My attendance at the 64th Annual Society of Hematology Annual Meeting, in New Orleans, LA, 12/9-12/2022 was an amazing experience. As a first-time attendee, I was at times overwhelmed because the target audience for the information presented was medical professionals, researchers, and educators. Being in the right place at the right time is an opportunity to receive what is meant for you. This was my time!

I wanted to return from my ASH22 experience with amazing and hopeful information that I can share with patients and others that are hopeful and would benefit from encouragement. I can say mission accomplished!

I found great value in the information communicated at the education session that addressed disparity in health care for people of color, diversity, and inclusion in the field of medicine, clinical trials, and research. It is my opinion that the education sessions appear to be less overwhelming and lend themselves to topics that a first-time attendee will absorb more beneficial information from.

Information was discussed about the persistence of racial disparities in medicine and how it spills over into interactions and patient management. I felt that this applied to me.

I am pictured here thanking the presenters for being invested in having the uncomfortable dialogue about these issues. As a five-year Multiple Myeloma (MM) survivor, it was emotional sharing my personal story.

Leading up to my MM diagnosis, the major frustration I experienced is that my Primary Care Physician (PCP) did not listen to me. I provided him with a copy of my blood work results from my annual check-up for hypothyroidism. It indicated that I had protein in my blood and noted consideration of referral to a hematologist. His response was that it was not enough to be concerned about. When I began experiencing back pain, he prescribed pain medication in varying strengths for pain management. When I repeatedly asked to be referred for an MRI as an effort to identify the cause of my back pain, his response was that I did not need one. I eventually advocated for myself and saw a chiropractor that immediately confirmed the multiple compression fractures in my vertebrae via an MRI.

I trusted my PCP with my physical wellness and he violated that trust. I have often thought about what would have happened if “I” did nothing. It is essential that patients understand that they are a part of the team that provides their medical care. They should have a voice.

Dr. Luciano Costa from the University of Alabama in Birmingham Hospital, apologized for my experience with m PCP and recognized how patients’ trust can be fractured. This was healing for me as my PCP never apologized for missing the opportunity for early detection. This was a powerful exchange for all that were present.

Highlights from the presentations:

  • Exponential increase in high school, college and medical students interested in hematology/oncology.
  • Funding resources are beginning to require that studies and clinical trial participants are representative of the population in appropriate numbers (not percentage of participants which has been done on a limited basis).
  • While diversity has many benefits, the main one is perspective because of individual contributors’ respective experiences.
  • Many resources already exist that will help us to move forward with addressing these concerns. The appropriate people must be invested in using them and not be focused on being politically correct.
  • Adding diverse people resources must include treating them and seeing them as valuable to the cause, or they will choose not to stay.
  • “Diversity must be a forethought, a constant thought, not an afterthought” as stated by Dr. Rayne Rouce from Baylor College of Medicine, Texas Children’s Hospital.

There is still a lot of work to be done in these areas. It did not get this way overnight. The necessary changes will not happen expeditiously: however, time is of the essence!

This experience will allow me to share so much more hopeful and encouraging information. As the explosive evolution to the landscape of the pathway to a cure for MM continues, the synergy of diversity and creative minds lets me know that globally we are in a season of change and building. The future looks amazing!