Timothy Krulic
Joining the Search for a Cure
This article was originally published in the Spring 2018 issue of Poslink, the newsletter of Living Positive Victoria.
Have you ever wondered what it’s like to be part of a clinical trial for a cure for HIV?
Although antiretroviral therapy means that people living with HIV (PLHIV) in many countries have similar health outcomes and life expectancy to the general population, HIV research continues to search for a cure.[1]
The focus of most cure research is towards understanding where and how HIV persists on antiretroviral therapy. The virus hides most efficiently in the gut because of local inflammation that impairs the immune response. However a new study in Melbourne, VIVA, is looking at the effect of high dose vitamin D on HIV latency, anticipating a possible reduction in inflammation and leaky gut, improvement in the immune response to HIV and a reduction in the amount of HIV hiding in the body.[2]
People living with HIV that participate in clinical trials like VIVA have been at the centre of furthering our knowledge of HIV and helping to find new and better treatments. While participants may no longer risk as much through their participation, the ongoing value of these contributions cannot be understated.
So what is at stake in current research? And what’s it like to be one of the people with HIV participating in a clinical trial? Poslink spoke to two participants of the VIVA trial, Gareth Graham and Ian Muchamore to find out.
Can you tell us what made you want to take part in the trial?
Gareth: I have always wanted to get involved in trials and do my bit for the community where I can. When I heard about a trial involving vitamin D, I knew that it was something that came with not too many risks.
Ian: I think it is important that health consumers engage in research and especially clinical research because we do not get health improvements without participation. When we look historically at clinical research, the risks that PLHIV took in clinical trials, and the ways that advocacy changed how health and clinical trials are undertaken worldwide, my contribution is pretty negligible.
What will you be required to do as a participant?
Gareth: My understanding is I will get either a placebo or vitamin D for six months. I won’t know whether I have the placebo or not and I’ll have my blood taken every three months.
Ian: The most important part of what I am required to do is understand the consent process and what the potential risks might be. Although there are probably few risks, one is that my calcium levels may become too high. I came back with a very slightly elevated level of calcium last week so I now have the joy of collecting a day’s sample of urine in the office in a plastic bottle to take back to the survey team.
How have you found the experience so far? Is there anything you didn’t expect?
Gareth: I don’t really have any expectations other than that I’m excited to be a part of it. I have wanted to get involved with something like this for a while and I hope I get the vitamin D and not the placebo. It will be hard to not be tempted go and get a blood test to find out but of course I won’t!
Ian: I am about halfway through taking one, horse pill-sized of either vitamin D or placebo a day. It’s a big brown-reddish pill. It has been just a matter of remembering to take an extra pill each morning for me and to remember to have a bit of extra calcium, which is important for absorption. I’ve been back for a couple of extra visits and the clinical team has always been really charming – it’s actually enjoyable to find out what’s going on in the sector. My expectations of the study? I am not expecting this to be a mind-blowing breakthrough in cure research but you never know. I have been surprised in the past when certain aspects of HIV science that I have not understood have proven to be important in the long term. So I am prepared to be surprised.
Do you have any thoughts about the involvement of people living with HIV in clinical trials?
Gareth: I do not like to put people in the same basket because we all have different points of view and some people want to be more involved than others are. I think if you are healthy and able and you want to get involved, you should. Considering what PLHIV used to have to put up with, showing up once every three months to get a blood test to try and help find a cure or see what vitamin D can do for us is a fairly small contribution. I am happy to do it!
Ian: I think the contributions historically have been huge and cannot be overstated. That said, I think we can do more to ensure that there is meaningful engagement of PLHIV in framing research questions and protocols. Even 30 years on, we need to reflect how we can better engage PLHIV – not just treating us as research subjects.
I also think it is important to explain to the wider community what a clinical trial means in everyday terms and to move away from the tremendously harmful hype that we see around HIV breakthroughs and poor reporting. I think that it is seriously damaging to over-report and misrepresent HIV studies to the extent that they suggest that an HIV cure is around the corner.
Photo: Ian on his last study visit
The VIVA trial has now completed enrolment. Researchers at the Doherty Institute, Royal Melbourne Hospital, the Alfred and Melbourne Sexual Health Centre would like to express their sincere gratitude to all those who have expressed interest in the trial.
[1] Hogg R, Lima V, Sterne JA et al. (2008) Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. Lancet 372(9635):293-9.
[2] Pitman, M (2018). VIVA trial: Vitamin D in HIV latency
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