Should We Care about LGBTQ+ Representation in Clinical Trials?
George Partridge,
Health Equity Lead
As it comes to the end of pride month, I’ve been reflecting – it’s that time of year now more conflicting for the LGBTQ+ community than straight people in Western society. Granted, it makes me feel noticed to see people discussing and supporting my existence in the world and acknowledging more work needs to be done. At times it can be slightly overwhelming with consumer industries being lit up like a giant rainbow Christmas tree to declare support for the LGBTQ+ community under a motto of‘ love is love’ and get their flag-waving profits. The pharmaceutical industry is historically distant from many LGBTQ+ issues and hasn’t been involved in this giant colorful performance. However, over the last few years health equity advancements have become a priority for this industry, and with that comes diversity and inclusion advancements for patients. It’s quite clear those who identify with the LGBTQ+ community have often been overlooked in these efforts or left out entirely. I want to take a moment this Pride month to critically discuss the landscape of LGBTQ+ inclusion in clinical trials – does this matter? Do we care? what can we be doing better?
LGBTQ+ Predispositions and Differences
Depending on the source between 57 – 63% of US adults believe healthcare is a human right[1] however, you are not going to receive this right if there are systemic barriers in place that reflect your less-privileged position in society. We know that LGBTQ+ groups are predisposed to neurological conditions[2], HIV[3], and numerous cancers[4] but with only rare incidences of trials recording sexual orientation we don’t know if these drugs have been tested on this primary patient group.
This is particularly damaging for mental health and neurological conditions as LGBTQ+ individuals resemble more similar brain structures[5] compared to heterosexual counterparts which can contribute to the efficacy of new treatments. A recent Nature article [6]recommended that LGBTQ+ participation needs to be included in any studies that apply neuroimaging due to the prominent differences in brain morphology.
Are LGBTQ+ populations underserved in clinical research?
Barely any clinical trials in medical history actually report sexual orientation and therefore representation in clinical trials remains unclear. This in itself can be interpreted as a disservice to the LGBTQ+ community as industries can sit on this ‘lack of data’ fence without having to adapt their current clinical trial procedures or tackle discrimination. There is hope for the future though, at the HealthEquity in Clinical Trials Congress.
Pharmaceutical giants Takeda and Bristol-Myers Squibb stated an LGBTQ+ reporting commitment as part of their health equity program advancements.
It’s clear the pharmaceutical industry still has a mountain to climb before it achieves results from sexual orientation reporting, but we must celebrate each step we make up this steep hill. The clinical trial landscape will remain unclear for some time but in comparison, overall healthcare experiences of LGBTQ+ groups have been widely reported for decades. We know that LGBTQ+ communities experience discrimination in healthcare, in the UK 16% of LGBTQ+ individuals have had negative experiences relating to their sexual orientation[7] when trying to access healthcare services. In 2021 in the US, 8% of all LGBTQ people reported avoiding or postponing medical care due to fears or experience of discrimination[8]. With clinical trials forming one puzzle piece of the healthcare picture, it is likely this discrimination infiltrates these settings too.
As we move towards true health equity, we need to undertake an intersectionality approach to look at which communities need the greatest elevation to the healthcare standard. We see a lot of community engagement efforts for racial and ethnic minorities through religious organizations and we should consider if this reaches LGBTQ+ communities of color and utilize alternative community channels. Health disparities are often exacerbated in these groups with gay African American men being the most likely to die from specific types of lung cancer[9]. Overall, if we fail to pursue engagement with the LGBTQ+ community in clinical research trials, we are maintaining data deficits, and limiting access to potentially life-saving therapies.
Diversity in the Workplace
If we’re unable to create inclusive spaces within our own workplaces, then can we even be sure that the population data received from clinical trial enrolments is accurate? Educating the workforce should be a top priority for companies wanting to build trust with LGBTQ+ communities, we know this is not an impossible ask with Moderna presenting at the Health Equity in Clinical Trials Congress 2023 on their entire workforce health equity education program.
Creating Better Outcomes
We need to consider LGBTQ+ health equity efforts from a community and local level, people will make their healthcare decisions based on their healthcare experiences and our doctors need to be educated on how they consider each individual they treat. With only 43% of LGBT doctors being out at work[11] it’s imperative that we facilitate an inclusive atmosphere in our clinical centers.
If physicians can’t be open about their sexuality than neither will our patients thus acting as a barrier to them receiving the healthcare information they need. We need to see regulatory agencies and governments proactively working towards health equity, or at the bare minimum stop directly contributing to population disparities. Florida’s Gov. DeSantis recently signed the hateful ‘license to discriminate’ healthcare bill that enables healthcare providers to deny patient care on the basis of religious, moral or ethical beliefs. With political determinants of health being a defining factor of health standards, these actions will undoubtedly counteract LGBTQ+ health equity movements and clinical trial diversity efforts.
To answer my question should LGBTQ+ clinical trial representation matter is really a convoluted discussion underneath more broadly – does LGBTQ+ healthcare matter? Our data reporting on LGBTQ+ participation is poor and so making data-driven decisions is near impossible. We need to factor workforce inclusivity into how we collect this data and think about the multi-level factors that underpin the LGBTQ experience in healthcare.
If we can’t enroll a predisposed population into our clinical trials, how can we ever be sure the treatments are getting into their hands? It’s good to see the likes of BMS and Takeda reporting LGBTQ+ participation but to see improvements, it will require whole ecosystem change from a government level down to our community organizations. The rainbow flags we wave this pride month won’t waft away the concrete barriers we face.
LGBTQ+ health equity will be discussed at the Health Equity in Clinical Trials Congress 2024. If you’d like to be involved please contact the Health Equity Lead, George Partridge (george.partridge@kisacoresearch.com). If you’re interested in attending you can register your interest below.