Research at ASH 2023: Health Equity and the Patient Experience
Insights from the 2023 American Society of Hematology annual meeting
By Dr. Joseph Mikhael, IMF Chief Medical Officer
The annual meeting and exposition of the American Society of Hematology (ASH) is truly an amazing experience. The December 2023 meeting brought together more than 32,000 registrants, of whom over 28,000 attended in person in San Diego, California. ASH is the largest gathering in the world that is dedicated to blood, and myeloma is a critical part of this field. Indeed, out of over 7,500 research abstracts submitted to ASH, more than 1,000 abstracts were dedicated to myeloma.
In this edition of Myeloma Today, you will find an article by Dr. Brian G.M. Durie that serves as an overview of some of the top research presented at ASH that focuses on the diagnosis and treatment of myeloma. In this column, I would like to focus on the amazing work being done in two areas: research related to health equity and to the patient experience. Both areas of research are growing in myeloma as we seek to overcome dramatic disparities and as we study the importance of patient engagement, quality of life, and support in the myeloma journey.
Equity in healthcare
It is a sad reality that a Black patient diagnosed with myeloma will live only half as long as a White patient. This is a complex issue that is rooted in many causes, including the social determinants of health, the healthcare system, delayed diagnosis, and reduced access to myeloma therapy. More than 20 abstracts at ASH were dedicated to health equity, highlighting both the extent of the problem and potential solutions. As you are reading Myeloma Today in electronic format, clicking on the hyperlinks will take you to the corresponding resources.
Accessing the healthcare system is part of the problem. Reduced access can lead to delays in seeing a hematologist (abstract #910). Reduced access results in poorer outcomes (abstract #493). Both of these findings emphasize the need to enhance access to treatment for all patients. This is not only a historical problem but also an ongoing one.
Amy Pierre, member of the IMF Nurse Leadership Board (NLB) presented an abstract noting reduced access to CAR T-cell therapy and clinical trials in African American and Hispanic American patients (abstract #2399). A fascinating abstract titled “to Represent a Black Point of View” demonstrated the importance of talking to patients about clinical trials, especially those who have historically been underrepresented (abstract #1065).
I also found it interesting that other factors can also affect survival in myeloma, such as education level and household income; this was even seen in a publicly funded healthcare system in Sweden (abstract #4723). Financial “toxicity” from the cost of drugs and lost productivity is a dire problem in myeloma as demonstrated by Dr. Banerjee (abstract #2386) to be associated with a lower income.
Lastly, there were two abstracts presented by medical students who participated in the IMF Student Scholars for Health Equity in Myeloma inaugural program in 2023. Semaje Testamark won an abstract achievement award for analyzing trends in survival of myeloma patients based on race, ethnicity, and location (abstract #1977)! Yaw Adu also presented research that noted disparities in awareness of the newer treatments available for myeloma such as CAR T-cell therapies and bispecific antibodies (abstract #2418).
Patient-centric research
Although all research is meant to be patient-specific or “centric,” there were dozens of ASH abstracts that really focused on the patient experience. I will comment on three specific areas: reducing dexamethasone (dex), quality of life, and patient reported outcomes (PROs) and the CAR T patient experience.
One of my favorite abstracts reflects my #downwithdex approach of reducing the dosing of dexamethasone more rapidly than historically customary due to the side effects that patients experience (abstract #1066). This study analyzed two large clinical trials and showed that reducing dex did not have a negative impact on patient outcomes. So… let’s Dial Down the Dex!
As patients are living longer with myeloma, there is an increased interest in measuring and improving their quality of life. It is very gratifying to see large trials incorporating these measures, including the KarMMa-3 clinical trial (abstract #96) and the CARTITUDE-4 clinical trial (abstract #1063). This is tremendously important. As I often say, I do not treat myeloma, I treat people!
It was fascinating to see how many studies used innovative means to improve the patient experience with CAR T-cell therapy. These included CAR T as an outpatient procedure (abstract #253), providing an educational video prior to CAR T-cell therapy (abstract #255), and using a wearable device to monitor patients (abstract #1007). Lastly, arguably the most patient-centric abstract was one that was co-authored by Yelak Biru (IMF President & CEO) and provided a patient, caregiver, and provider perspective on cytokine release syndrome (CRS) (abstract #3718).
All in all, the past year was an incredible one for myeloma research. I have been privileged to be working in myeloma for over 20 years, and I can honestly say I have not seen a more exciting time in myeloma than right now.
Stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Thursday, and 9 a.m. to 2 p.m. on Friday at 1.800.452.CURE in the U.S. and Canada and 1.818.487.7455 worldwide. To submit your query electronically, email [email protected].
(This article was published in the 2024 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)