We Need More Young Adult Representation in Clinical Trials
By Peyton Agard Miles
As a 21-year-old young adult patient living with several chronic and rare conditions, clinical trials have often felt like a double-edged sword. While they have the potential to bring new and effective treatments to the people that need them most, I find myself feeling frustrated because certain criteria often excludes me from applying to enter trials, one important factor being age. What I really want to focus on, though, is not just access to trials, but the lack of young adult representation in the data that comes from them. The National Institutes of Health data on age at enrollment in clinical research reported that 18-34-year-olds accounted for 19.5% of enrollment in Fiscal Year 2021. This data shapes decisions made by organizations, pharmaceutical companies, and even the government about our health, and yet, the young adult perspective is rarely reflected in it. The data used to make decisions about public health, often is not completely representative of the young adult patient experience.
Ages 18 to 34 are full of change, which include hormonal, physical, emotional, and major life changes. It’s a stage where so much happens, yet we’re often categorized in the same grouping as a 65-year-old. However, this isn’t true for other age groups, people under 18 are grouped together as ‘adolescents’, people over 65 are grouped as ‘older adults’, and then everyone 18 to 65 is lumped into the ‘adult’ category. That completely ignores what it means to be a young adult patient. I find that really frustrating, because it means when decisions are being made about treatments or policy, the lived experiences of people in my age range are not actually being considered. For example, the Food and Drug Administration’s Adverse Event Reporting System (FAERS), the public dashboard for reporting negative reactions to drugs or biologics, reports adverse reactions for young adults in the 18-65 age range. As our nation’s primary system for reporting negative/adverse reactions to medications, we need a more representative way to disaggregate the data sets. This system does not support young adult patients if key trends and conclusions about efficacy and safety are made by grouping young adults in the 18-65 range.
Clinical trials come with risks and patients have to do their own cost-benefit analysis if they choose to participate in a clinical trial. But I believe that young adult patients can use participation in clinical trials as a means to advocate and create more accurate and representative data. In 2019, 53.8% of adults aged 18─34 years had at least one chronic condition, and 22.3% had more than one condition. We have the potential to make a huge impact in the clinical research field. The more of us who participate when able, the better the data becomes, and the more it reflects the lived-experience of our peers. That helps other young adult patients make more informed decisions about their health and to advocate based on data that is more representative of our experience.
So much about healthcare can feel out of our control, especially when living with chronic or rare conditions. But pushing greater representation in clinical trials and for disaggregated data, data that accurately represents the young adult patient experience, we can help change this landscape. More accurate data means better understanding, and that, in itself, can be a source of control in an environment that often feels out of our control.
