Many challenges face ex-inmates living with HIV
NEW YORK — Several times each month, a white bus picks up newly released ex-inmates at New York's Rikers Island jail complex and drives them to Harlem, where helping hands await at a transition program run by a nonprofit called the Fortune Society.
As they readjust to freedom, these new arrivals face the myriad challenges confronting anyone leaving jail or prison — and a daunting additional one. They have HIV.
While infection and incarceration represent a double challenge, this can be a health-care opportunity, says JoAnne Page, the Fortune Society's president. "You don't want to see people locked up — but if you're trying to reach people who are HIV-positive, that's the place to be."
Each year, according to federal estimates, one out of seven Americans with HIV passes through a correctional facility. Thousands are released every year — transitioning to the uncertainties and temptations of the outside world from a regimented environment where, in most cases, HIV medication is provided without charge.
Health professionals view imprisonment as a potentially vital chance to offer HIV testing and connect HIV-positive people to health care perhaps better than they've ever had before. Yet these experts worry about what happens post-release, when freedom can lead to disruption of the ex-inmates' medication, worsening their own health and raising the risk they'll infect others.
"In prison, they're a captive audience — the medical care is relatively straightforward," said Dr. Josiah Rich, a professor at Brown University's medical school and co-director of the Center for Prisoner Health and Human Rights.
"But when they're out, it can be hard to track them down," he said. "Often they're stopping treatment at exactly the point they're starting new sexual relationships. It's the perfect storm — exactly what we don't want from a public health standpoint."
Rich co-authored a study published in 2010 that set off alarm bells in the HIV-prevention field. It examined 1,750 HIV-infected inmates who'd been released from Texas prisons, and found that only 28 percent enrolled in an HIV clinic within 90 days of release.
That intensified efforts to ensure post-release continuity of care, and drew attention to agencies such as New York City's health department, which had an ambitious transitional care program in place for HIV-positive people exiting jail. At the core of the program are individual discharge plans, addressing each ex-inmate's need for housing, food, clothing, health care and other supports.
It's a massive operation, complicated by unpredictable length of stays for many of the inmates. Alison Jordan, who oversees the program, said her team draws up about 2,500 discharge plans per year, and more than 70 percent of the released HIV-positive inmates are linked to primary health care in their community.
Jordan and several colleagues, in an article two years ago, depicted New York city's jails as the epicenter of the national HIV and AIDS epidemic. The article gauged the HIV prevalence rate in the jail population at 5.2 percent — far higher than the 1.25 percent HIV rate in the nation's prison system or the 0.4 percent rate for the general population.
Jordan views the New York program as a model for jurisdictions elsewhere and has helped develop a curriculum and training manual in response to requests for assistance.
"It sounds so challenging, but on the front line, it's really simple," Jordan said. "It's caring about people, being sure their basic needs are met, and helping them get to the doctor."
The Fortune Society is among the city's partners in trying to meet these goals, sending its own staff into Rikers to help with the discharge planning and then offering newly released ex-inmates services ranging from mental health counseling to residential accommodation at its Harlem facility.
Without such support, says Page, many newly released people become disconnected from care.
"They return to old neighborhoods and fall back into habits that perpetuate a cycle of health decline and self-destructive behaviors that often lead back to jail or prison," she said.
For clients who have benefited from the Fortune Society's interventions, the sense of gratitude is palpable.
"I thought I was damaged goods. Coming here to Fortune helped prove me wrong," said Melissa Carter, who was diagnosed with HIV in 1994, and was behind bars in 1997-2000 for arson and writing bad checks.
In the decade after her release, she stopped taking her HIV medication — except for two pregnancies — and reverted to drug abuse. She lost custody of her children, and her health went downhill.
"It came to a point where I hit rock bottom — I walked away from everyone," she said. "The doctor told me, 'If you don't start taking meds, you're not going to live to see the end of the year.'"
Somehow, she ended up at the Fortune Society, and lived at the Harlem facility for two years — becoming a go-getter who helped lead group meetings and taking on baking and decorating chores for holiday celebrations.
Now she has reconnected with her children, is studying for an online degree, and recently married a man who also went through Fortune programs.
"I needed to change my life," Carter said.
Another Fortune client, 47-year-old Ken Sprague, said he was diagnosed with HIV in 1984, at a time when he was supporting his crack cocaine habit by shoplifting. Over the past 30 years, he was in and out of jail, and taking HIV medication only sporadically.
"I'm still here. I don't understand it," he said. "The people I knew back then — they were dropping like flies."
Finally wearying of his lifestyle, he checked in to the Fortune Society residence last year, says he's been drug-free for nine months and has developed a strong religious faith.
"The Fortune Society never judged me, but they were always there for me," he said. "They've been teaching me the skills to become a productive member of society."
That nonjudgmental approach contrasts sharply with the stigma that many HIV-positive people experience while incarcerated. Though it means forgoing treatment, some keep their status a secret for fear of being shunned or even assaulted if word got out.
"I hid my meds, so my cellmate wouldn't know," said Fortune Society client Gary Verga, who served 11 years in federal prison for bank robbery. "You can't let anyone know, or all of a sudden your friends won't be your friends."
Comprehensive, well-funded discharge-planning programs such as New York City's exist in a few other jurisdictions in the U.S., but they are far from the norm. There remains uncertainty among health professionals and policymakers as to exactly what approach is most cost-effective in promoting continuity of medical care among newly released people with HIV.
Multiple studies addressing the question are in progress, many of them federally funded. Among them is a clinical trial involving 400 people being discharged from incarceration in Texas and North Carolina; one group goes through the existing discharge process, while the others get more intensive follow-up, including reminders of medical appointments sent by text to cellphones they're provided with.
"We're working on motivation — how to make getting care a higher priority for those who are released," said the study's leader, Dr. David Wohl, a professor at the University of North Carolina's medical school and co-director of HIV services for the state's corrections department.
In general, Wohl said, America's prisons do a decent job of improving HIV-positive inmates' health as they take medication and, in most cases, are prevented from substance abuse.
"The problem is, they get out. That's sometimes the most dangerous part," Wohl said. "There's a lapse of medical care, re-engaging in drug use ... It's just a shame, because in prison we saw how well they were doing."
Increasingly, corrections officials are recognizing the continuity-of-care problem, Wohl said, because of the high medical costs of dealing with HIV-positive repeat offenders who return to prison much sicker than when they left.
While HIV treatment can be a strain on state prison budgets, it can be far more problematic for some local jail operations, especially in rural areas of the South, Wohl said. "One person with HIV can break a local jail's budget," he said. "Even if they want to do a good job, they have a hard time doing it."
In Georgia, many rural jails don't provide HIV medication, according to Dr. Anne Spaulding, an infectious disease expert at Emory University's school of public health who has been working in correctional health for 17 years. Inmates cut off from treatment can emerge from jail with more resistant strains of HIV because of the disruption, she said.
As for Georgia's state prisons, Spaulding said too few resources are devoted to discharge planning. HIV-positive releasees often have to wait several months to get a medical appointment in the community and can run out of medications before they see a provider, she said.
According to the latest federal statistics, from 2010, there were just over 20,000 inmates in state and federal prisons with HIV or AIDS. Those numbers don't include HIV-positive people held in jails, where turnover is high.
With jails included, Spaulding estimates more than 100,000 people infected with HIV are being released from incarceration annually in the U.S. In most jurisdictions, they could be provided with transitional case management services for less than $9,000 per person during the first year after release, according to a cost analysis that Spaulding and several colleagues completed last year.
Though HIV medication is expensive, released ex-inmates — with the right advice — usually can obtain financial assistance, notably through the federal Ryan White HIV/AIDS Program that serves people lacking adequate health care coverage of their own.
However, several experts said some HIV-positive ex-inmates were missing out on coverage in the more than 20 states that have chosen not to proceed with the expansion of Medicaid allowed under the national health care overhaul. In the other states, Medicaid is now open to single and childless adults who fall under the federal poverty line, a category that includes many ex-inmates.
Dr. Ank Nijhawan, a professor at the University of Texas Southwestern Medical Center, is engaged in HIV-related care at the Dallas County Jail — the country's seventh largest jail with an average daily population of 6,500 inmates. For those going in and out of jail, such care can be a "teachable moment" with lasting value, Nijhawan said.
"It's a unique opportunity to get things under control and show them how good they can feel when they're on their meds," she said. "You can make them feel proud of themselves."
Josiah Rich, the Brown University expert, says it's crucial that policymakers understand the importance of HIV treatment for those in prisons and jails, and those just out of them.
"If we can treat enough people, the HIV epidemic will go away," he said. "To do that, we need to treat the most challenging cases. This is where we find them."