Featured news from NHIVNA

HIV-related news from NAM

Realism needed about the benefits and risks of taking part in HIV cure studies
Roger Pebody, 2016-08-31 07:30:00

A significant proportion of people living with HIV would be willing to take part in a study towards a cure for HIV, research presented at the 21st International AIDS Conference (AIDS 2016) in Durban, South Africa last month shows. However some potential participants may not fully understand that taking part in an early-phase study is highly unlikely to afford any personal clinical benefit, but might have the potential to cause harm.

There is “an ethical imperative to understand the motivations, decision‐making, expectations and comprehension of potential trial participants,” researchers say. Improved community engagement and education appears to be needed.

According to an Australian survey, 82% of people living with HIV would be ‘willing’ or ‘very willing’ to participate in a clinical trial related to HIV cure research. However respondents would be less willing to participate if it:

  • would increase their susceptibility to illness (87%),
  • risked developing resistance to current antiretrovirals (79%),
  • resulted in an unpredictable viral load for up to one year (63%), or
  • involved weekly visits to a medical clinic for several months (40%).

In contrast, 31% would be more willing to participate if it would help future generations but offered no personal benefit.

When asked about the possible characteristics or benefits of a cure, respondents indicated that the most important was not passing the virus to others. Also very important was not being at risk of ill‐health due to advanced HIV disease.

Other outcomes were ranked lower: stopping using HIV medications, being considered a person without HIV infection, not getting HIV again for a second time, fewer medical visits.