One could say that Larissa Avilés-Santa, M.D., has a photographer’s eye for detail. (Okay, she is a photographer, but more about that later.) Ever since she was a child growing up in Puerto Rico, she looked at things from a different angle, and was often moved by what others were not.
“When I opened that fifth grade human anatomy atlas, I immediately fell in love with the human body,” Avilés-Santa recalls. “That sparked my curiosity about human health, and my interest never faded.” Then in high school, she remembers reading the novels of Dr. Manuel Zeno Gandía, a Puerto Rican physician known for his sociological writings, and she was inspired to think about how health and social conditions influence each other.
Fast forward a few decades and those interests in both the human body and sociology—interests she has aggressively cultivated—turned out to be the perfect combination for Avilés-Santa’s current role: as director of a groundbreaking study on the health of Hispanic people—the largest, youngest, and fastest-growing minority group in the United States.
Now in its 10th year, the Hispanic Community Health Study/Study of Latinos (HCHS-SOL)has been gathering critical data that Avilés-Santa hopes will ultimately lead to strategies that can minimize the underlying causes of chronic diseases such as asthma and diabetes that often burden this community. The study is funded by the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
The study aims a special lens at cardiovascular disease (CVD), which is one of the leading causes of death among Hispanics. Little by little, it is unearthing much-needed information about the prevalence of common heart disease risk factors such as high blood pressure, high cholesterol, obesity, diabetes, and smoking. And it is examining that data not by looking at Hispanics as a homogenous group but as a composite of highly diverse cultures and ancestries.
That, says Avilés-Santa, is unique—and important.
“In order to understand the health of Hispanics/Latinos, it is critical that we consider that in addition to ancestral differences, culture may manifest differently among Hispanics/Latino heritage groups,” she says. “The importance of acknowledging diversity is fundamental to getting accurate information and determining how similar or different we are. That way we may develop better and more tailored strategies to treat and prevent diseases.”
“It’s an approach,” she adds, “that will benefit everyone.”
In its first phase, the HCHS-SOL enrolled over 16,000 adults from four U.S. communities with large Latino populations, including the Bronx, Chicago, Miami, and San Diego. Participants self-identified with different heritage groups, including Cuban, Dominican, Mexican, Central American, South American, and Puerto Rican. They underwent a baseline health examination between 2008 and 2011, and have been followed annually. A second examination started in October 2014, and researchers project that it will be completed in September 2017.
It was the findings in that baseline examination, though, that provided a wake-up call for anybody thinking about population health. They revealed many things, but mainly just how vulnerable the Hispanic/Latino population is to heart disease—71 percent of Hispanic women and 80 percent of men have at least one risk factor, for example. But the study has also found that those risk factors vary by heritage group.
The SOL study continues to gather data that could further explain whether the differences in risk factors result in differences in the onset of CVD. “It sets a foundation to describe and understand the health of the contemporary U.S. Hispanic populations,” says Avilés-Santa. And she should know. In addition to being project director of SOL, Avilés-Santa is also a medical officer in the Division of Cardiovascular Sciences at the NHLBI.
It is perhaps no wonder that while September 15 through October 15 is recognized as Hispanic Heritage Month, health advocacy has become a year-round mission for Avilés-Santa. She has always been passionate about improving the lives of others, particularly medically underserved populations. Her interest in understanding and improving the health of Hispanics through research inspired her to create the first NIH Hispanic Health Research Scientific Interest Group (SIG), which was officially established in the summer of 2015. This SIG meets monthly to discuss scientific and research topics relevant to Hispanic health.
But the path to this current work was long, hard, and focused. Avilés-Santa earned her medical degree from the University of Puerto Rico and completed her residency training in internal medicine at University Hospital in San Juan. She then moved to Texas to pursue a fellowship in endocrinology at the University of Texas Southwestern Medical Center. She says she chose UT Southwestern because she wanted a high-quality experience in clinical research. During her fellowship, she did clinical research on Type 1 and Type 2 diabetes mellitus and had the opportunity to explore her own research interests in the prevention of heart disease in Hispanics with Type 2 diabetes.
The latter had always been of special interest to her, she says, particularly after observing high rates of diabetes in patients with heart disease in Puerto Rico, and in her young Mexican and Central American patients in Texas. In fact, she says, it was from these interactions with patients from different Hispanic/Latino heritage groups that she became more aware of health-related differences across Hispanic/Latino cultures—and the importance of tailored education and interventions to address these differences. Inspired to know more, she pursued a degree in public health, a field she believed would connect her with the community in a meaningful and impactful way.
In 2006, the NIH chose Avilés-Santa to lead the SOL study, and over the years she says she’s only become more motivated by the work. Her next challenge: to identify strategies that can help solve some of the underlying problems that are producing some of the more dire health statistics. Last July she organized, with the assistance of NIH colleagues, a workshop on personalized medicine and Hispanic health in an effort to glean even new insights.
For now, though, Avilés-Santa says she’s reveling in the humbling experience of leading the SOL study. Not only has it helped open doors to others who are thinking big about these issues, it has made it more possible for her to mentor early career investigators, collaborate with other researchers across multiple disciplines, and advise the many who are working “in the trenches”—all the things she loves.
Most of all, though, she says the experience has given her hope.
“The participation of Hispanic men and women in research will shed much-needed light on understanding the development of chronic diseases and hopefully how to prevent them,” Avilés-Santa says. As a result, she adds, “their participation will impact their immediate circle and generations to come.”
Much as her research takes a snapshot of Hispanic health, Avilés-Santa also enjoys her cameras.
“I carry them almost everywhere I go,” she says. “I do black and white film photography, and develop my film and prints. I also work on digital media.”
And the objects of her gaze? “I enjoy a wide range of scenes, shapes, faces, composition,” she says. “I like the scene to speak to me before I get the shot. It’s my joy.”
For a woman who’s on a mission to capture a detailed picture of Hispanic/Latino health in America, one might say it’s a fitting hobby.