Prison outbreak: an epidemic of hepatitis C.

Rodger Anstett's death in 2003 was either sudden nor inevitable. The symptoms started back in 1998: the abdominal pain around his kidneys and liver, the achy joints, the debilitating fatigue. Blood tests later that year showed that his liver enzymes were far above normal--one of them was eight times higher than it should have been. It all pointed to advanced hepatitis C infection, but Anstett's doctor waited another two full years before giving him a test to confirm the presence of the disease. It was another year before the doctors for Oregon's corrections system, where Anstett had been locked up for twelve years, treated him, just a month before his release. At that point, his liver was far too damaged for the drugs to do much good, and he died a year and a half later.

Thousands of hepatitis C-positive prisoners around the country are today facing Anstett's dilemma--barreling towards a preventable death because they are at the mercy of corrections health systems that are refusing to treat them. Moreover, say an increasing number of public health watchers, the unchecked hepatitis C epidemic inside the nation's prisons is undermining efforts to bring it under control in the broader community.

"No matter what you're in prison for," says Rodney Anstett, who watched his brother Rodger wither away from liver failure, "you deserve basic human rights." Rodger was the lead plaintiff in a lawsuit making just that assertion. Two days before his death, Anstett recorded a deposition for a case that would be the first successful class-action challenge to a state prison system's hepatitis C treatment policies. Last year, the state settled the suit, agreeing to open up treatment, and a federal judge is now monitoring its compliance with that settlement.

But Oregon's case is unique only in that the courts have intervened. Hepatitis C infection rates in some incarcerated populations are as high as 42 percent, according to an article in the Clinical Infectious Diseases journal, and anywhere from 15 to 30 percent of all prisoners are believed to carry the blood-borne virus. More precise counts are unavailable because few systems have come up with effective ways to screen for it-indeed, few even tried until federal health officials prodded them into action in recent years.

"Most prison systems are purposely not testing for hep C," charges civil rights lawyer Michelle Burrows, who led the Oregon lawsuit, "so they can say 'we don't know who's got it,' and don't have to treat it."

Science didn't identify hepatitis C until 1989, and it has been overshadowed by its more prominent viral sister, HIV. But the U.S. Centers for Disease Control and Prevention (CDC) estimates at least three million people nationwide now have chronic hepatitis C infections-triple the HIV caseload. Most are injection drug users, since unlike HIV the hepatitis C virus spreads less easily through sex than through direct blood-to-blood contact--which explains the epidemic's intensity among people who cycle through prison.

Hepatitis C is emerging as a leading cause of death in several state prison systems, according to Scott Allen, the medical director of Rhode Island's corrections department. It's also the number one reason for liver transplants in America. The disease has overwhelmed the market, creating a waiting list of more than 15,000 people.

As with most diseases, early treatment separates the well from the ill. But hepatitis C-positive prisoners around the country testify that prison health care providers are delaying treatment as long as possible.

Many prisons insist that anyone with a history of drug or alcohol use--no matter how long ago--complete a rehab course before beginning treatment. And they usually add a requirement that inmates be far enough away from any potential release date to guarantee that they will complete the year-long treatment regimen while still locked up. Finally, many systems also bar anyone with potential mental health problems from getting care. Oregon denied Anstett's repeated requests for treatment based on his need for a psych evaluation, which he never got, and the requirement that he take a drug abuse class, which, he testified, he had previously completed.

There are few national or even state-by-state numbers on how many prisoners actually get medical care under these policies. But Oregon had treated just a dozen of its at least 3,500 hepatitis C-positive inmates when Burrows filed suit.

A Justice Department census in 2000 tried to uncover how many inmates are tested and treated nationwide. It found that around 57,000 hepatitis C tests were conducted in the preceding year (a quarter of which were in California), and a whopping 31 percent came back positive. But of these nearly 18,000 people, only 4,750 were being treated (and 40 percent of those were in California alone). In New York State, which has about 10,000 hepatitis C-positive inmates, the highest in the nation, only about 300 were being treated, according to the Justice Department's census.

In August, New York civil rights lawyers filed a class-action suit challenging that system's policy. The lead plaintiff, Robert Hilton, had begun treatment at a New York City public hospital for his hepatitis C and subsequent liver disease in 2002. A few months after starting, he became homeless, and his treatment was interrupted. In August of 2004, Hilton was incarcerated on a parole violation and, after a few days in a downtown holding cell, shipped to a facility upstate. Upon intake there, he underwent a routine exam, and he told doctors about his infection, his liver disease, and his treatment history. Court records show that the doctors received copies of a May 2004 medical record confirming Hilton's report and recommending that his treatment resume.

But the medical staff allegedly waited two months to conduct its own screening, and a full seven months to recommend him for treatment--a process that would have taken weeks at best on the outside. By May 2005, an outside specialist had also recommended treatment for him, he'd been cleared by a mental health evaluation, and he'd signed the necessary consent form. Then, according to the suit, state Chief Medical Officer Lester Wright stepped in and shut the process down by demanding Hilton first take drug addiction classes, even though no previous doctor inside or out of the system had suggested it, and even though Hilton professed to not having used drugs in thirteen years.

Wanting his treatment resumed, Hilton acquiesced and signed up for the class--only to be put on a lengthy waiting list, since the facility at which he was incarcerated didn't have enough classes to accommodate the demand. He was then transferred to another facility, where counseling staff again tried to enroll him in a drug addiction class. This time, his enrollment was denied because he would be eligible for parole before the class finished. "As antiretroviral treatment continues to be denied on the basis of this Catch-22," the class action complaint notes, "Mr. Hilton's liver continues to deteriorate."

The state declined to comment on this and other suits it now faces related to its treatment policy. It did, however, file court papers in November asking that the suit be dismissed because, it said, it had just changed its treatment policy to ensure that "programmatic needs for alcohol and substance abuse treatment do not interfere with medical requirement" for hepatitis C treatment.

But Alex Reinert, who is representing the plaintiffs for the firm Koob & Magoolaghan, charges that he has already received at least one complaint from a prisoner who says he was denied treatment for not going to rehab, even though that policy was supposedly repealed.

"What Dr. Wright is saying is, 'Trust us, you don't have to be involved anymore,' " Reinert says. "But our experience is, the only time an individual gets treated is when an attorney has stepped in."

Coincidentally or not, treating hepatitis C is one of the more expensive tasks in medicine. Unlike HIV, doctors believe it can be permanently eradicated from a patient's body. But doing so can cost as much as $35,000 per person. Even evaluation can be an expensive process.

Corrections officials around the country, however, say they're just following federal health agencies' guidelines. In 2002 and 2003, in response to growing concern about the hepatitis C epidemic, the National Institutes of Health (NIH) and the CDC each issued recommendations for treating the virus. Around that time, state correctional officials gathered in San Antonio to share their experiences and compare ideas. They came away agreeing that each system should come up with firm criteria for both screening and treatment decisions, according to people in attendance. The rehab, time-remaining-on-sentence, and psych evaluation requirements fast became national standards.

Corrections health officials do face a complicated set of considerations. Because hepatitis C is a slow-progressing virus and because medicine is still learning how it works, just how fatal it is remains unclear. Currently, the CDC estimates that 5 percent to 20 percent of those infected with hepatitis C might develop cirrhosis over two or three decades. When and how to treat those who may not progress to that stage is a difficult question, and not just because of the costs. Hepatitis C treatment is brutal. Even the most advanced therapies involve regular injections. Side effects include psychiatric problems, particularly depression, and flu-like symptoms similar to heroin withdrawal--taxing circumstances for someone trying to stay sober. Both the CDC and NIH guidelines urge caution in treating active users, because failed adherence can jeopardize treatment success.

But the prison systems' policies are far inferior to the standard of care on the outside. Both the CDC and NIH stress that even active drug use should not automatically rule someone out for treatment. And at least one study--conducted by Rhode Island's corrections department--found that pre-existing mental health problems don't get in the way of treatment. As a result, class-action suits have been lodged in at least four states since 2001.

Oregon's case has been the most watched. The settlement was unprecedented. Outside specialists crafted a treatment policy that Burrows calls "the Cadillac standard." Doctors can still demand drug rehab classes and delay treatment if there's not enough time left on the sentence to finish a course of medicines, but those judgments must be made case by case, and everyone who tests positive must get at least a full medical workup to determine whether immediate treatment is needed.

Since the agreement, Burrows estimates, the state has begun treatment on around 1,000 inmates. But the legal fight continues, as several inmates and families--including the Anstetts--filed a wrongful death and damage civil claim in May. A spokesperson for the Oregon Department of Corrections declined to comment on the case or the department's hepatitis C treatment policies.

While states are failing to provide adequate treatment for hepatitis C-positive inmates, they are doing even less to prevent further spread of the disease. In many places, prisoners receive no information whatsoever about how to live healthy lives with the virus and how to prevent passing it on.

Prisoners nationwide testify that the sorts of behaviors hepatitis C thrives upon are widespread behind bars. While locked-up users more often sniff or smoke heroin than shoot it, plenty inject it as well. Some fish used syringes out of hazardous waste buckets in the infirmary and sell them on the black market. Others fashion makeshift "works" out of an eyedropper and a needle.

"I actually made a syringe out of a Bic pen," says Greg, who spent seventeen years in New Jersey prisons and requested anonymity. "If you get one set of works, the whole wing's using it. And that's how HIV and hepatitis C are spread. That's where I believe I got it."

New Jersey faces at least one lawsuit challenging its hepatitis C treatment policy. New Jersey Department of Corrections spokesperson Matthew Schuman refuses to comment on the case or the state's hepatitis C policies. While he acknowledges that injection drug use through shared syringes takes place, he stresses the department has a "zero tolerance" policy and has made strides cutting out drugs of all sorts in recent years. "When you're dealing with inmates," he says, "it's always going to be a cat and mouse game."

Widespread tattooing inside prison offers a similarly efficient way to contract hepatitis C. Tattoo machines are as easy to make as syringes--just pull a motor out of an old Walkman and hook it up to anything sharpened into a point. The problem is the ink, which prisons ban. So jailhouse artists shave down lead pencils or burn checkers and use the ash. Because they go to such extremes to get this valuable commodity, the artists do not dream of making a new pool each time they have a new customer, as those on the outside do. Hepatitis C can live for a few days outside the body.

And then there's sex. In an informal survey by the Latino Commission on AIDS of just over 100 New York State prisoners and ex-offenders in 1999, 63 percent of respondents reported having witnessed other inmates having sex. Nearly a fifth acknowledged having had sex themselves. And more than 30 percent said they knew someone who had contracted HIV while in prison due to unprotected sex.

University of North Carolina researcher James Thomas says all of this raises questions about the relationship between the hepatitis C and HIV epidemics in prisons and in neighborhoods--particularly African American ones. His research suggests "incarceration is leading to STDs," he says, adding that there appears to be a dynamic interaction between sexually transmitted disease patterns in the street and in the jailhouse. An estimated 1.4 million hepatitis C-positive inmates are released from America's prisons and jails each year, according to the Clinical Infectious Diseases journal.

Greg doesn't know if he infected his wife or not. She left him after his last prison term and now refuses to tell him if she's hep C- or HIV-positive. But the possibility that he brought the virus outside the prison walls is one that America's corrections health care system doesn't seem to grasp.

"They really don't care," scoffs Greg. "They figure we're criminals, so we're going to die anyway one way or the other."

Kai Wright is a writer in Brooklyn, New York, and editor of BlackAIDS.org. You can read more of his work at KaiWright.com.