BHIVA 2015: Many People with HIV Willing to Take Part in Cure Research Despite its Risks

alt

There is a strong interest among people living with HIV in research towards an HIV cure, with many potential participants willing to consider antiretroviral treatment interruption. Respondents to a survey presented at the British HIV Association (BHIVA) conference this week in Brighton generally understood that they would be unlikely to benefit personally from cure research. Priorities for a cure were to eliminate health problems and the risk of HIV transmission, rather than necessarily testing HIV-negative.

[Produced in collaboration with Aidsmap.com]

Last year researchers received 982 valid responses to a Internet survey on the topic, promoted on www.aidsmap.com and other HIV websites, social media, advocacy forums, and UK HIV clinics. Two-thirds of respondents lived in the UK, but responses were accepted from any interested person living with HIV.

 

 

Four-fifths of respondents were gay men. The median time since HIV diagnosis was 7 years, but over a quarter had been diagnosed in the past 2 years. The vast majority were doing well on antiretroviral therapy.

This was a self-selecting sample, but nonetheless the 95% of respondents who would participate in a cure study suggests an enthusiasm for future research.

As could be expected, interest in a "sterilizing" cure, or complete viral eradication, was very strong. Over 90% of respondents said that it was very desirable or extremely desirable that a future cure would mean that "you no longer have HIV in your body."

But researchers are more hopeful about the possibility of developing a "functional cure," in other words, one that does not eradicate the virus but which would allow someone to have a prolonged period with neither daily treatment nor disease progression. Respondents also expressed very strong interest in outcomes that could be associated with a functional cure:

While all suggested outcomes were rated as desirable by a majority of respondents, there was somewhat less interest in the possibility of being able to tell people that you do not have HIV (over 60%) or of no longer needing to attend clinics for regular monitoring (just under 80%).

Many participants submitted detailed extra comments illustrating their priorities, for example:

"I would love to be able to stop taking the drugs and remain well with HIV infection under control (not necessarily HIV-free). After 15 years I may say that I am quite tired taking drugs every day."

Another respondent said that HIV treatments worked well for him and that he was in good health. Nonetheless:

"Finding a cure remains very important to me. I believe the reason a cure remains so important are social and psychological -- rather than medical. The stigma that still surrounds HIV makes it hard for someone like myself to form a meaningful lasting relationship. It also eats silently on your self esteem."

Many respondents to this survey suggested altruistic reasons for taking part in HIV cure research:

"I would happily take part in a cure study if it would benefit others. Knowing that my life would have had some purpose is worth the possible side effects."

"I have a positive child and I would happily take part in a cure trial so to give him the best chance at a normal loving relationship as he matures."

But participants said they would need to carefully weigh the pros and cons before taking part in a cure study. Many realized that there could be risks to participation, so the advice of their doctor would be important.

"Given that medication causes me little inconvenience or side effects then I think that any participation in a study that involves possible risks would need to be considered carefully."

The quantitative survey showed many respondents were willing to take risks with their treatment. Over half were willing to take part in a study even if doing so involved the risk of their CD4 cell counts dropping below 200 cells/mm3, their viral load being detectable for more than 6 months, or of having severe side effects. Almost two-thirds said they might be willing to interrupt their antiretroviral treatment as part of a study.

"This would not be a decision I would make myself, but rather one I would make alongside the consultant carrying out the trial, and I would be advised by the guidance of that consultant."

The researchers concluded that a cure remains a research priority for people living with HIV. A wide range of possible cure outcomes would be welcomed.

But many potential participants have a strong altruistic motivation that must be carefully handled when recruiting to studies. Potential participants value the advice of their clinicians and may need clear patient information to help them make a decision.

4/24/15

References

R Simmons, et al. A UK survey of HIV-positive people's attitudes towards cure research. 21st Annual Conference of the British HIV Association (BHIVA). Brighton, April 21-24, 2015.Abstract P39.

M Kall, et al. Altruism and medical advice are key factors in decision-making about participating in HIV cure research: results from a UK-wide survey of people living with HIV21st Annual Conference of the British HIV Association (BHIVA). Brighton, April 21-24, 2015. Abstract P159.