Kentucky's Department of Corrections that one-third of inmates are likely infected with HCV. "In the next five to ten 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 20-year 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 Veteran's Affairs office 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, Federal Judge John Heyburn II agreed, 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.
Where Did I Get That?
"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 Facility--as in most other state prisons in the country--no formal prevention or peer education program specifically geared toward HCV currently exists.
Interviewed by phone from prison, Anthony 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 inmates 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 study of how prevalent HCV is in the prison population. A March 1996 research study, completed in cooperation with the California Department of Health Services, demonstrated that the rates of infection among incoming inmates were 54.5 percent for women, and 39.4 percent for men. Among HIV-positive men, 61.3 percent were found to be co-infected with HCV, while HIV-positive women were found to have an astounding 85 percent co-infection rate with HCV.
But treatment for HCV is available in California state prisons, answers Thornton, and includes treatment for those who are co-infected with HIV. "Inmates are treated on a case-by-case basis," she says. "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."
Peer education programs are continuing to expand, she adds. "The key here is to educate, working toward elimination of the source for disease transmission."
But budgetary restrictions are likely to prevent the implementation of more widespread treatment. In fiscal year 99/00, the Department of Corrections was funded only $325,000 to provide drug 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 inmates would be eligible for a full course of drug treatment, out of a current state prison population of over 161,000 men and women.
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 and 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 Prison Project, insists that Americans have to begin thinking of prisons "as part of 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 non-violent crimes, doing time for five, ten or 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?"