Two young men are walking side by side down a city street. Suddenly, one of them stops, staggers a few steps and collapses onto the sidewalk. His companion rushes over to help, an unmistakable look of panic on his face.
It’s a dramatic scene, one that would not be entirely out of place on a televised drama. But in a way, that’s exactly the point.
The scene comes from Spanish language telenovela called “Tiempos De Cambio (Times of Change),” which was created by a Massachusetts General Hospital research team led by Julie Levison, MD, MPH, MPhil, FACP.
The intentionally dramatic video is designed to illustrate a pressing health care issue in the Latino immigrant community—the health struggles of HIV-positive patients who are inconsistently attending their HIV primary care appointments.
Levison is a clinician-investigator in the Division of General Internal Medicine at Mass General, an Assistant Professor of Medicine at Harvard Medical School, and a bi-lingual (Spanish-English) infectious disease physician at MGH Chelsea HealthCare Center.
Her project is supported in part by a Claflin Distinguished Scholar Award, part of a program launched by Mass General to support women scientists in maintaining their research programs while starting a family.
Additional funding comes from a K23 award (a career development award for patient-oriented research) from the National institutes of Mental Health.
In a recent interview, Levison explained that while great strides have been made in the clinical treatment of HIV over the past three decades—the disease can effectively be managed with a single antiretroviral pill—only 30 percent of the U.S. HIV patient population is currently meeting the standards for clinical care.
Her video is part of a research project that is designed to improve care and treatment outcomes in one subset of the HIV patient population—migrants from Puerto Rico and Latin America.
Latino immigrants face a number of barriers in accessing healthcare in the United States, Levison says, including a lack of insurance or employment, uncertainty about their financial situation, or that they have more pressing immediate needs—such as securing food and shelter—that come before medical care.
“They may not understand English, they may not know how to use public transportation, they may be fearful of institutions and authority for very good reasons, and even fearful of physicians due to the involvement of the health care profession in human rights abuses in their home countries,” she adds.
When it comes to seeking HIV care, the barriers become even more daunting.
Levison says that in the Latino community, an HIV-positive diagnosis comes with a tremendous amount of shame and stigma. Many patients don’t tell anyone about their status and are afraid to attend doctor’s appointments for fear that someone from the community will recognize them and the news will go public.
The video created by Levison and her team is designed to acknowledge those challenges, and illustrate the drawbacks of letting HIV care lapse as well as the benefits of keeping up with treatment.
The use of dramatic storytelling techniques has proven to be an effective way to communicate public health messages in the Latino community, but this is the first time that the technique has been used to promote discussion on Latinos living with HIV.
The storyline was developed in partnership with a community advisory board comprised of Latino immigrants with HIV. The board members provided provided valuable first-hand feedback on the challenges of living with an HIV-positive diagnosis in the Latino immigrant community.
“We found the video, and the story in general, provided participants with the ability to open up about stories they’ve been holding on to for decades,” Levison says.
The video will be used during interventions between community health workers and HIV positive patients who have lasted on their care. The effectiveness of the strategy will be assessed by tracking the clinical outcomes of patients following the intervention, particularly how well they attend care appointments and by measuring the viral load of HIV in their blood.
Although these interventions will be taking place in the communities around Boston, Levison believes that the work is in reality a form of global health, given the intricate connections that many immigrants still have to their home countries, and the significant challenges they face in accessing care here in the United States.
The project has also been a reminder that there’s no one-size-fits-all approach to delivering healthcare.
“In medical school we often get one set of tools for dealing with clinical problems, but they aren’t always the right tools for a diversity of patients,” she says. “There are some patients who require out-of-the box thinking from the way our health care system is set up, so we need to think creatively.”
Brian Burns 