Sara Looby, PhD, ANP-BC, FAAN

As a nurse specializing in HIV care, Sara Looby, PhD, ANP-BC, FAAN, has learned a lot from her patients about what it is like to live with a chronic disease.

One particularly memorable exchange came when talking to a man who was successfully managing his HIV with antiretroviral medication. “People tell me that I beat AIDS and I am lucky to be alive,” the man told Looby. “But look at me. I’m a monster.”

The man was referring to his lipodystrophy, a troubling condition experienced by some HIV-positive patients that manifests in an excess amount of belly fat, the thinning of the arms and the legs, and the formation of large hump on the back of the neck.

“Patients were really quite devastated by this,” recalls Looby. “And as a nurse practitioner at the time, it was difficult because there weren't a lot of answers.”

It was conversations like this that helped Looby understand that clinical care is not just about treating the disease, but understanding how patients experience the disease. Looby has used these insights to drive her career as a nurse researcher at Massachusetts General Hospital.

Now in her role as a Nurse Scientist at the Yvonne L. Munn Center for Nursing Research, an Assistant Professor of Medicine at Harvard Medical School, and a Principal Investigator in the Program of Nutritional Metabolism at Mass General, Looby is working with the community to find answers to lipodystrophy and many other questions surrounding HIV-related endocrine and cardiovascular complications.

The link between HIV-positive women and heart health

Since the introduction of antiretroviral therapy in 1996, HIV-positive individuals have been living longer lives. However, clinicians are now faced with an aging HIV-positive population that is at greater risk for chronic conditions, including heart disease. In fact, people living with HIV are 50-100% more likely to develop cardiovascular disease (including heart attack and stroke) than individuals without HIV.

Through her research efforts, Looby is investigating how HIV might influence the development of conditions such as heart disease and the increased risk for heart attacks that tend to impact HIV-positive populations at an earlier age compared to non-infected populations.

The bulk of her work has involved HIV-positive women, with a focus on understanding sex-specific mechanisms of heart disease risk, particularly menopause. “We know when non-HIV infected women enter menopause, they are at an increased risk for developing heart disease due to the loss of estrogen’s protective effects,” explains Looby.

“If an HIV-positive woman who is premenopausal has evidence of heart disease, and maybe already had a heart attack at the age of 40, what’s going to happen in her mid 50s when she loses estrogen?”

Reducing the risk of heart disease with REPRIEVE

To answer these questions, Looby is currently conducting a sub-study within a multi-site NIH R01-funded study, called the Randomized Trial to Prevent Vascular Events in HIV, otherwise known as REPRIEVE. REPRIEVE is the largest clinical trial to date focused on heart disease prevention among women and men living with HIV.

Looby is co-principal investigator, along with Markella Zanni, MD, a physician in the Mass General Neuroendocrine Clinical Center, of a separate NIH-funded study fully integrated into the REPRIEVE trial that will evaluate sex-specific mechanisms of heart disease risk, such as ovarian aging and menopause status among female subjects in REPRIEVE.

A supplemental aim of this study seeks to address the disproportionally low number of HIV-positive women enrolled in clinical trials. To address this issue, Looby and her team designed a campaign to educate and engage women with HIV about HIV-associated heart disease and the importance of clinical research participation.

To inform campaign development, Looby conducted a pilot study among women in the community. “If you want to know what works best for people in a certain illness population that you may not be a representative of, you should ask them,” says Looby.

Her team administered a survey at a community organization in Boston that serves women with or at increased risk for HIV. Participants were asked questions about barriers and facilitators to research participation, best strategies and methods for learning about a research study, and what factors help keep them engaged in a study. Looby and Zanni used the study findings to develop the Follow YOUR Heart campaign.

The power of the patient’s voice

This community-centered approach to research has been a common thread throughout Looby’s work. As a volunteer at HIV organizations throughout Massachusetts, her conversations with HIV-positive individuals in the community have significantly informed her research questions.

She also believes in the importance of sharing her research results with members of the community who wouldn’t otherwise have access to academic publications or scientific conferences. “A big part of conducting research is helping people feel valued, and letting them know that they are part of the greater good,” says Looby.

“I make it a priority to give back to the community and help them better understand or improve their care by sharing research findings from studies that they dedicated their time and blood to.”

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