With over 10% of young women in Malawi living with HIV, the epidemic is far from over. Looking beyond the widespread measure of prevalence, research from the Tsogolo La Thanzi (TLT) study has shown that almost half of young women in Balaka, Malawi don’t know their HIV status. This uncertainty impacts many facets of their lives, including relationships, fertility, and mortality, according to findings published in the new book, An Epidemic of Uncertainty: Navigating HIV and Young Adulthood in Malawi by Jenny Trinitapoli, PhD. Trinitapoli is a professor of sociology at the University of Chicago and director of the Third Coast Center for AIDS Research Development Core.

“Uncertainty about HIV is a distinct and important feature of the epidemic that has not yet been fully explained in prior research,” said Trinitapoli. “I know that uncertainty can be examined empirically and that doing so is essential for understanding HIV in Malawi and in other contexts characterized by generalized epidemics today.”

The TLT study in Balaka took place between 2009 and 2019. It began with a sample of 1,505 women aged 15-25 in 2009 and followed them for ten years, adding new women to the sample on two separate occasions. The research team fielded a total of ten surveys using standardized questionnaires. Key measures for studying uncertainty came from a section of the TLT questionnaire that was designed to gauge each individual’s perceived likelihood of risk using an interactive approach. Respondents were given a small plate and ten white beans and were asked to communicate probabilities of certain things happening. For measuring the likelihood of a current HIV infection: ten beans indicated a known HIV infection, zero indicated no chance of infection, and five suggested a 50-50 chance of testing positive for HIV.

From the surveys and questionnaires, Trinitapoli learned that although most respondents had been tested for HIV in the preceding months, a large proportion were still uncertain about their HIV status on the day they were surveyed. Women who reported a strong likelihood of current HIV infection (7-9 beans) often also reported poor health; for example, sudden weight loss or other symptoms associated with early HIV infection. But even those who expressed just a tiny bit of uncertainty about their HIV status (placing just 1 or 2 beans onto the plate) reported lower levels of physical and mental health, even if they tested seronegative within the TLT study protocols. Based on these results, HIV-related uncertainty has its own consequences, independent of the virus.

Trinitapoli describes how being a member of the Third Coast CFAR helped with the creation of her new book.

“In 2018, the Third Coast CFAR invited me to present at a Monday seminar. I came away from that talk convinced that the argument about HIV uncertainty had resonance for our field because it was something a lot of people wanted to talk about,” said Trinitapoli. “Directing the CFAR’s Development Core, I’ve drawn two different kinds of inspiration that helped me propel the project forward. I get to read proposals that show me where the field is headed in the future and what the most innovative young scholars prioritize, both in terms of questions and methods. I also get to see many examples of effective science communication to interdisciplinary audiences and meaningful community collaborations,” said Trinitapoli.

In addition to the Third Coast CFAR, many other supporters were instrumental in getting Trinitapoli’s book between the covers and into the hands of readers.

Jenny Trinitapoli, PhD

“I’m incredibly grateful to the wonderful Tsogolo La Thanzi research team and all the respondents we worked with over the course of a decade. It feels like we all grew up together,” said Trinitapoli. “I’m also appreciative for the funding TLT received from NICHD and the Max Planck Institute for Demographic Research for data collection, and for the incredible support I received from the University of Chicago Press throughout the book review and production processes. Lastly, colleagues from around the world provided me with feedback on big and small pieces of text during the writing process, and I couldn’t have finished the book without their help.”

Trinitapoli is already looking forward to new collaborations that will improve the science of uncertainty with respect to HIV status, especially for young adults.

“First, I want to establish whether these uncertainty measures can be leveraged for targeted HIV prevention efforts such as PrEP distribution. Second, I’d like to expand upon the consequences of HIV uncertainty for people’s mental health, wellbeing, and relationships. Third, I’m convinced that cheap rapid tests with a shorter window-period could be transformative,” said Trinitapoli.

In collaboration with an undergraduate research assistant, Trinitapoli produced a study guide to go along with the book. She hopes to make it easy for instructors to assign the text in their graduate or undergraduate courses and spark interesting discissions among students about PrEP, the future of HIV, and uncertainty with respect to HIV status.

An Epidemic of Uncertainty: Navigating HIV and Young Adulthood in Malawi is available at the University of Chicago Press. Use the code UCPNEW at checkout to receive 30% off your purchase. The book is also available on Amazon and at major bookstores.