The U.S. healthcare system is arguably the most sophisticated in the world. In the past decade, science has propelled society forward with advancements in targeted cancer therapies to life-saving vaccines. But within the realm of advancing critical care also lies the fragility of improving access, education and clinical trial diversity that work to care for all - emphasis on “all.”
Since the cultural movements of 2020, we’ve witnessed pharmaceutical and biotech companies’ magnanimity in messaging general commitments to increase racial diversity in clinical trials – and rightfully so. In 2019, ProPublica reported merely 1.8% of participants in an active multiple myeloma trial were Black, even though Black Americans are more than twice as likely to be diagnosed with the blood cancer than white Americans.
And while discussions about racial representation continue to permeate national healthcare conversations and inform new policy, our system is decades behind in considering the transgender community into clinical trials and research. It’s time to actualize the verbal commitments made to increasing diversity in clinical trials, and in every sense of the word.
Today, more than two million Americans identify as transgender and 1.2 million identify as gender non-binary. These figures have continued to increase over the years as more Americans embrace gender fluidity. Yet, most clinical trials require participants to identify as either male or female, thus excluding an entire community of participants.
Although some HIV/AIDS and mental health studies have adopted protocols to include transgender and non-binary patients, they are unlikely to make it past the first page of the registration form for most trials, denying access to investigative treatments and erasing the transgender community from medical research. Lack of transgender representation from the clinical research process also renders it impossible for physicians – and their transgender patients – to make fully-informed treatment decisions.
Transgender erasure goes beyond the research process and has impacted all aspects of our healthcare system. According to data released from the largest-ever study of transgender and gender non-conforming people in the U.S., nearly one in five had been refused care outright because they are transgender or gender non-conforming, and half reported having to teach their healthcare providers about transgender care. It’s no wonder 28% of survey participants also reported very high levels of postponing medical care when sick or injured due to discrimination and disrespect – a dangerous and justified coping mechanism in the face of intense discrimination from the medical community.
The situation is most glaring when juxtaposed against similarly regulated industries that have made greater strides towards transgender inclusivity: Mastercard now allows customers to use a “preferred” first name on account profiles and credit cards, and the U.S. Department of State added an “X” gender marker on U.S. passports available for non-binary, intersex and gender non-conforming individuals.
Healthcare companies seeking to actualize their commitments to clinical trial diversity should consider the following:
- Expand (or remove) gender options on clinical trial enrollment forms and modify questions with unnecessarily restrictive criteria that may preclude transgender individuals from participating
- Dedicate resources to understand and address biases in the end-to-end clinical trial experience from recruitment, enrollment, and execution process and offer specialized support for transgender patients seeking participation.
- Promote transgender voices within healthcare organizations and partner with advocacy groups to educate leaders, employees – and ourselves - about transgender inclusion with greater sensitivity and dialogue.
- Support policies and initiatives that promote the inclusion – and rights - of transgender and non-binary people
A leader in healthcare communications, BCW is counseling clients on the current cultural landscape, providing support to develop customized strategies that addresses gender inclusivity. With our 200+ healthcare specialists and Polycultural Consulting Unit, we continue to listen, learn, adapt and support as we reaffirm our dedication to building a more inclusive healthcare system – and call on others to do the same.