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A dramatic video illustrating the consequences of letting HIV care lapse is being tested as a public health intervention in the Latino immigrant community.
Two young men are walking side by side down a city street. Suddenly, one of the men stops, staggers a few steps and then collapses onto the sidewalk. His companion rushes over to help, an unmistakable look of panic and concern on his face.
It’s a dramatic scene, one that would not be 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.
Julie Levison, MD, MPH, MPhil, FACP
The intentionally dramatic video, or telenovela, 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 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 from the National institutes of Mental Health. The K23 is a career development award for patient-oriented research.
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 designed to improve outcomes in one subset of the HIV patient population—migrants from Puerto Rico and Latin America.
Latino immigrants face a number of barriers when it comes to accessing healthcare in the United States, Levison said. This includes a lack of insurance or employment, uncertainty about their financial situation, or the fact that there may be other more pressing needs—such as securing food and shelter—that can come before seeking 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.”
When it comes to seeking HIV care, the barriers become even more daunting. Levison explained 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 diagnosis and are afraid to attend doctor’s appointments for fear that someone from the community will recognize them and their status will become public.
The video created by Levison and her team is designed to acknowledge those challenges, and illustrate both the drawbacks of not keeping up on care and the benefits of taking a more active role in managing the disease. 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 it has been used to promote discussion on Latinos living with HIV.
The storyline for the video was developed in partnership with a community advisory board comprised of Latino immigrants with HIV, who provided valuable first-hand feedback on the challenges of living with an HIV positive diagnosis. “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.”
The completed video will be used as part of a one-on-one intervention between a community health worker and a patient who has lapsed on their HIV care. The effectiveness of the intervention will be assessed by monitoring the clinical outcomes of patients afterwards, particularly how well they attend care appointments and the levels of viral load in their blood as measured through blood tests.
Although these interventions will be taking place in the communities around Boston, Levison believes that the work is 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. For her, the project has 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. 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.”
Dr. Levison’s telenovela video project is supported in part by a Clalfin Distinguished Scholar Award that she received from Massachusetts General Hospital in 2016.
Named after Jane Claflin, a longtime Mass General volunteer, activist and honorary trustee, the Claflin Awards were established in 1997 to provide financial support for women researchers of childbearing age to help them sustain their science careers while starting a family.
Jane Claflin, honorary Mass General trustee and namesake of the Claflin Awards
Levison said that the Claflin funds ($50,000 per year for two years) enabled her to hire full-time bilingual clinical research coordinator, who played a key role in bringing the project to the Latino immigrant community. “She has been one of the huge reasons why this story has been a success, because people have connected with her.”
The additional support also gave Levison more time to spend with her family outside of regular work hours. “Things you might otherwise be doing on nights and weekends to make your research go, you now have support for that and can also be around for your family at this critical period. So I found that to be incredible. It’s good to see Mass General out front in providing awards like that.”
Since the inception of the Claflin Awards in 1997, over 100 women scientists have received funding through the program, which is managed by ECOR in conjunction with the Office for Women’s Careers.
In addition to the financial support provided by the award, Levison appreciates the sense of community that has developed between current and former Claflin award winners. Any new applicants for the award can have their application pre-read by a former Claflin winner to get feedback before submitting.
“It cultivates a general spirit of peer mentorship, which is very important.”
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