Saving Lives in Massachusetts:
Barbara McGovern and the Treatment of HIV and Hepatitis C in Prison
Barbara McGovern, MD, is one of those rare individuals who loves her job. In contrast to most people who make similar claims -- orchestra conductors, airline pilots, entrepreneurs -- Dr. McGovern's job is a bit more daunting: she provides consistent, high-quality care to people in prison who are infected with HIV and to those also infected with the hepatitis C virus. She readily shares her obvious satisfaction with caring for incarcerated people. "I hope that, even if their lives change by only 10%, if they get on the right track, that's definitely perfect," she said.
She has a surprisingly delightful modesty about her work, and a keen awareness of the team nature of effectively treating incarcerated people with these complex diseases. "It's a fabric of people," Dr. McGovern said. "From the RN to the head of the medical parts of the prisons, there's a core of people really committed to those patients." She frequently refers to her colleagues as fantastic, helpful, wonderful, phenomenal, and compassionate.
An Extraordinary Opportunity
Treating people in prison with HIV infection and hepatitis is an enormous job. Approximately 0.7% of the United States population is incarcerated. The Centers for Disease Control and Prevention, or CDC, estimates that almost two million persons were held in prisons and jails in 2001, a figure more than 70% higher than that in 1990. This unprecedented rise in the incarceration rate is related to illicit drug use. The CDC reports that 21% of state prisoners and 59% of federal prisoners were convicted of illicit drug-related crimes in 2000.
Use of illicit injectable drugs is also a risk factor for infectious diseases transmitted by blood, including HIV, hepatitis B virus, and hepatitis C. In fact, illicit injectable drug use is the major risk factor for acquiring hepatitis C, now that this virus has been virtually eradicated from blood used for transfusions in the developed world.
The large number of people in prison infected with hepatitis viruses provides an extraordinary opportunity for care and prevention that this predominantly poor population may otherwise not receive. With between 15% and 50% of people in prison infected with the hepatitis C virus, this population may account for up to a third of all people with hepatitis C in the U.S.
Healthcare in the Massachusetts Prison System
How does someone become involved with providing care to people in prison? Dr. McGovern first rotated through an inpatient lock-down unit at Lemuel Shattuck Hospital in Boston during her residency at Tufts University - New England Medical Center. She was given the opportunity to work with incarcerated patients more extensively when she took a joint appointment at Tufts-NEMC and Lemuel Shattuck Hospital in 1998.
Her current responsibilities include managing an HIV clinic one day a week at MCI-Framingham women's prison, where she sees women with HIV infection and hepatitis C coinfection. She also manages a coinfection clinic one day a week at Shattuck Hospital for incarcerated men from all over Massachusetts, who are brought to her for treatment. (Men with only hepatitis C are treated by a group of hepatologists led by Dr. Steven Drewniak at the Shattuck gastroenterology clinic.) In addition, Dr. McGovern works as an assistant professor of medicine at Tufts University School of Medicine in Boston.
Dr. McGovern is part of group of specialist consultants and full-time employees who meet the healthcare needs of a prison population of over 10,000 people at 17 sites throughout the state. The prison healthcare system is managed by the University of Massachusetts Medical School through a program called UMass Correctional Health. This program is managed by Arthur Brewer, MD, and includes 18 primary care physicians, 17 mid-level providers (nurse practitioners and physician assistants), as well as psychiatrists, social workers, and hundreds of nurses and other healthcare staff. There are also a number of specialist consultants affiliated with Shattuck Hospital who work in the prison system. In addition to Dr. McGovern, there are three other infectious disease specialists: James J. Quirk, MD, Mary Sabolsi, MD, and David R. Stone, MD.
Managing HIV and Hepatitis in Prison
Management of HIV infection is a lifelong, complex program, requiring multiple drugs and frequent monitoring for viral load, side effects, and the development of resistance. Treatment of hepatitis C, although having a fixed deadline, is a long-term proposition, with six months to a year of therapy with drugs that can have rather severe side effects. Even before treatment can be started, it can take a number of months to determine whether an infected patient should start treatment -- that is, whether or not a liver biopsy reveals advanced liver disease. This makes treating incarcerated women difficult, since women generally have shorter prison sentences than men. "Many times I will see [women], I'll advise them, and often they can get to the point of a biopsy, but they usually don't get to the point of coming to see me on a long-term basis for treatment, because the treatment takes too long and they are already gone," Dr. McGovern said.
Treating patients with both HIV infection and hepatitis C can be especially challenging, and few prison systems outside of Massachusetts systematically treat patients with both diseases. Treatment is complex and expensive, requires extensive involvement of numerous health care workers and support staff, and is fraught with complications and side effects.
Dr. McGovern and her colleagues have proven that this population, which has often been excluded from treatment, can be successfully managed with sufficient involvement and ancillary support. In a ground-breaking study published by Dr. McGovern and coworkers in Clinical Infectious Diseases in 2005, they wrote, "[S]tudies indicate that few patients coinfected with HIV and hepatitis C virus (HCV) are treated for their underlying hepatitis because of ongoing substance abuse, depression, chaotic lifestyles, homelessness, and perceived nonadherence. The structured environment of the prison system enables clinicians to provide complicated therapies for HCV to HIV-infected patients in combination with substance abuse programs."
Working as Part of a Team
The coinfection treatment program that Dr. McGovern manages grew out of the HIV treatment program previously instituted for people in Massachusetts prisons. "It was obvious that these [HIV] patients needed so much care, whether it was to see the eye doctor (to make sure they didn't have CMV retinitis), to see the liver doctor, to see the ID doctor, to see this doctor and that doctor. . . the care was so complicated, they decided it required a case manager," Dr. McGovern said. Each major prison site was assigned an HIV case manager, primarily responsible for HIV-infected patients, who coordinated all their care. The case managers also educated patients about the disease and its treatment. "They have videos on HIV, they have brochures, they spend the time talking to them about medication adherence, how important it is, [and the risk of] resistance."
The HIV program was so successful that the Massachusetts prison health system decided to use the same program and people for managing hepatitis C care. In addition to a case manager, there are also staff members who provide information about HIV and hepatitis. "We have a hepatitis C educator who goes from site to site, who talks to people who are recently diagnosed," Dr. McGovern said. "When they are going to go on therapy, she talks to them about the importance of adherence. While they're on therapy, she checks in with them to see how they're doing." A very important part of the role of the educator is to reinforce the importance of adherence to treatment, so that the patients take all their medicine when they are supposed to do so. It has been shown that taking all the prescribed hepatitis C medicine, especially during the first six months of therapy, has an enormous impact on whether the disease can be cured.
Hepatitis C therapy, specifically interferon compounds such as peginterferon, are associated with significant psychiatric side effects, such as depression, difficulty sleeping, and irritability. Patients who have used illicit drugs appear to be more sensitive to these effects, and there is a very high incidence of mental illness and drug abuse among people in prison. According to Dr. McGovern, the high-quality psychiatric support provided by Dr. Jorge Velez at MCI-Framingham and the other psychiatrists there and at Shattuck Hospital gives her confidence that these patients can receive optimal treatment, with rapid and effective control of any serious side effects that emerge. "When I have a patient that I'm worried about, I just get on the phone, call someone, and I've had people seen the same day," she said. In addition to psychiatrists, the prison system also has therapists expert in managing patients with substance abuse issues, as well as anger management classes, which both Dr. McGovern and her patients believe is very important.
A key part of this program is the involvement of the prison nurses in monitoring patients for problems with treatment. "The nurses who give the weekly [peginterferon] injections ask the patients before they give the injections, 'Are you having a lot of side effects?'" The nurses review a side-effect profile with every patient, and any serious side effects prompt a call to the physician. "It's a fail-safe thing in a way, because every time they get an injection they're having this -- interrogation [laughter] -- about side effects."
One of Dr. McGovern's most endearing traits is her generous praise of others, from the psychiatrists, hepatitis specialists, nurses, educators, prison administrators, and especially the patients themselves. Not that she wears blinders, or avoids the distressing or distasteful aspects of prison medicine. "I won't deny that sometimes I get very frustrated there. For example, I have a patient examination table that's been broken for months. When's it going to get fixed? That wouldn't happen in a private practice setting."
Dr. McGovern also recognizes that the prison medicine budget is very constrained. "It doesn't cover all the people who could be treated," she said. Therefore, those with the most serious liver disease are treated first. "There is a reshuffling based on liver disease, and we have no better way of doing this because we have a defined budget." Even so, she shared how a prison administrator recently called to let her know that funding for hepatitis C treatment had been increased. "He was happy! He wanted to share the news with me. Even the Department of Corrections people. . . his heart is in the right place. . . he wants things always to be done the right way."
"Positive Things Can Happen in Prison"
Dr. McGovern manages to emphasize the positive in most aspects of providing care to these otherwise marginalized people. Her upbeat approach and enthusiasm for providing care is reflected in the way she talks about her patients, some of whom initially put up many hurdles. She sees that "some very positive things can happen in prison." For women who are in prison for a long period of time who receive the "right things" -- good psychiatric care, good medical care, frequent communication with the case manager -- there can be positive connections with people, and potentially these patients can turn around their lives.
"There's a lot of satisfaction when you see women who are basically wasted, look horrible, their lives are a mess. . . you don't have to use a great amount of imagination to understand why these women just recreate this horrible, vicious cycle," Dr. McGovern said. "It's a cycle you hope somehow you can help break in some way. Most of these women come from unstable households. They learn drug use at home, they've had terrible psychiatric issues -- depression, suicide attempts, post-traumatic stress disorder. Obviously, when I'm meeting them, they now have medical complexity, in terms of HIV and hepatitis C. When they're in prison, if they get the right care, beyond just medical care -- the psychiatric care, the anger management classes, things like that -- that becomes a comprehensive care program."
Dr. McGovern continued, "I can remember many women I have met over time who, when I first met them -- if someone was in the office with me, they would probably wonder how could you possibly work with this patient population. People who are nasty, horrible on the first interaction," she said. However, rather than responding reflexively, she instead brings her understanding of what is happening in her patients' lives at that point. "What I've learned is that some of that is just withdrawing from drugs, anger about being in prison, their life is out of control. I've learned that if the first interaction is like that, just to say that 'Today just doesn't seem like the right day to continue talking. Why don't we reschedule another time?' And I let them go. Instead of responding to their anger with anger, yelling at them for how they're treating me, I just let them go."
This understanding approach has allowed her to reach many of these people. "It has never failed that they come back for the second visit and apologize for their behavior on the first. They know they were out of control, they were inappropriate. They apologize, and I just say, 'That's fine, let's just move on.' Because I don't want to make a thing out of it. 'Let's just move on and take care of you.'"
She recalled one woman who was very difficult to reach. "I thought I was going to pull my hair out! If I said black, she said white. Whatever I said, she did the opposite. She would say to me, 'I don't care!' in Spanish -- I've learned that in Spanish, I've heard it so often."
Dr. McGovern persisted with this patient, even though it took eight months of "knocking heads." "When she finally brought herself into her own medical care, it was a transformation. She was fun to take care of, she became one of my model patients. She took every single dose of every single medicine. She went on HIV therapy with complete viral load suppression. She went on hepatitis C therapy with complete viral load suppression. She did marvelously well," she said.
But the greatest reward to Dr. McGovern came when this woman was leaving prison. "Through an interpreter, she told me that I had saved her life. . . . She was my worst case of someone who was very hard to reach, but then, over the course of time, she really came around." This patient was not alone in this belief. "I've had people tell me that prison saved their life, and they mean it, and I agree with them. They were basically on the street, wasting away. Incarceration is not a great way to treat drug addiction, but in some patients, it can be a real wake-up call -- it's time to turn around."
In addition, Dr. McGovern sees benefits beyond controlling diseases when her patients follow treatment and their health improves. "When they get to a nondetectable HIV viral load, it means more than adherence, it means they actually have some self esteem."
Even when her patients do not maintain the benefits they achieved while in prison, Dr. McGovern finds something positive in the situation, so that they can get back on track. "I certainly see our share of recidivism. . . when I see them, they are just so ashamed to be back there, they sound so sorry. . . Let's say the first time they left without a program. I say, 'Well, we just learned you can't do it on your own. So, happy insight to know that you learned something from it. So let's plan on a program next time.'"
Making Use of the CDC Guidelines
In January 2003, the CDC issued a 33-page report, in their MMWR Recommendations and Reports series, on addressing hepatitis viruses in prison. To determine who should be tested and treated, the CDC recommends that all people in prison should be questioned regarding risk factors for hepatitis C. These factors include injection of illicit drugs, long-term hemodialysis, transfusion of blood or blood products before July 1992 or receipt of clotting factor concentrate before 1987, or evidence of liver disease. Those with a risk factor should be tested for antibodies to hepatitis C, and those positive should be evaluated for chronic infection and liver disease, and treatment should be considered. According to Dr. McGovern, the Massachusetts prison system uses risk factor screening for determining who should be tested, rather than the previous approach of only testing people with abnormal liver function results or those with frank liver disease.
A key component of the CDC's recommendations for treating hepatitis in prison is to provide vaccinations against hepatitis A and hepatitis B. People with hepatitis C will have much more serious liver disease if they become infected with hepatitis A or B viruses. However, this recommendation is not yet universally followed in prisons. For example, a study by the CDC published in October 2005 found that hepatitis B virus transmission had continued despite evidence of widespread hepatitis B virus infection in the facility. More than a fifth of the patients at a state prison had evidence of hepatitis B infection when they were screened in June 2000, but 3.6% of those who had not been infected during the earlier testing -- that is, those who were still susceptible -- had become positive for hepatitis B infection one year later. This study provides concrete evidence of the need for hepatitis B vaccination in prisons and jails.
Fortunately, the Massachusetts prison system offers hepatitis A and B vaccination to all patients with hepatitis C and to all those who have injected illicit drugs. "They're very good at doing immunizations," Dr. McGovern said. "Incarceration is an opportunity to immunize, and [to teach] harm reduction, and to treat those who need treatment."
Another area of her work has been treating acute hepatitis C in people in prison who did not spontaneously clear the virus, as recommended by the American Association for the Study of Liver Diseases. Treatment with peginterferons in these patients has been shown to be highly successful, and Dr. McGovern and her colleagues have submitted a study of their success with 21 such patients, all but one of whom became infected through sharing needles. (The other patient was exposed through a bloody fist fight.) The paper is due to be published in Clinical Infectious Diseases in 2006.
They also used the acute hepatitis C study as an opportunity for education. "We talk to them about their risks, we talk to them about harm reduction. We test them for HIV, hepatitis A, hepatitis B. If they're negative for [the hepatitis viruses], we immunize for hepatitis A and B. We talk to them about how even if they clear hepatitis C, that they will get reexposed if they share needles again."
Going Beyond Prison
With Dr. McGovern and other specialists working with the correctional system, the care doesn't stop at the prison gates. "If they have HIV, and I'm seeing them in my Thursday clinic [that is, at MCI-Framingham], those patients do have an option to follow up with me if they're going to live in a geographic area near me. As a matter of fact, I saw a couple today who were former prisoners who were seeing me as outpatients at this point."
Dr. McGovern sees definite benefits to this continuation of care. "I think it really matters, because when they get attached to doctors, we just see much better follow up, obviously, because we really help them accomplish a lot of the goals. And it really helps for continuity of care. When I've seen them, I've already gotten to know them in the prison, and I don't have to get to know them again when they get out."
Dr. McGovern takes great joy in the success of her patients. "I had a male patient who was in prison, got out, and saw me as a community patient. I had another female patient who did the same, they met in my waiting room, and they got married! And I sang at their wedding!"
About the Author
Harry Goldhagen is the editor of Angels in Medicine.
The artwork at the start of this article, Woman in Teal, was sketched by Tammy Williams, while she was incarcerated in a Federal Prison Camp, Alderson, West Virginia. It was offered for sale as part of an arts and crafts show sponsored by The Prisons Foundation entitled "Christmas in Prison" at the First Trinity Lutheran Church in downtown Washington, DC in December 2004. Tammy wrote, "I am 30 years old...and I have two beautiful daughters.... My artwork helps give me the peace necessary to serve my sentence...I have never had any formal [art] training...My goal is to return to college..."
About Angels in Medicine
Angels in Medicine is a volunteer site dedicated to the humanitarians, heroes, angels, and bodhisattvas of medicine. The site features physicians, nurses, physician assistants and other healthcare workers and volunteers who reach people without the resources or opportunities for quality care, such as teens, the poor, the incarcerated, the elderly, or those living in poor or war-torn regions. Read their stories at www.medangel.org.