Making Health Care for the Most Marginalized a Priority

Long before the current pandemic brought renewed attention to health inequities, Madina Agénor was researching how social inequalities, including racism and anti-LGBTQ+ discrimination, affect people’s health—and what can be done to help all people thrive.

Agénor joined the Department of Community Health in the School of Arts and Sciences in 2018. A social epidemiologist, she examines how societal factors shape health outcomes among marginalized social groups. Specifically, her research examines how social inequities related to race/ethnicity, sexual orientation, and gender identity alone and together influence people’s access to life-saving services—especially in the areas of sexual and reproductive health and cancer prevention and control.

Guided by a concern for understanding how social context shapes the health of marginalized populations, she has paid particularly close attention to how patient-provider interactions, discrimination in the health-care system, and laws and policies shape poor health outcomes among Black women and other women of color; lesbian, bisexual, and queer women; and transgender and gender-diverse people.

“By focusing specifically on LGBTQ+ people of color in particular, I can see how sexism, racism, heterosexism, and transphobia intermingle to shape their unique health and health-care experiences, and that the distribution of health and health care outcomes looks different among LGBTQ+ people of color compared to their white counterparts,” she said.

“If we are to advance the health of the entire LGBTQ+ community, we need to take seriously that different subsets of the population have different experiences and need different interventions that center their unique needs,” she added.

Agénor is the inaugural Gerald R. Gill Assistant Professor of Race, Culture, and Society. Gill was a beloved and influential history professor who taught at Tufts from 1980 until his death in 2007.

“Professor Gill opened the eyes of hundreds if not thousands of Tufts students to African-American history and the struggles that continue today,” said Billy Jacobson, A90, who helped rally alumni financial support for the endowed professorship. “He did so with humor, warmth, and, of course, with a peerless knowledge of his subject matter. Professor Gill also served as an advisor, both formal and informal, to so many students. The impact that he had on me is felt to this day in deeply personal ways.”

Agénor’s career is similarly grounded in empathy and committed to advancing equity. She earned a bachelor’s degree at Brown University, a Master of Public Health at Columbia University Mailman School of Public Health and a Doctor of Science degree at Harvard T.H. Chan School of Public Health. She has also completed postdoctoral research training in cancer prevention as part of the Harvard Educational Program in Cancer Prevention and has held a Visiting Faculty Fellowship at the Center for Interdisciplinary Research on AIDS at Yale.

She joined Tufts from Harvard T.H. Chan School of Public Health, where she was assistant professor of social and behavioral sciences. In addition to her teaching and mentoring of community health students, she is adjunct faculty in the Department of Obstetrics and Gynecology at the Tufts School of Medicine, where she mentors medical students and residents in research. She is also director of the Sexual Health and Reproductive Experiences (SHARE) Lab, a research group involving undergraduate and graduate students as well as faculty collaborators committed to advancing equity in sexual and reproductive health.

Agénor recently spoke with Tufts Now about how her work embodies a vision for better health for all.

Tufts Now: COVID-19 crisis brought to the fore pervasive health disparities, underscoring long-standing inequities that especially affect people of color. Do you see this as a pivotal moment for your work?

As a social epidemiologist, I’ve committed my entire career to examining health inequities and their social determinants. Social epidemiology—an interdisciplinary field that connects the dots between social and health inequalities—is not new. But today, our voices are magnified by the current context and urgency of COVID-19 and the various media channels that have shown increased interest in the topics we work on. It is increasingly clear that we have a lot to offer this particular moment.

What makes social epidemiology a particularly effective approach to understanding these pervasive health disparities?

My work is grounded in intersectionality, an analytical framework developed by Black feminists that came long before me. Intersectionality, a term coined by legal scholar Kimberlé Crenshaw, comes from the work of pioneers like Sojourner Truth, Harriet Tubman, Mary Church Terrell, Barbara Smith, Audre Lorde, Angela Davis, bell hooks, and many others who tacked multiple forms of social inequality simultaneously in their work.

Using an intersectional lens allows me to examine how sexism, heterosexism, racism, and transphobia, among others, all contribute to distinctive health and health-care experiences for multiply marginalized groups such as Black LGBTQ+ people. I think people are realizing today that there are no quick fixes; we need to bring a big-picture approach to solve anything as complex as the social, economic, and health inequities that have existed for centuries, and that COVID-19 has brought to the forefront of our public discourse this past year.

In recent years, much research has been focused on equity for lesbian, gay, bisexual, transgender, and queer (LGBTQ) people. What questions interest you regarding the LGBTQ+ community?

I am particularly interested in how bias, stigma, and discrimination undermine access to and utilization of sexual and reproductive health and cancer screening and prevention services among sexual minority women and transgender and gender diverse people of color.

If you look at the literature from maybe 10 or 15 years ago, most of the research tended to focus on white LGBTQ+ populations, and you had a majority of studies that were largely conducted among white, college-educated samples of LGBTQ+ people.

By focusing specifically on LGBTQ+ people of color, I can see how sexism, racism, heterosexism, and transphobia intermingle to shape their unique health and health care experiences, and that the distribution of health and health-care outcomes looks different among LGBTQ+ people of color compared to their white counterparts.

If we are to advance the health of the entire LGBTQ+ community, we need to take seriously that different subsets of the population have different experiences and need different interventions that center their unique needs.

What are the some of the consequences of not having equitable access to care?

One example of what’s at risk involves research I’m conducting now with support from the National Cancer Institute. I’m looking at how provider- and policy-level factors such as health-care provider decision making and state Medicaid expansions influence sexual orientation and racial/ethnic disparities in human papillomavirus (HPV) vaccination and Pap testing among women in the U.S.

HPV vaccines and Pap tests help prevent cervical cancer, so if lesbian and bisexual women and women of color are not given fair access to that preventive care, then the risk of missing cancer at its earliest stage will be greater, and cervical cancer will ultimately be more fatal in these underserved groups.

How did you get started on this career path?

I first wanted to be a pediatrician. When I was a child living in Haiti, I remember seeing kids who were looking for food. I was four or five and wondering: “I have food. Why don’t they?” My father and my grandfather were really involved in issues of social justice and equity. My grandfather used to work on issues of food and agriculture, with a focus on addressing hunger and food insecurity. I think of him as someone who really did all he could to make a positive change. He motivates me to continue that legacy and way of living in the world.

Academically, I started off being premed in college. While completing my requirements, I took a microbiology course where the professor mentioned public health and talked about how this was an approach that could save the lives of thousands and thousands of people at once, as opposed to one patient at a time. I remember being struck by that and thinking, “Oh, so there are ways that we can intervene at the environmental level or at the societal level and that can really benefit large groups of people? Count me in.”

Is access to health care what you would call a universal right?

Yes, health care—and health—are fundamental rights of every human being. Each and every person has the right to live a life of meaning and well-being across the lifespan. That’s really what I want. To me that means centering the most marginalized among us, those who are not getting their fair share or a fair shot. If you can start from there, it benefits everybody in the long term.

In the largest sense of impact, it’s about connecting social justice to a healthy society.

Yes, absolutely. You can’t have a healthy and just society if you have groups of people that are unhealthy and suffering and dying disproportionately. Think about how much better the world could be if everybody was healthy and able to contribute to the world in the ways they find meaningful. It’s robbing people of the opportunity to really share their gifts with the world if they are sick or dying. I think the world would be a better place if we could all share the gifts that we all have.

These are formidable challenges, but obviously you see them as not unsurmountable. What gives you encouragement?

I find hope in people who are creating new ways and new institutions and new organizations. I am encouraged, for instance, by the rise of new institutions that, from the get-go, intentionally center the experiences of marginalized groups and, from there, build approaches that take people’s needs seriously and treat them like full humans.

Organizations like Boston GLASS in Jamaica Plain, for instance, center the needs of LGBTQ+ youth of color and address their multilevel social and health needs—again, intersectionality. Then you have Nashira Baril and her team who are creating a birth center in Boston to specifically address the birth needs of marginalized people at its core. These kinds of shifts in health care and community resources keep me optimistic.

Looking ahead, what might top your list of change you’d like to see in the next few years? 

Change is difficult. I’m currently reading David Blight’s biography of Frederick Douglass. In the last few years, I’ve read a lot of history books on amazing people who were activists for social change.

I’ve learned two things. One, there’s nothing new under the sun. It’s the same stuff over and over and over again. The initial injustices that were perpetuated—slavery, genocide—they keep persistently morphing into new systems, institutions, and practices, because the root of the problem has not been addressed. Some of the things that we talk about now, Frederick Douglass was saying in the 1840s.

With that said, change is also all about daily work being carried forward by each new generation. In every generation there are people and communities resisting and fighting for justice and equity and showing us that there are really effective strategies that we can use.

What are those strategies?

The strategies that seem to really stand out to me, that have the most potential to drive change, are community centered and community led. We’ve seen that this summer with the protests against structural racism and for racial justice and equity.

The social movements that are led by the people who are the most impacted by inequality and the most marginalized are the ones that really get us close to making a difference and to resisting injustice.

So I find a lot of hope in knowing also that there are generations and generations of people before me who have fought for equity and justice for Black and other marginalized people and millions of people today who continue this fight. I also find hope in those who are doing daily what they can, where they can; they are proof that small, sustained actions matter just as much as big actions.

What does it mean to be here at Tufts and to hold the inaugural Gerald Gill professorship?

Coming to Tufts has allowed me to develop relationships with and learn from students who are really starting to think about social and health inequities. They’re at the start of their careers; they have a fresh view of the world, a future that’s wide open to them, and they’re really excited about making a difference.

They’re less entrenched in routine ways of thinking about things, and so they offer fresh perspectives on persistent problems and bold ideas on how to address them, which has been really exciting for me.

They’re also quick to raise questions that the field has maybe not thoroughly asked before or addressed yet, which keeps my work interesting. Tufts, also, is a very collaborative place, and collaboration across disciplines, sectors, and fields is central to public health research and practice, so that’s been a great opportunity as well.

Many people have told me about Professor Gill—his spirit and his amazing ability to connect, how phenomenal he was as a teacher, thinker, mentor, friend, and colleague. One of my students this semester told me her father had him as a teacher. Her father asked that she pass along to me how glad he was that his daughter was taking my class.

People clearly loved Professor Gill and remember him as an inspiring teacher and person. So much so that they were moved to establish a professorship in his name. It’s an honor to be the first to hold it, and I hope I’m able to fulfill even a fraction of his legacy and what he meant to Tufts.

Laura Ferguson can be reached at laura.ferguson@tufts.edu.