To mark this International Women’s Day, we spotlight the imperative need for inclusivity in the field of HIV research.
Professor Chloe Orkin, who is the Lead for HIV research at Barts Health NHS Trust and director of the SHARE Collaborative for health equity (and a patron of NHST), has been a staunch advocate for improving representation throughout her career.
In this short Q&A with NHST, Professor Orkin shares insights on the under-representation of women in this field, and shares perspective on how it can be combatted.
Tell us about your personal and professional motivation in regards to HIV research?
I am deeply interested in gender politics and am committed to improving the representation of women in clinical trials. It has always been clear to me that the importance of including women in HIV research needs to be underscored and addressed. My career has been and continues to be driven by the need to ensure that research reflects and benefits a diversity of individuals. A clear objective is transforming the landscape of HIV research to be truly representative and inclusive.
What challenges have you encountered in regards to women being adequately represented in clinical trials?
Women have always been under-represented in HIV treatment and that continues to this day. Research I presented only recently at the Conference on Retroviruses and Opportunistic Infections highlighted that in trials for long-acting injectable therapies, women were notably underrepresented with respect to the country proportion of women living with HIV.
How can such under-representation be addressed?
It requires a particular focus on those who have been historically marginalised. This means not just advocating for more inclusive research, but also designing studies that actively prioritise diverse participation. Effective strategies include intentional recruitment and inclusive protocol design. For instance, the ILANA study I led in the UK recruited over 50% women and people of colour, embedding an approach that countered sexism, racism, and ageism within its protocol.
What guidance would you offer to young researchers or clinicians who want to focus on improving healthcare inclusivity and efficacy for women with HIV?
Remember that patients are not hard to reach, it is our services that are hard to access. We need to tailor our services to what all of our patients need.
You were the global lead author for the FLAIR study which evaluated the first-ever long-acting injectable HIV therapy. Tell us about the key findings, and how they benefited the understanding and treatment of HIV in women.
Women made up around 20% of participants in the FLAIR study. When all the studies in long-acting injectable treatment with Cabotegravir and Rilpivirine (CAB+RPV) were pooled to establish a larger sample of women, there were no differences found between men and women, the treatment was equally effective. Such studies are crucial for developing treatment options that are accessible and effective. Representation is essential to ensure everyone can benefit equally from scientific advancement.
As a global medical leader for the U=U campaign, do you see this message particularly resonating with women living with HIV, or needing adaptation?
The Undetectable=Untransmittable message is powerful, yet there’s a need for nuanced communication. Some studies have shown that women have been slightly more sceptical of the message. It is also important to say that in breastfeeding the risk is negligible, not zero unlike all other circumstances. Again, tailoring the messaging to patients with specific realities is key.
Looking ahead, how do you envision HIV research and treatment evolving, particularly in relation to women’s health and inclusivity?
Women experience many inequities. Violence against women and girls is a huge factor in determining risk of acquiring HIV, and it is also something that women living with HIV experience. Our services need to be accessible and competent in identifying people affected by VAWG to signpost them to relevant services.
In terms of research, I hope that the global efforts to include women in trials will be successful. From a treatment point of view, long-acting PrEP has the potential to transform the ability of women to be in control of their HIV prevention options.
Advances in equitable research and healthcare will overall afford women greater autonomy and control over their health.
Finally, is it important that medical and academic circles also embrace representation, and where do you see your role within this?
Representation matters immensely. It’s vital to also embrace inclusion in terms of those who lead and conduct HIV research, as well as those who participate in it. As Billie Jean King said: you have to see it, to be it. As a visible LGBTQ+ advocate, and in roles I’ve held such as President of the Medical Women’s Federation, I try to make sure that younger people see me going about my business and register that there is a place for people like them in medicine and academia too. Diversity on both sides of research and clinical trials will only enrich our understanding and approach to healthcare long-term.
ABOUT PROFESSOR CHLOE ORKIN
Professor Orkin is the Lead for HIV research at Barts Health NHS Trust and directs the SHARE Collaborative for health equity.
Following a successful 16-year clinical career at Barts Health NHS Trust, Chloe was appointed Professor of HIV Medicine at Queen Mary University of London in 2019. She leads an internationally renowned therapeutic trials unit that has made major contributions to drug development and the licensing of around 20 new therapies. Chloe is global lead author for the FLAIR study which evaluated the first-ever long-acting injectable HIV therapy and was published in the NEJM. Chloe is lead investigator for several other pivotal therapeutic trials and local principal investigator for a COVID-19 monoclonal antibody study. Her research also focuses on ways of including and engaging women, pregnant women and racially minoritised people in clinical trials. Chloe led research and blood-borne virus testing campaigns (Going Viral and Test Me East) in emergency departments which have changed practice.
Chloe is past President of the Medical Women’s Federation, and a visible LGBTQ+ role-model. She chaired the British HIV Association between 2016-19 and challenged discriminatory legislature and is considered a global medical leader for the U=U campaign. She is on the Governing Council of the International AIDS Society.