Clinical trials often lack diverse participants, skewing results and compounding health disparities in the groups of people left out of such studies. This is particularly true of HIV research trials, which primarily recruit young white men.
A native of Johannesburg, Chloe Orkin, MBBCH, MSc, is a professor of HIV medicine at Queen Mary University of London and the academic lead for equality, diversity and inclusion at Queen Mary’s School of Medicine and Dentistry.
Orkin is also the lead for HIV research at Barts Health National Health Service Trust in London, where she provides care for people living with HIV and runs a busy clinical trials unit.
What’s more, as director of the Sexual Health and HIV All East Research (SHARE) Collaborative, she investigates the inequalities associated with poor sexual health and HIV, especially among minority communities across east London.
“I want to make sure that equity is at the heart of everything that I do and that we try to change the narrative around what is an acceptable level of participation,” Orkin says. “That we don’t just accept that it’s impossible to recruit women or it’s impossible to recruit anybody that isn’t a young white man. That’s not true.”
Orkin began her early career training in South Africa, where she looked after people living with HIV who lacked access to antiretrovirals, many of whom died. She also volunteered at an HIV hospice in Johannesburg, working primarily with people with severe opportunistic infections, before moving to the United Kingdom to continue her studies.
More recently, Orkin led an international study that showed that mpox (formerly monkeypox) can be very severe in people with advanced HIV.
As lead author of the First Long-Acting Injectable Regimen (FLAIR) study, Orkin, along with her colleagues, showed that monthly long-acting cabotegravir and rilpivirine injections are as effective as standard daily oral HIV medications for people new to treatment. “Long-acting treatment is a huge focus of mine,” she says, “liberating people from the burden of daily treatment is important.”
Medical activism has consistently been at the center of Orkin’s career. As a scientific adviser for the Medicines Patent Pool, a public health organization, Orkin works to establish equitable access to new HIV drugs in countries where patients may not be able to pay market rates.
To ensure equity in HIV research she and fellow Queen Mary University researchers initiated a follow-up to the FLAIR study, the Implementing Long- Acting Novel Antiretrovirals (ILANA) study, which is already fully enrolled.
“We have developed an anti-racist, anti-sexist and anti-ageist protocol that makes sure we include people, because most of the studies that I have been part of, that have been set up by others, haven’t included very many women,” she says. “Our study is going to be different.”
Outside of work, Orkin finds solace in playing with her three dogs and two cats and spending time with her partner of nearly 22 years. Orkin, who is Buddhist, also enjoys painting intricate mandalas, playing the ukulele, singing, and reading educational books on Buddhism, psychology and neuroscience and how the three subjects intersect.
Orkin emphasizes the importance of boosting diversity not only among trial participants but also among researchers. She notes that studies have shown that including women and people of color in research settings prompts “more interesting and nuanced” questions. “It’s about bystandership and trying to challenge existing narratives.”