Multiple factors influence willingness to participate in HIV cure research among those living with the virus, including hopes for improvement in their own health and the desire to contribute to science and help others. On the other hand, concerns about possible personal risks of participating in cure trials may give individuals pause when considering enrolling.
Publishing their findings in the Journal of Virus Eradication, researchers conducted a qualitative survey with 400 HIV-positive individuals in the fall of 2015 about their attitudes toward cure research.
The respondents hailed from 38 states and Puerto Rico. A total of 343 of them answered all the questions in the survey while 57 only partially completed it. Seventy-eight percent of the respondents were men. The group had a median age of 51 and ranged in age between 19 and 74 years old.
The researchers found a greater than 50 percent willingness among the respondents to participate in 14 different kinds of HIV cure studies. The respondents were motivated to participate by expected potential benefits to their HIV-related health, as well as reducing their risk of transmitting the virus to others. They were also motivated by altruism and were enthusiastic about helping others and contributing to scientific inquiry. To a lesser extent, personal benefits motivated them, such as feeling good about contributing to research and receiving lab work for free.
Sixty-eight percent of the participants said they were somewhat willing to stop taking antiretrovirals in an HIV cure trial.
Categories of people less likely to want to participate in certain types of HIV cure studies included women, African Americans, Latinos, those in the lowest income bracket in the study, people who had been living with HIV for longer and those who perceived themselves as “very healthy.”
The respondents cited perceived potential risks of participating in HIV cure research as potential deterrents to entering such a trial. These included activating genes that could cause cancer and possibly developing resistance to HIV treatment.
Eight percent of the respondents thought an HIV cure was already available, while 3 percent believed scientists would never develop a cure.
To read the study abstract, click here.