A survey of attitudes regarding participation in HIV cure research found a disconnect between perception and practice.
By Benjamin Ryan
Among people living with the virus, there is a perception that HIV cure trials do not match the actual practice in such studies, reports aidsmap.
Jillian Lau, MBBS, from Monash University in Melbourne, and her colleagues conducted a survey on cure research among 442 people with HIV and published their findings in AIDS & Retrovirus Research.
Most participants lived in middle- and high-income countries, 22% were women, 64% were gay, and 39% were over 50 years old. Ninety-five percent were taking antiretroviral (ARV) drugs, of whom 83% reported an undetectable viral load.
In cure studies, people with HIV may be taken off their antiretroviral drugs (ARVs) for a period of time, during which they are closely monitored. When their viral load increases, they resume treatment. This is known as planned treatment interruption (ATI) and is considered relatively safe.
About a third of those surveyed said they would prefer monthly CD4 testing during an ATI, whereas in practice such monitoring is done weekly.
Thirty-five percent of respondents said that during an acute respiratory infection (ARI), they would prefer to maintain an undetectable viral load at all times. However, during ARIs, viral loads are expected to eventually increase. Twenty-seven percent said they would accept their viral load rising to 1,000.
The new study also surveyed healthcare providers, 18% of whom said they were uncomfortable with their patients developing a detectable viral load during a cure study and would prefer to restart antiretroviral therapy (ART) as soon as they crossed this threshold. A third of the physicians said they were not concerned if their patients developed a detectable viral load in such a study, as long as they did not develop signs of illness.
Both people living with HIV and healthcare providers said they would prefer CD4 counts to remain above 350 during the cure research. Both groups were also “very concerned” about HIV transmission during an ATI, as has been documented in rare cases.
In addition, HIV-positive individuals expressed concern that their health would deteriorate during a cure study, that they would be at risk of opportunistic infections, and that their virus would develop drug resistance.
“Our work demonstrates that the expectations of people living with HIV regarding immunoassays in cure-focused clinical trials do not align with current practices, with people accepting less [having a detectable viral load] during immunoassays and preferring less frequent monitoring,” the authors concluded. “Clear educational messages and careful consent processes regarding immunoassays in HIV cure research should be developed.”
From: https://www.poz.com/article/many-people-hiv-understand-cure-trials-work