Thousands of New York inmates have hepatitis C. Only a few hundred get treatment.
Kai Wright
Village Voice
November 29, 2005 It's hard to imagine how a doctor could miss Jimi Hammerstein's primary health risk. The graying Brooklyn native spent most of the last 10 years upstate for slinging dope in Park Slope—back when the neighborhood was still in transition. "I remember when this neighborhood wasn't nothing like this," he says, laughing as he sits in a drop-in center for ex-offenders on Fourth Avenue, the Slope's still-gritty border with Downtown Brooklyn. "This was like, dope land!"
Dope land's geography extended into the prison compounds Hammerstein bounced between. His habit continued once he was inside, and just as intensely. Most inmates snort heroin rather than inject it, but as Hammerstein describes the scene, "You got the die-hard dope fiends like I was, where there's only one way to fly. If you're going to do any kind of substance, you might as well shoot it."
Hammerstein's commitment to the needle made him a textbook candidate for two of the modern era's most aggressive communicable diseases: HIV and hepatitis C—a deadly virus that, when left untreated, slowly devours your liver. He tested positive for HIV back in 1989, before he entered prison. He says he copped to the infection at the beginning of his two bids, but he'd never heard of hep C and claims no one— certainly not corrections health officials—ever asked him about it.
Only after his release last year did the questions begin. "People used to say to me, 'Oh, you're HIV; are you hep C too?' " Hammerstein remembers. "I'd say no. And they'd say, 'Oh, that's unusual.' " He'd shrug the idea off. "I'd been taking tests up north for years, and no one mentioned anything about hep C." His doc on the outside finally insisted he get tested, and in what should have been no surprise, he was positive.
Like Hammerstein, thousands of prisoners around the country are slowly dying from a wholly treatable disease because corrections officials are doing everything possible to avoid caring for them. New York is among the worst offenders, as by most estimates it boasts more inmates living with hep C than any other state. But after years of advocates and inmates fruitlessly lobbying for change, a series of recent lawsuits, including a class action case now pending in federal court, appears to have finally forced the state's hand.
Over the last three decades, hep C has been a stealthy but virulent sidekick to its celebrity sister HIV. Nearly 3 million people nationwide now have chronic infections—triple the HIV caseload. They are uniquely concentrated in prisons: At least 14 percent of New York's inmates are known to have hep C. And as these legions barrel toward the disease's end stage, in which the inflamed liver turns cirrhotic, they promise to collapse the teetering liver-transplant market. Already, hep C is the number one reason for swapping out a liver; the waiting list for transplants is 17,000 people deep and growing. The sooner you start treatment, the less likely you'll need one.
In response to growing awareness about the epidemic—and its concentration among drug users who cycle in and out of incarceration—the state corrections department says it now offers tests to all incoming prisoners whose profiles raise red flags, as Hammerstein's should have. But even for those who get screened, learning you've got the disease is where, for most, the process ends. According to a Justice Department census, as of 2000, only about 300 of the state's estimated 10,000 hep C–positive inmates were being treated.
Prison health advocates charge this dismal rate is no accident. Coincidentally or not, treating hep C is one of the more expensive tasks in medicine. The multi-drug regimen can cost as much as $35,000 per patient. Corrections already spends almost $23 million a year on AIDS meds, nearly 40 percent of its whole pharmacy budget.
Until mid October, when the department began revising its policies in response to ongoing litigation, any inmate needing hep C treatment who had a history of using drugs—as does almost everyone with the virus—was required to first enroll in a six-month class for users. The official approach, which has been slowly shifting over the last couple of years, originally forced inmates to complete the course before getting treatment. It was expansive and unbending: If you'd ever done drugs or alcohol in your life, you had to take the class.
"You got guys that been in the system eight, nine, 10 years," scoffs Rahiem (not his real name), a hep C–positive lifer at the medium-security facility in Auburn who refused to take the drug class and so hasn't gotten treatment. "They don't have no record of drug use from disciplinary actions. But they're denied treatment." Rahiem wears long gray dreadlocks and stares with measured intensity when insisting that he last got high in 1973. But his old girlfriend once got charged with smuggling whiskey into the visiting room, he says, so now he's stuck with a user label.
"These rules are barriers that they set up," complains Romeo Sanchez, a hep C–positive ex-offender who organizes prison activism at the New York City AIDS Housing Network, "because they don't want to pay for it."
But as Robert Hilton found out, even if you go along with the rules, the outcome is often the same: no treatment. Hilton is the lead plaintiff in the new class action, filed in federal court on August 17.
Hilton began treatment for hep C at Bellevue in 2002. But a few months after starting, he became homeless, and his treatment was interrupted. In August 2004, he was locked up on a parole violation and shipped upstate to Altona. Upon intake there, he underwent a routine exam at which he told doctors about his infection, the resulting liver disease, and his treatment history.
But the medical staff waited two months to conduct its own tests, according to the complaint, and a full seven months to recommend him for treatment. Then Chief Medical Officer Lester Wright ruled Hilton couldn't start until he took drug addiction classes, even though no previous doctor in or out of the system had suggested it and even though Hilton professed to have not used drugs in 13 years—much of which time he spent passing drug tests as a parolee.
Hilton acquiesced and signed up for the class—only to be put on a lengthy waiting list. He was then transferred to another facility, where counseling staff again tried to enroll him in an addiction class. This time, his enrollment was turned down 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.
In previous suits, the corrections department has offered a reasonable-sounding defense. Hep C treatment is no joke—at least a shot a week and daily pills that can cause depression and flu-like symptoms similar to those of heroin withdrawal. Even the regular needle use can be traumatic for someone kicking an old habit. So the department worries about triggering relapses. And all credible medical guidelines stress that no one who's actively using drugs or alcohol should start treatment without getting sober, lest they fail to complete the regimen.
The stakes are high: If you start and don't finish, your virus will likely mutate, developing the sort of drug resistance we've heard so much about with HIV.
Critics, however, point out that all of the guidelines cited by corrections warn only against treating active users. The concern over relapse is the department's own.
In early November, the prison officials submitted a sweeping policy change to the U.S. District Court for the Northern District of New York, asking that a central part of Hilton's case be dismissed based on that change. The new policy removes the drug abuse class requirement but maintains an insistence that inmates have "no evidence of active substance abuse" in the previous six months. Those with evidence of such will be evaluated on a case-by-case basis.
Alexander Rienert, an attorney with Koob & Magoolaghan, which is leading the Hilton class action and has led a number of previous hep C suits, says that's not near good enough. He wants to see a far more detailed portrait of how the system will scale up treatment—and how it will get those it has previously turned away into treatment. "What Dr. Wright is saying is, trust us, you don't have to be involved anymore," scoffs Rienert. "But our experience is, the only time an individual gets treated is when an attorney has stepped in."
Moreover, Rienert says he's already received at least one new complaint from an inmate who has been denied treatment based on his failure to take a drug abuse class.
Milton Zelermyer, a staff attorney with Legal Aid's Prisoners' Rights Project, adds that there remain plenty of ways for corrections to ration treatment. Already, the prisons only test certain inmates for hep C, and as Hammerstein's experience shows, many likely candidates slip through unscreened. But effective hep C screening and treatment also require extensive diagnostics, including regular blood tests and a liver biopsy—just the sort of thing the department delayed for months before denying Hilton based on the drug class rule. So the new policy looks like progress, Zelermyer says, but "how it works in reality is another question."
Prison health advocates say the system's failure to deal adequately with hep C is just the latest disaster to come from letting prison guards control public health. Even as the narrow legal battle over hep C intensifies, advocates are pressing a broader legislative reform. Of course, for activists in Albany, reforms for guys like Rahiem and Hammerstein and Hilton have been the most dead on arrival.
The corrections department's health care challenge is already massive—it runs what amounts to the nation's largest HIV medical practice, for instance. Yet it is exempt from Department of Health oversight because state law considers its facilities more akin to private colleges than public hospitals. The state assembly wants that law changed, but neither the health department nor corrections wants to be part of an arranged marriage; bills calling for it have twice stalled in the senate.
And that leaves dying inmates' futures in the hands of the courts. "There could be something out there for you—whatever medicine, whatever program, whatever doctor you have to see—and they ain't telling," Hammerstein complains, "because the facility don't want to go for the money."
