Welcome to FNEI Insights, the FiscalNote Executive Institute’s monthly thought leadership blog where we interview executives about top issues affecting companies, including ESG and sustainability; diversity, equity, inclusion, belonging, and accessibility; technological innovation; global risk, and more. This month, we spoke with Samantha Good, Vice President of Global Alliances, and Tinamarie Duff, Disability Advancement Workplace Network (DAWN) Global People & Business Resource Lead both at Bristol Myers Squibb, about the importance of promoting disability rights.
There is no question that the American with Disabilities Act (ADA) was a huge step forward in disability rights. Passed more than 30 years ago, the ADA is one of America’s most comprehensive pieces of civil rights legislation that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. Add to that the rising focus on corporate DEI in recent years, and one might assume that we’ve closed any serious gaps, especially in major sectors like healthcare.
While there has certainly been progress, the sobering reality is that disparities remain, and people with disabilities are often denied equal access to healthcare services that could substantially improve their outcomes. This has been especially true in the area of clinical trials.
“This type of exclusion isn’t uncommon for people with disabilities,” said Samantha Good, Vice President of Global Alliances at Bristol Myers Squibb (BMS). In fact, common clinical trial practices exclude up to one-fourth of the U.S. population based on disability status, Good says. As a person who suffered a spinal cord injury in 2019, this initiative is important to her personally and professionally.
“A study published in the Journal of the American Medical Association in 2018 showed that among 338 phase III and IV studies, explicit exclusion criteria was found in 12.4 percent for people with intellectual or developmental disabilities and in 1.8 percent for those with physical disabilities,” Good explains. “This statistic does not include those implicitly excluded from clinical trials because of inaccessible trial sites, medical equipment, ableist biases, and simple lack of data about the disability community — all of which keep them away from potentially life-saving treatments.”
Tinamarie Duff, Disability Advancement Workplace Network (DAWN) Global People & Business Resource Lead at BMS, believes that these factors demonstrate the distinct need for increased inclusion in clinical trials for the disabled community. “By specifically working to include people with disabilities in our clinical trials, we can ensure that our science and research better reflects the patient populations most impacted by the diseases we treat, in addition to enhancing health equity and patient outcomes for people with disabilities, who are often in poorer health than their non-disabled peers,” Duff says. “Diversity in clinical trials is both a social and scientific imperative.”
Moving the Needle Forward
In an effort to make real change, BMS recently announced the launch of its Disability Diversity in Clinical Trials (DDiCT) initiative. Created in collaboration with non-profit organization Disability Solutions, the multi-phase initiative aims to remove both implicit and explicit bias within the clinical trial ecosystem so that people with disabilities can participate and, even more so, benefit from them.
In its first phase, the DDiCT will examine each point of the clinical trial journey to identify areas in which bias or exclusions could occur. Based on the findings, BMS will then make recommendations on how to effectively improve access, engagement, speed of enrollment, and participation of people with disabilities in clinical trials.
“The findings from Phase 1 will be the foundational knowledge that BMS can then use to design clinical trials that are designed to mitigate bias at each juncture for people with disabilities — from design to implementation,” Lorena Kuri, director, Clinical Trial Diversity Strategy at BMS, explains.
This type of data has never been collected, according to Kuri, and the hope is that it will advance DEI discussions and create awareness around the many inequities that still exist within healthcare for people with disabilities. “There is a need for inclusion in healthcare settings for people with disabilities, and it exists in every aspect of the medical community,” she says. “By electing to create clinical trials where people with disabilities can participate, BMS can contribute to eliminating just one of the multitude of barriers in healthcare inequity between people with disabilities and their non-disabled counterparts.”
A More Inclusive Future
The DDiCT initiative is part of BMS’s broader Global Inclusion and Diversity strategy, which focuses on addressing health disparities, supplier diversity, employee giving, and workforce representation.
Duff says far too many companies overlook disability when it comes to discussions around inclusion and diversity. “It is often left out of the conversation because although it is one of the largest dimensions of diversity, people tend to have their own image or definition of disability,” she explains. “People often view very specific types of disability that include mobility, physical, intellectual, or learning disabilities. When you factor in myths and stigma that often prevent people with disabilities openly discussing their lived experiences, it can be easily overlooked even though approximately 70 percent of disabilities in the workplace have non-apparent disabilities.”
Over the years, Duff says BMS has come to understand that diversity goes beyond visible representation, which puts the company in a position to make real change, starting with clinical trials. “For us to better serve diverse populations, increasing clinical trial diversity is paramount,” she says. “Our science and research will better reflect the patient populations most impacted by the diseases we treat, ultimately helping to improve treatment and patient outcomes for underserved communities, with narrowing racial and ethnic gaps as our starting point. People with disabilities are a global community of 1 billion people who are members of every race, ethnicity, gender, religion, and [sexual] orientation around the world.”