Many people living with HIV willing to take part in cure research, despite its risks

There is a strong interest among people living with HIV in studies towards an HIV cure, with many potential participants willing to consider antiretroviral treatment interruption. Respondents to a survey presented at the British HIV Association conference in Brighton this week 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.

Last year, 982 valid responses were received to an 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 diagnosis was seven years, but over a quarter had been diagnosed in the past two years. The vast majority were doing well on antiretroviral therapy.

Glossary

cure

To eliminate a disease or a condition in an individual, or to fully restore health. A cure for HIV infection is one of the ultimate long-term goals of research today. It refers to a strategy or strategies that would eliminate HIV from a person’s body, or permanently control the virus and render it unable to cause disease. A ‘sterilising’ cure would completely eliminate the virus. A ‘functional’ cure would suppress HIV viral load, keeping it below the level of detection without the use of ART. The virus would not be eliminated from the body but would be effectively controlled and prevented from causing any illness. 

disease progression

The worsening of a disease.

sample

Studies aim to give information that will be applicable to a large group of people (e.g. adults with diagnosed HIV in the UK). Because it is impractical to conduct a study with such a large group, only a sub-group (a sample) takes part in a study. This isn’t a problem as long as the characteristics of the sample are similar to those of the wider group (e.g. in terms of age, gender, CD4 count and years since diagnosis).

eradication

The total elimination of a pathogen, such as a virus, from the body. Eradication can also refer to the complete elimination of a disease from the world.

functional cure

Also known as remission, a ‘functional’ cure would not eradicate all HIV, but would enable the body to stop HIV proliferating and causing illness, without the need for any further treatment. It is a goal of research. 

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 ‘sterilising’ cure 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 which does not eradicate the virus but which would allow someone a prolonged period with neither daily treatment nor disease progression. There was also very strong interest by respondents in outcomes that could be associated with a functional cure:

  • “There is no risk of HIV-related health problems”: over 95%
  • “There is no risk of passing HIV to sexual partners (even off treatment)”: over 90%
  • “Never need to take HIV medications”: just under 90%

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 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 up the pros and cons before taking part in a cure study. Many realised 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 were willing to take risks with their treatment. Over half of respondents were willing to take part in a study even if doing so involved the risk of CD4 cell counts dropping below 200 cells/mm3, their viral load being detectable for over six 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 for HIV 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 which 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.

References

Simmons R et al. A UK survey of HIV-positive people's attitudes towards cure research. BHIVA conference, Brighton, April 2015, abstract P39.

Kall M 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 HIV. BHIVA conference, Brighton, April 2015, abstract P159.