The 65th American Society of Hematology (ASH) Annual Meeting & Exposition provided an increased number of abstract presentations from previous years on the topic of DEI and disparity. There is a need for clinical trial patient participation to be reflective of the real world. Clinical trial outcomes may not be as accurate when its patient population is not racially diverse. While studies done in the United States usually display some racial diversity in their study participant population, it is typically not sufficient. The lack of racial diversity in clinical trials is a global issue.

The following points that were communicated resonated with me:

  • Black individuals with multiple myeloma express a willingness to participate in clinical trials, irrespective of their prior trial experience.
  • The motivation behind this willingness is primarily driven by a desire for diverse representation to live longer, and a commitment to helping others diagnosed with multiple myeloma in the future.
  • There is a need for enhanced educational initiatives to address gaps in awareness and perceptions about clinical trials.
  • To ensure equitable access, it is crucial to implement tailored efforts that encourage healthcare providers to adopt an equity-centered approach when offering clinical trials, especially to individuals from underrepresented racial and ethnic backgrounds.

Patients of color often experience a lack of DEI and disparity from the point of pursuing diagnosis to determining a plan of treatment and consideration for inclusion in clinical trials and research studies. The field of hematology can no longer afford to view DEI and disparity as afterthoughts; they must become forethoughts. It is human nature to ignore or avoid what we do not understand.  We cannot continue to do this with people because we stand to lose too much. We are in this world together and we need each other. While we may look different externally, internally we are more alike.

Until we, people of color, take our seat at the table that is serving up clinical trials and research, we cannot expect to know how we will respond to treatments for multiple myeloma that have the potential of improving our quality of life.

The hematology community is doing its part by initiating conversations, education, and implementation of changes in DEI, even though there is room for much improvement. People of color are accountable for doing their part because progress requires team participation. Things did not get the way they are in a day. They will not change overnight. It will take time. We must persevere together in humility. The light may be a little dim as we travel the pathway of progress. I am certain that we will see the unrestricted light of a cure soon!

— Diane Hunter
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