An online survey that asked people living with HIV, largely from the UK, whether they would participate in HIV cure research, has found that the majority of participants would. Furthermore, they would be prepared to tolerate fairly significant risks to their health as long as these were explained clearly. The majority would also be prepared to take part in research that offered them no personal benefit, and to take part in treatment interruptions.
The opinion survey was conducted by the English research consortium CHERUB (Collaborative HIV Eradication of Reservoirs: UK Biomedical Research Centres), a collaboration of three hospitals in London and one each in Oxford and Cambridge, with the collboration of clinicans, community groups and government organisations.
It was devised partly because there has only ever been one previous community survey done on what people with HIV think about cure research – a US-based one conducted by Project Inform that published its findings at the International AIDS Conference in Washington DC in 2012.
The Project Inform survey asked people if they would be willing to participate in HIV cure research that offered them no personal benefit and found that the majority would be at least “somewhat interested”, and 45% “interested” or “very interested” in participating. Predictors of willingness to be involved for altruistic reasons included being African-American or Latino, being younger (age over 60 was negatively associated with altruism), knowledgeable about HIV, with a low income, and with a low CD4 count.
Interestingly, many of these associations seem to apply to the CHERUB survey too.
The trial participants
This survey, which was available to be completed online between 17 June and 2 November 2014, was completed by 982 people living with HIV. Eighty-nine per cent were UK residents and 68% had been born either in the UK or the US. Eighty-seven per cent were male, 79% defined themselves as white and 81% as gay.
Although the median time since diagnosis of participants was seven years, 28% had been diagnosed since 2012. Eighty-eight per cent were taking antiretroviral therapy (ART) of whom 90% reported an undetectable viral load – numbers in harmony with the recent Public Health England report on the UK HIV epidemic.
Eighty-five per cent of respondents currently had a CD4 count over 350 cells/mm3, though 43% had had a lowest-ever CD4 count below 200 cells/mm3. Eighty per cent reported positive feelings about taking ART and although 25% had experienced significant side-effects to ART in the past, only 3.7% were actually experiencing side-effects right now. Eighty-four per cent reported good adherence, defined as missing no more than a few doses a year.
Results
Most respondents – not unexpectedly – reported that they were either ‘very’ or ‘somewhat’ likely to take part in HIV cure research: 92% if the result of the research would mean completely clearing HIV infection, 87% if it meant enabling people to stay well off therapy for at least a while. The equivalent proportions who said they would be ‘somewhat’ or ‘extremely’ unlikely were 5% and 8.3% respectively.
What did people actually think a cure for HIV meant? Participants were asked to rank various attributes of a cure for HIV, in terms of what they thought most desirable. The most desirable attributes (selected as very desirable by at least 90% of respondents) were:
- having no risk of HIV-related health problems (96%);
- never needing to take ART (91%);
- no longer having HIV in one’s body (91%);
- having no risk of transmitting HIV to someone else (90%).
Improved life expectancy was also ranked highly (87%), while 85% thought never being able to catch HIV again was very desirable – not necessarily an attribute that might be delivered by all kinds of cure.
Fewer (60-70%) rated as extremely desirable no longer having to worry about HIV, no longer testing HIV positive and being able to tell people this, no longer having to see a doctor, and a ‘limited cure’ scenario of being able to stop HIV medications for a prolonged period.
How altruistic were respondents? While 572 individuals (58%) said they would be ‘very likely’ to get involved in cure research if there would be a personal benefit, only 309 (31%) said they would be very likely to get involved if there would be no personal benefit. This was balanced out, however, by respondents who said they would be ‘somewhat’ likely, so that altogether 83% would be at least somewhat likely to be involved in research where there was personal benefit and 71% where there would be none.
Less likely to sign up if there was no personal benefit were young people aged under 24 and people with low current CD4 counts and little knowledge about HIV and treatment, while women were slightly less likely. While people with significant ART side-effects were a little less likely to volunteer for cure research with no personal benefit, 89% of the few respondents with ‘very serious’ drug side-effects would, perhaps because it might mean at least getting a wider choice of medication.
Scientific research, especially in frontier areas like HIV cure, can never be without risk. So the survey asked respondents whether they would still participate if there was a risk of:
- at least moderate side-effects;
- their CD4 count falling to below 200 cells/mm3;
- their viral load becoming detectable for six months or more.
Fifty-nine per cent of respondents would still be happy to take part in research if these risks applied. There was a significant age difference here, with participants under 25 being less likely to tolerate risk (38% would still volunteer) and those aged 65 or over being a lot less likely (30%), possibly because they were already more likely to have health issues.
In a multivariate model, being willing to participate without personal benefit and to take risk was significantly associated with having a CD4 count of 201-350 cells/mm3 rather than over 350 cells/mm3 (twice as likely). So was being of American origin (68% more likely). People having little knowledge of HIV were over 40% less likely to participate without benefit or take risks, while people 65 or older were less than one-fifth as likely (odds ratio, 0.18) compared with people under that age.
Sixty-two per cent of respondents said they would probably or definitely be willing to stop taking their HIV medication for some months. Again, the over-64s were less likely to want to do this, as were people with little HIV knowledge. People’s biggest concern about stopping ART was becoming unwell, cited by 82% or respondents, while 76% were also concerned about HIV spreading further through their system and 72% were concerned about about becoming infectious again.
Participant comments
Survey respondents were able to make personal comments. There was quite a variety of opinion about what kind of cure would be good enough: while one UK woman simply said, “I want to get rid of HIV from my body completely” a Bulgarian woman said, “I’d likely to stop taking the drugs and remain well, though not necessarily HIV-free” and a UK gay man said, “I’d consider new drugs with less toxicity and less risk of resistance to be a cure as well.”
People did express unease about risk. A UK gay man said, “I’d find it hard to be ill again for another stretch of time, especially if it affected work”. But a Spanish gay man said, “If there is a strong possibility it could lead to a functional cure I think people would be prepared to tolerate more risks.”
Regarding personal benefits, an Italian woman said that, “Clinical trials are designed to prove that something does or does not work…until the results come through it is a mistake to think you can benefit.”
Others mentioned being willing to "get this epidemic extinguished" even without personal benefit, or wanting to benefit "the next generation".
One woman said, “I have a positive child and would be happy to take part in a cure trial so as to give him the best chance at a normal loving relationship.” A Zambian man said, “I know that for me to have survived on ART someone took a risk and volunteered for a study. This is my time to volunteer for someone else.”
Most people who mentioned treatment interruption assumed this would only be done after careful consultation with their doctor and would want to be given a lot of information before making such a decision.
In terms of cure research in general, a few respondents expressed scepticism that it would receive enough funding because it would simply be deemed less important than other health priorities or because the pharmaceutical industry has more of an interest in “keeping HIV chronic”. Others emphasised the importance of getting minority groups, especially women, involved.
People welcomed the survey in general as it helped them think about the future. “This has made me feel connected to the process of finding a cure,” said one black UK gay man.