The SERO Project: National Criminalization Survey
Washington, D.C. July 25, 2012
Preliminary data from the Sero Project’s ground-breaking survey of more than two thousand people living with HIV (PLHIV) in the U.S., released July 25, 2012, at the International AIDS Conference in Washington, D.C., reveals HIV criminalization is a significant deterrent to testing, accessing care and treatment for HIV:
• One quarter of respondents (25.1%) indicated they knew one or more people who told them they did not want to get tested for HIV because of fear of prosecution if they tested positive; more than 5% indicated that “many people” have told them this.
• Almost half of respondents (49.6%) felt it could be reasonable for someone to avoid testing for HIV, and 41.6% felt it could be reasonable to avoid HIV treatment for fear of prosecution.
“We expected the survey to show criminalization is a deterrent to HIV testing, but these findings indicate it is an even bigger obstacle than previously believed,” said Laurel Sprague, the project’s principal investigator who is also Sero’s Research Director. “The community’s response has been tremendous; it is obvious there is tremendous concern about HIV criminalization. I look forward to further analysis of the survey responses, including of those who are HIV negative or do not know their HIV status, which will be released in a report later this year.”
Sean Strub, Sero’s executive director and the founder of POZ Magazine, said “This is a wake-up call for public health officials and policymakers who have failed to recognize the extent to which HIV criminalization hampers efforts to combat AIDS. We’ve known for years that HIV criminal statutes do not achieve their intended purpose, to reduce HIV transmission. Now it is clear that these statutes are driving the epidemic, because of how they fuel stigma and discourage HIV testing and accessing the treatment that reduces transmission.”
Strub and Sprague are both long‐term HIV survivors and advocates who have championed self‐empowerment for people with HIV to combat stigma and improve health outcomes for themselves and their communities. The 2,076 people living with HIV in the United States who responded to the Sero survey also painted a disturbing picture of a disabling legal environment for people with HIV:
• More than a third (38.4%) reported they worried a few times or frequently about being falsely accused of not disclosing their HIV positive status; amongst transgendered persons that cigure rose to 60%.
• Respondents in the Midwest (45.9%) and South (40.9%) were more likely to express fear about false accusations than those in the West (35.1%) and Northeast (32.3%).
• Just less than two‐thirds (62.7%) of respondents were not certain whether or not their state required people with HIV to disclose their status to a partner before having sex, with the uncertainty highest in the Northeast (72.4%) and West (71.3%) and South (61.6%) and lowest in the Midwest (40.4%).
• There were significant regional differences amongst those reporting that they were informed about potential criminal liability at the time of their diagnosis. The highest rate was in the Midwest (28.8%) and South (14.8%) and lower rates were seen in the West (7.5%) and Northeast (4.1%).
• Respondents also indicated a lack of clarity about what could subject them to prosecution (47.7% “not clear”, 30% “somewhat clear” and 22.3% “completely clear”). Men reported a greater lack of clarity on this point.
The top reasons cited for disclosure were that it is “the right thing to do”, “to have honest relationships” and “not cause harm to another” or “to protect their partner”, not that it was required by law or because of fear of criminal prosecution. More than 8 in 10 PLHIV in the study said that they believe that sexual partners share equally in the responsibility for HIV prevention.
The detailed survey, which required 20 to 25 minutes to complete, was conducted online in June and July of 2012, and is the first in‐depth examination of the effect of HIV criminalization on people with HIV and one of the largest surveys of people in the U.S. with HIV ever conducted. Further results and analysis will be released later in the year.
The Sero Project is a not‐for‐profit human rights organization combating HIV‐related stigma by working to end inappropriate criminal prosecutions of people with HIV for non‐disclosure of their HIV status, potential or perceived HIV exposure or HIV transmission.
The Sero Project is supported by the Elton John AIDS Foundation, Broadway Cares/Equity Fights AIDS and the H. van Ameringen Foundation as well as many individual supporters. Special thanks to POZ Magazine, the North American regional affiliate of the Global Network of People Living with HIV/AIDS, the Positive Women’s Network, The Body and other community resources that assisted in survey promotion.
Special thanks also to Thom Riehle, Ian Anderson, Edwin Bernard, Regan Hofmann, Cecilia Chung, Julie Davids, Mark S. King and Alex Garner for their expertise and support.