Giving a Voice to the Voiceless

Catherine Grodensky, MPH; David Rosen, PhD, MD; and Steve Bradley-Bull, MEd, LCC, lead UNC's Criminal Justice and Health Working Group.

Catherine Grodensky, MPH; David Rosen, PhD, MD; and Steve Bradley-Bull, MEd, LCC, lead UNC’s Criminal Justice and Health Working Group.

Ensuring North Carolina’s inmate population is represented in research that leads to better clinical care is at the forefront of David Rosen, Catherine Grodensky, and Steve Bradley-Bull’s minds.

“The incarcerated population is invisible,” says Grodensky, MPH, Project Manager, the Prison Medicaid study. “When you review health care guidelines or attend a medical conference, you never hear about incarcerated folks. They are just not considered, and that is incredibly unjust.”

Rosen, Grodensky and Bradley-Bull co-lead UNC’s Criminal Justice and Health Working Group within the Division of Infectious Diseases. The trio recently replaced long-time leaders David Wohl, MD, Professor of Medicine in the Division of Infectious Diseases, and Cathie Fogel, PhD, RNC, Professor of Nursing. The group is an extension of the Center for AIDS Research or CFAR’s Social and Behavioral Research Core. Since 1999, UNC has contracted with the state’s prison system to provide infectious diseases care to inmates. Rosen says research studies would never have been possible without the many UNC Division of Infectious Diseases clinicians who have provided care in the prison system over the years, gaining the trust of inmates and prison staff alike.

“We think about common narratives about inmates’ behavior and health and then wonder, ‘are these accurate,’” says Rosen, PhD, MD, Research Assistant Professor of Medicine in the Division of Infectious Diseases. “About 23,000 people come into the prison system each year. The stock population of the prison system is around 36,000. Incarceration not only affects inmates. It impacts their families and the communities they return to.”

Each year since its inception, the Criminal Justice and Health Working Group has added to the body of research about prison inmates in North Carolina. Using blood samples from mandatory syphilis testing, Carol Golin, MD, Associate Professor in the Department of Health Behavior, and Wohl, were able to show the prevalence of HIV among incoming inmates in NC prisons was 1.5 percent, and more than 90 percent had been diagnosed prior to entering prison.

“Although the yield of undiagnosed cases coming into prison was lower than expected, there are about 800 people living with HIV in North Carolina’s prison system each year,” Rosen says. “Now we are focusing on research to maximize their health and wellbeing while they are incarcerated and in anticipation of their release.”

Building off of these completed studies, Rosen, Grodensky, and Bradley-Bull are now seeking answers to questions about inmates’ experiences receiving HIV care in prison and enrollment in Medicaid during incarceration and in the community.

“Since we are attempting to help society by gaining new knowledge with this research, I believe it is vitally important to sit down with these inmates to not only hear about their experiences, but to also hear about what ideas they have about improving their health and wellbeing,” says Bradley-Bull, MEd, LCC, Project Manager.

The Prison Cascade Study
Rosen is leading a study called Prison Cascade to capture the experiences of inmates living with HIV in prison.

“When you are incarcerated, you have access to free medications and transportation to your HIV clinic appointments,” Rosen says. “So if you are still not accessing HIV care in prison, what are those barriers?”

There are 56 prisons in North Carolina, but each prison does not have its own infectious diseases clinic. Thus, the majority of inmates have to travel for care, which could be one of the barriers to seeking treatment for HIV while incarcerated, Rosen says.

“We’ve learned that inmates are often told the night before or the morning of their clinic visit that they will be leaving at 4 a.m. They are shackled while traveling and are sometimes away from their base prison for a week, even though a clinic visit may be less than an hour,” Rosen says. “But on the other hand, we have heard from inmates that they like the care they are receiving at the infectious diseases clinics. As we conduct more interviews, we will get a clearer picture.”

In addition to speaking with inmates, Bradley-Bull will conduct qualitative interviews with health care providers in the clinic and outreach nurses as part of the Cascade study. Outreach nurses, who travel throughout the prison system providing limited HIV care, could be another reason inmates choose not to receive care in one of the clinics.

The Prison Medicaid Study
If inmates are enrolled in Medicaid when they are sent to prison, they lose their coverage. However, if they become ill while incarcerated and need to be sent for treatment at a community hospital, the prison system’s social workers will re-enroll them in Medicaid.

“Billing Medicaid for these community hospital stays saves the prison system $10 million a year,” Rosen says.

Rosen is leading the Prison Medicaid study, which seeks to understand inmates’ experiences with Medicaid prior to coming to prison and whether their enrollment in prison leads to continued benefits after release. Since the prison does not track inmates’ health or use of Medicaid upon their release, the researchers are hoping the Medicaid study will allow them to discover what role Medicaid plays in an inmate’s life after release.

“If Medicaid is activated while an inmate is in prison so he or she can access care at a community hospital, it remains active for one year,” Grodensky says. “If they are released from prison within that year, they still have to travel to their county’s social services office to keep it active. If they are incarcerated longer than a year after Medicaid was activated, then they would have to start the enrollment process from scratch upon release. But being enrolled in Medicaid during incarceration could increase the chances that their Medicaid application will be successful in the community.”

Qualitative interviews have been conducted with the prison system’s social workers who enroll inmates into Medicaid. Now interviews with prisoners who have recently returned from stays at community hospitals using Medicaid coverage will be done. She says the questions will focus on inmates’ experiences with Medicaid, their understanding of Medicaid, their medical history and lifestyle choices. Answers from these qualitative interviews will be used to create a survey to be given to 300 inmates.

“The Central Prison in Raleigh has a hospital that many prisoners returning from stays at community hospitals must go through before returning to their assigned prison,” Grodensky says. “We are conducting our interviews at Central Prison and we’re trying to discern if prison is a logical place to educate people about Medicaid.”

Rewarding Work
Grodensky, Rosen, and Bradley-Bull say they cannot imagine working with a different population as they feel they are giving a voice to the voiceless.

“When we conduct our qualitative interviews and hear their stories, we become that link between inmates and the community,” Grodensky says. “Their voices are not heard otherwise.”

Rosen says UNC’s Criminal Justice and Health Working Group is also hoping to secure funding to investigate other factors the can negatively impact inmates’ health in addition to HIV, including hepatitis C virus, mental health and substance abuse. They are also seeking to initiate health projects in NC’s county jails.

“The US has the highest rate of incarceration in the world. And some diseases are much more prevalent in incarcerated populations versus the general population. For example, 10-20 percent of inmates have hepatitis C virus while only 1 percent of the general population has HCV,” Rosen says. “How can we improve inmates’ health and address their healthcare needs as they re-enter the community? Conducting research in the prison system can be challenging, but with nearly all inmates returning to their communities, we see these studies as not only addressing prison health, but also public health.”