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Winds of Change: Diverse Perspectives for Inclusive Care

November 12, 2023
Joselle Cook, MBBS, (@JoselleCookMD)
Division of Hematology, Mayo Clinic, Rochester, MN

The rapid pace of drug approvals of new and novel therapies for patients with hematologic malignancies is simply mind-boggling. There have been three new bispecific antibodies endorsed for multiple myeloma, and two for diffuse large cell lymphoma in the last year alone. By the time of our 65th ASH Annual Meeting and Exhibition, we could hear of Food and Drug Administration (FDA) approval for the first-ever clustered regularly interspaced short palindromic repeats (CRISPR)-Cas9 therapy with exagamglogene autotemcel for patients with sickle cell disease. One can’t help but be excited and hopeful for improved patient outcomes with all these novel treatments at our fingertips. 

That enthusiasm unfortunately must be tempered by a dose of reality. The question to now ask is who can receive these treatments? The disparity between those who need these novel therapies and those who can access and afford them is troubling. The crux of the issue is that patients who can enroll on clinical trials have an element of privilege to some measure. Either they have access and transportation to an academic center, or have the time, family support, and/or financial means to comply with the rigorous clinical trial schedules.   

While these considerations are sobering, there are yet further variables that exacerbate the disparate access to novel therapies. Could we, as clinicians, possibly not refer some patients to clinical trials due to implicit biases? How do the inclusion/exclusion criteria bar certain groups from registering in trials? Are the results from trials studied in homogenous populations generalizable? How can we increase the education and awareness for both patients and physicians in the community to increase clinical trial participation? How can we continue to decentralize trials for better access for all?  

In recognition of these gaps in our health care delivery, ASH has specifically dedicated time, resources, and funding to improving access to care for all. I encourage you to attend the Special Interest Session Race and Science: Bench to Bedside to the Community on December 10. Race as a scientific descriptor is controversial, given its historical foundations as a social construct, which could potentiate discrimination and biases. A new framework for population descriptors was proposed by the National Academies of Sciences, Engineering, and Medicine in March 2023. 

However, despite these redefinitions and reclassifications, race as we know it still plays a huge role in how resources are allocated to historically and present-day underserved groups. Alisa S. Wolberg, PhD, a professor of pathology at the University of North Carolina at Chapel Hill, will be one of the speakers at the December 10 session. She said that she ensures there is diverse representation in her laboratory workforce. “It is only with a diverse workforce can we think about and try to solve problems that will have impact across populations,” she noted. 

We can also expect to gain valuable insight from Saad Z. Usmani, MD, a prolific myeloma clinical trialist at Memorial Sloan Kettering Cancer Center in New York, regarding his experience. He acknowledged that diversity, equity, and inclusion (DEI) in the clinical trial space requires a multipronged approach. He will discuss how he and his team have decentralized clinical trials to community sites for improved access and highlight the cultural education and training his team undergoes to respectfully approach diverse groups of patients. He has said of his clinical practice, which focuses on equitable care, “I ensure that with every patient both standard of care and clinical trials are carefully discussed.” 

Nicole Gormley, MD, will review the recent FDA guidelines which ensure diverse patient populations are represented in clinical trials and discuss the definitions and considerations for underserved and disadvantaged populations beyond definitions of race and ethnicity. Finally, Shonta Chambers, MSW, from the Patient Advocate Foundation, will give the community and patient advocate perspectives.  

The Scientific Workshop Defining Goals and Utilizing Tools for Enhancing DEI In Clinical Trials in Hematology on December 8 will explore the use of tangible and practical tools to ensure that diverse populations are represented in clinical trials. This process starts with the identification of stakeholders in the community and patient liaisons to ensure that even before trial inception, recruitment strategies are built into the design. Here, we will learn the nuts and bolts of how DEI is woven into the framework of the trial, rather than being an afterthought. I encourage both budding and established clinical trialists to attend this critical session chaired by Arushi Khurana, MBBS, and Alan Mast, MD, PhD.   

Check out the Wake Up To DEI Networking Breakfast, hosted December 11 by the ASH DEI Programs Subcommittee. This will be a fun event and a fantastic opportunity to discuss experiences, brainstorm ideas, and connect with the clinicians, community leads, and liaisons. I can’t think of a better way to meet all those with a vested interest in advancing DEI efforts within the ASH framework.   

Lastly, the virtual ASH Poster Walk on DEI in Hematology on December 14, is an opportunity to view the full scope of research that puts the spotlight on diverse patient populations and underserved communities.     

The gamut of activities should not dissuade any of our colleagues with disabilities. ASH is committed to ensuring an equitable experience for everyone, and resources are available to assist anyone with additional needs. The ASH DEI Toolkit is a hidden gem available on the ASH website. The upcoming ASH annual meeting truly will be the premier “all-inclusive event,” and these DEI sessions will enrich our understanding of the importance of these issues, as well as our understanding of how they can improve patient care and health outcomes.  

Dr. Cook indicated no relevant conflicts of interest. 

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