Scientists at UMC Utrecht set out to find out what the consequences would be of a possible HIV cure for people living with HIV and for people who are vulnerable to HIV but do not yet have HIV. This is important so that health care providers can prepare for the day when an HIV cure becomes a reality.

Although much progress has been made in treating HIV, HIV still cannot be cured and the disease still has a major impact on the quality of life of people living with HIV. Many people living with HIV experience stress related to daily use of medication, the stigma surrounding the disease, keeping the diagnosis secret and feelings of guilt. In addition, many people are extra vulnerable because they are afraid of contracting HIV.

Curing HIV is a subject that many researchers are working on. Curing HIV is still hypothetical, something that people with HIV can only dream of. However, if HIV could actually be cured, what would change in the lives of people living with HIV? The answer to this question is not known, but it is relevant because it would help caregivers prepare for the day when an HIV cure becomes a reality.

Normal life

For this study - which was financially supported by the Aidsfonds - interviews were conducted with people with HIV in the Netherlands and with people who are vulnerable to HIV, but do not have HIV. Participants were recruited with the help of the HIV Vereniging. During these interviews the consequences of a possible HIV cure were discussed. The study group consisted of 42 participants (29 people living with HIV and 13 people at increased risk of HIV) ranging in age from 24 to 72. Of them, 26 identified as homosexual, 12 as heterosexual and four as bisexual.

"There is a lot of talk about suppressing HIV for a long time without HIV inhibitors," says researcher Kim Romijnders PhD, who works as a behavioral scientist at the Julius Center for Health Sciences and Primary Care Medicine at UMC Utrecht. "This seems like a more plausible next step in the treatment of HIV in the short term. However, the participants in our study were very clear: only the complete removal of the virus from the body was considered by them as a cure," Romijnders says. "In addition, participants hoped that an HIV cure could remove the shadow that HIV causes, which would make life more normal again. Participants looked forward to a future where it would no longer be necessary to discuss HIV, stigma would disappear, HIV inhibitors would no longer be necessary and there would be more sexual freedom."

The next step

These findings are a great first step, the researchers believe. "The next step is to develop a questionnaire to test our findings in a larger group of participants," explains Romijnders. "Ultimately, we want to prepare for the successful implementation of an HIV cure in healthcare," says Ganna Rozhnova PhD, principal investigator of the study. Rozhnova will use the results of the questionnaire to build a mathematical model in a new study that can calculate what impact a possible cure would have on the HIV epidemic in the Netherlands.

Publication

Romijnders KAGJ, de Groot L, Vervoort SCJM, Basten MGJ, van Welzen BJ, Kretzschmar ME, Reiss P, Davidovich U, Rozhnova G. The perceived impact of an HIV cure by people living with HIV and key populations vulnerable to HIV in the Netherlands: a qualitative study. Journal of Virus Eradication 2022;8(1):100066