Elon co-hosts forum on HIV/AIDS research questions
As a growing number of children born with the viruses survive into adulthood, advocates are not always sure how to handle reproductive questions.
Newborns born with the HIV/AIDS virus once had little chance of surviving past adolescence. With recent advances in treatment, more teenagers than ever are thriving, and infected young adults now confront the question of whether to start families of their own.
Medical practitioners and social workers also find themselves in the unusual position of navigating those waters with their patients. Conversations once thought unlikely are becoming the norm, and a mid September program in Washington, D.C., organized by an Elon University faculty member is generating research questions that only a few years ago would have been considered moot.
Professor Cindy Fair in the Department of Human Service Studies co-led the daylong think tank hosted by Elon and the National Institutes of Health. She invited with her to the nation’s capital junior Jamie Albright of Charlotte, N.C., a human service studies major and Lumen Scholar studying the messages adolescents living with perinatally acquired HIV receive from medical care providers regarding reproductive decision-making.
The think tank brought together more than a dozen leading clinicians and researchers from the nation’s capital region including, the NIH, NIMH, Georgetown University, and Children’s National Medical Center, as well as top researchers from Columbia University and the University of Maryland. Participants represented a range of professional and academic disciplines, including social work, psychology, nursing and psychiatry.
The group identified several emerging issues to be examined. What information are providers giving to young people with perinatal HIV? Is that information focused on condom use, as opposed to what patients want out of relationships in life? How do patients choose to disclose their condition to their sexual partners? And who on medical care teams is having such conversations with the young patients?
“This think tank was about finding the next questions to ask, which is what research is all about,” Fair said. “It’s getting lots of smart people together in a room and asking, ‘What do we know? What do we need to know? And how do we go about answering the questions we’ve just identified?’”
The chance of a mother passing HIV to her child in utero is less than 1 percent if the mother is healthy and treating the condition, and the child is born via C-section. According to the Centers for Disease Control and Prevention, in 2008, there were nearly 9,200 youth or young adults living in the United States with perinatally acquired HIV infection. New treatments will add to that number in the years ahead.
“This is a new population, and they’re having children, they’re getting married, they’re going to college. They’re breaking new ground. How do you support them in the decisions they’re making?” Fair said. “Up until this point, the focus has been on pregnancy prevention and the transmission of HIV. Now, it should be, ‘What are your future aspirations? Do you want to have children?’”
Fair partnered for the think tank with Dr. Lori Wiener, director of the Psychosocial Support and Translational Research Program at National Cancer Institute and the parent of current senior Brett Brawerman and Marisa Brawerman ’10. Prior to joining the Elon faculty, Fair worked with Wiener at the NIH.
Albright said her Washington experience with Fair, her Lumen Prize mentor, will guide her undergraduate research into reproductive questions that HIV/AIDS infected young adults now face.
“There was a lot of discussion about some of the social factors that come into play when people are making decisions around reproduction that I hadn’t thought about before,” Albright said. “We talked about early maternal loss (where a mother dies of HIV/AIDS) having an influence, and that was fascinating. It’s interesting to see how medical providers picked up on that.”
In addition to the research questions, the group also plans to explore future research collaborations and grant writing; establish an ongoing online study group; investigate existing data sources to develop a clearer description of the demographic features and reproductive outcomes of this population; apply to offer a symposia at the July 2012 International AIDS Conference to be held in Washington; and develop a white paper on the topic of reproductive decisions and perinatal HIV.
The forum was made possible by funds from a Faculty Research & Development grant through the university.