In this #TalkClinicalTrials blog Munaza Jamil opens up about her mother’s journey through the Canadian healthcare system as a new immigrant, and the urgent need for equitable access to clinical trials.
When my mother was diagnosed with end-stage metastatic colorectal cancer, our lives were upended. Her journey—as a woman of color, new immigrant, with limited English proficiency, and limited resources—through Canada’s healthcare system was fraught with challenges, particularly when it came to accessing clinical trials. This experience revealed a sobering reality: clinical trials, the lifelines of cutting-edge cancer treatment, often remain out of reach for the very populations who need them the most.
Access to clinical trials remains heavily stratified, favoring those with privilege, despite the growing recognition of the benefits of diverse trial participation. My mother’s story underscores this disparity. When we inquired about trials early in her treatment, we were told that none were available in Canada. Although some options were available in the U.S., but they were logistically and financially out of reach for us. Months later, as her treatment options dwindled, we again asked about clinical trials and were relieved to hear that one had opened, in a city hospital one hour’s drive away. But by then, her condition had deteriorated to the point of ineligibility.
Our case illustrates a critical flaw in the system: those who are most vulnerable and least likely to have access to early, alternative treatments often slip through the cracks. Clinical trials, instead of being equitable, are often a privilege extended to those who meet stringent health criteria, have financial means, live in proximity to large hospitals, and can navigate complex systems. This is a harsh reality for low-income, immigrant patients who face multiple barriers, from transportation and language issues to lack of health literacy or even awareness of these trials.
Immigrant patients often rely on family members as translators, caregivers, and advocates, roles that in themselves are taxing. For instance, to support my mother’s potential participation in a clinical trial, I would have had to manage her language needs, coordinate her transportation to a hospital an hour away, and help her navigate every step of the process—all while balancing my full-time job and caregiving responsibilities. The burden placed on families of trial participants can be overwhelming and, ultimately, exclusive.
Scientists must redesign clinical trials to be more inclusive and accessible to address health disparities effectively. Enhancing outreach and education within immigrant and low-income communities, where knowledge about trials may be limited or mistrust may exist, is essential. Furthermore, trials should offer logistical support such as transportation, language services, childcare, and flexible scheduling to ensure participation is feasible for diverse populations.
Equitable access to clinical trials is about ensuring that all patients have the dignity of choice. My mother may or may not have benefitted from a trial, but she deserved the option to try. Improving access to clinical trials would not only serve individual patients but would strengthen the overall healthcare system by fostering diverse and inclusive research that ultimately benefits all of us.
#TalkClinicalTrials is a campaign led by CTO with the goal of building awareness around clinical trials. Why? Because clinical trials matter to all of us. They help to generate better treatments and technologies and ultimately help shape the future of medicine. Explore more stories from the series and join the conversation on social media using #TalkClinicalTrials.