Investigator Supports Underrepresented and Marginalized People Living with HIV to Overcome Barriers

Sep 28, 2016

Shobha Swaminathan, MD is an Investigator and Associate Professor of Medicine at our Rutgers University New Jersey Medical School Clinical Research Site in Newark, New Jersey. She has worked as an infectious disease doctor for nearly 15 years and finds that she often feels like a detective trying to diagnose a rare or interesting medical condition that has eluded others. Dr. Swaminathan believes that as an infectious disease doctor, she is in a unique position to help people living with HIV make the transition from being depressed and scared following a new HIV diagnosis to engaging them in the treatment process. Over the years, she has found that this approach not only gives her patients hope for the future, it also helps them to succeed in society.

“The HIV population that I typically work with is often marginalized from the general public either due to their HIV diagnosis, sexual or gender orientation or co-existent mental health and substance abuse issues,” said Dr. Swaminathan. “I believe that infectious disease doctors need to be fervent advocates for our patients and study participants since we are in the unique position to witness how barriers in healthcare and social systems can adversely impact their health and thereby also impact the community as a whole.”

Newark, New Jersey has high rates of HIV, particularly in populations that are disproportionately affected by the disease. More specifically, HIV-positive women account for approximately 45% of the patients Dr. Swaminathan treats; much higher than many other clinics in the United States. In addition, most of her female patients and study participants are Black or Hispanic and face a multitude of challenges including abuse (physical and sexual), poverty with unstable access to food and housing, and high rates of mental health disorders, as well as  drug and alcohol addiction.

“The definition of the word ‘service’ takes on significant meaning when you work with underrepresented and marginalized patients and study participants,” said Dr. Swaminathan. “It is important for me to ‘meet them where they are’ by assisting them in navigating healthcare and social systems to help them overcome barriers so they can become productive members of our society.”

Dr. Swaminathan also works diligently to assist her patients in achieving HIV viral load suppression (undetectable viral loads). The CDC estimates that only about 30% of people living with HIV in the United States have effective HIV viral load suppression. She attributes this to the fact that at each point in the HIV Care Continuum Cascade patients are lost.

Dr. Swaminathan suggests underrepresented and marginalized individuals should:

Dr. Swaminathan notes that the ACTG Network and the scientific community at large has done a very good job ensuring we have many medications available to safely and effectively treat HIV, including several “one pill a day” regimens. However, she feels that now is the time to take a closer look at alternative ways to help patients at each step on the HIV Care Continuum Cascade with the ultimate goal of all people living with HIV being virally suppressed.

“The ACTG Network has already started examining alternative treatment methods. We are currently studying the safety and efficacy of newer long acting injectables  that can be given at long intervals (2 months apart or longer), as well as combining ART with HIV neutralizing antibodies, and possibly considering implantable sustained release devices,” said Dr. Swaminathan. “These alternative strategies may potentially make it easier to treat hard to reach underrepresented and marginalized populations both in the United States and in international settings.”

In the future, Dr. Swaminathan believes we will continue to see the simplification of regimens with regards to dosing. In addition, she hopes there will be more studies to help identify antiretroviral therapies and other treatment modalities that provide improved long-term outcomes on conditions such as HIV associated neurocognitive dysfunction (HAND), cardiovascular disease, and metabolic complications. She also strongly believes it essential that study populations in all ACTG Network clinical trials are reflective of those affected by HIV, especially as it pertains to the representation of women and minorities. Therefore, it is important to continue expanding outreach and education efforts to reach out to communities of color so their concerns and needs can be effectively addressed.

In closing, Dr. Swaminathan has an important message to our study participants:

“I first and foremost want to acknowledge and thank all the ACTG Network study participants who have enrolled in clinical trials over the decades and have truly been the reason we have been able to move the scientific agenda to where it is today. Their generosity with their time, commitment to research, and their truly altruistic actions has helped to get us here. I promise to continue to partner with our HIV community to help them live longer, fuller lives with fewer complications and ultimately help find a cure for this disease.”