Due to young people continually having the highest rates of HIV diagnoses, and the lowest rates of viral suppression or pre-exposure prophylaxis (PrEP) uptake, the International Conference on Stigma taking place at Howard University in Washington, D.C. this Friday will feature a focus on youth, with the theme, "Youth Power Up for a Stigma-Free Future." This year, the conference hopes to increase youth participation at all levels of the conference planning and implementation by outreaching to youth from the nation's capital and throughout the United States. The International Conference on Stigma is arguably the only HIV conference in the country that focuses entirely on the issue of stigma, and to build collective power for individuals, organizations, providers, and communities in addressing and combatting health-related stigma.
The International Conference on Stigma began on Dec. 1, 2010, initially as a World AIDS Day event. The idea came out of the Pediatric HIV Research Community Advisory Board of a now-defunct organization called Pediatric AIDS/HIV Care, Inc. from Washington, D.C., as well as several parents and grandparents of children living with HIV in 2009.
As a group, they recognized that the biggest barrier to care was HIV-related stigma, not the disease itself. After having many discussions, in June 2010 they decided to launch a conference dedicated to the issue, which was held just six months later, with initial financial support from the Office of AIDS Research at the National Institutes of Health.
Health-related stigma refers to negative attitudes and beliefs that cause people to fear, reject, avoid, and belittle people with certain illnesses or conditions. It involves labeling people with an identity or a health condition as different, which can lead to informal forms of isolation and targeting, and can include discrimination, criminalization, and sometimes violence. Stigma can result in worse health outcomes for people living with HIV.
In 2017, the Southern HIV/AIDS Strategy Initiative released the findings of a survey of 201 people with HIV in the southern United States. They found that "42% of respondents agreed or strongly agreed that 'I have been hurt by how people treated me after learning I have HIV'; and nearly one-third (32%) agreed or strongly agreed that 'some people avoid touching me if they know I have HIV.'" They also found that the prevalence of different forms of stigma was associated with missed medical visits and medication doses.
Stigma also still plays out in the lives of young people where HIV is concerned. A 2017 survey from Kaiser Family Foundation found that more than half of young adults under age 30 said they would be uncomfortable having a roommate with HIV. More than half also had incorrect information about how HIV was transmitted, believing that HIV can be transmitted by spitting or kissing.
But the conference on stigma seeks to change these statistics by creating a space where participants can develop personal and structural strategies to combat stigma, in addition to hearing presentations on the latest research. Participants and organizations are challenged to return to their respective communities and use the strategies developed to make an impact on individuals and organizations to combat stigma in efforts to increase testing for HIV and engagement with medical care, and support people living with HIV in their effort to disclose their diagnosis and build the tools and ability to adhere to treatment and follow-up care. In previous years, conference participants have come from across the United States, India, Nepal, South Africa, Cameroon, England, Nigeria, and Kenya.
The conference is organized by a small but effective staff from Howard University Hospital, led by Sohail Rana, M.D., who is a professor of pediatrics at Howard University Hospital. He has served as the conference director since its inception in 2010, with support from Patricia Houston, M.S., project director of pediatric hematology and HIV research at Howard University Hospital. The conference committees are also made up of community volunteers from around the globe.
The one-day conference is filled with break-out workshops, keynote addresses, lunch, the stigma awards, and a host of organizations that will be tabling. The conference also allows for artists to submit works on the theme of stigma annually and provides prizes to the winners.
For more details about the conference, please visit www.whocanyoutell.org.