Overall: As with every ASH, we are able to witness up close and personal the exciting advances in science and medicine – the research moving us more and more towards precision medicine, the current clinical trials (phases I, II, and III) and the medications approved by FDA for first-time use, first-in-class, or for use in different combinations. As patients/caregivers, this provides incredible hope that a cure or treatment for our individual kind of myeloma is on the horizon. More on this later.
We are also aware that myeloma is just one of several blood diseases that are a part of hematology research and presentations at ASH. Progress in research in leukemia, lymphoma, and sickle-cell anemia, among others, are reported. Even so, this year, of the more than 3,000 abstracts (research projects) accepted for presentation over the four days of the conference, over 1,041 of them were about multiple myeloma! Each year, the number and percentage of myeloma abstracts have grown, and we are the fortunate beneficiaries. With all this great research, each presenter has just 10 minutes to share years and months of work with discerning colleagues. Amazing! I hope to be as successful in summarizing my reflections of the ASH 2022 Annual Meeting from my perspective.
New drugs, and drug classes. We heard about the important new drugs. Myeloma patients should feel confident that there is ongoing research to cure myeloma – both nosed, and those who have relapsed or are refractory even after several different regimens. I will not deign to try to discuss or explain the mechanisms of some of the newer medications. I will mention them here and encourage you to follow up with your expanded vocabulary in other places, starting with the annual summary provided by patient advocate and Conference attendee, Jack Aiello.
At last, year’s ASH meeting, CAR-T cell therapy was at center stage. The two approved therapies were Idecabtagene vicleucel (ide-cel, Abecma) and ciltacabtagene autoleucel (cilta-cel, Carvykti) are CAR T-cell therapies that target the BCMA protein, which is found on myeloma cells. There was so much success with CAR-T that some discussed it replacing ASCT. Always progressing, this year’s “new kids on the block” were the new bispecific antibodies, BCMA – with two sites they can bind to on the tumor cell. Teclistamab is a bispecific BCMA (B-cell maturation antigen) directed CD3 T-cell engager used for the treatment of relapsed and refractory myeloma (FDA-approved in October 2022). Results from Phase I Clinical Trial, Majes-TEC, were reported — using Teclistamab in a different way, using existing drugs Daratumumab and Lenolidomide. Even after a drug is approved for one use, the research continues. Talquetamab is a bispecific antibody against CD3 and GPRC5D, redirects T cells to mediate the killing of GPRC5D-expressing myeloma cells. Elranatamab, a BCMA targeted T-Cell Engaging Bispecific Antibody, could be the next FDA drug approved in this category. Please take the time to learn more about these bispecifics and discuss in your Support Groups. They may be the next best therapy for someone you know
Patient-centeredness. I was impressed that though Adverse Events (AE) (or side effects) are always reported, this year there seemed to be a more balanced discussion about the individual patient’s quality of life while on that therapy. There was research and discussion about reducing or eliminating dex(amethosone) from some regimens. “Down with dex” chant started by Dr. Joe in a few presentations. There is also research on how much maintenance therapy one might need. When can it stop? This would mean for the patient a possible decrease in the medication an individual patient might need over a lifetime. We know every myeloma patient is different, and many will need long-term maintenance therapy, but what can determine if we no longer need any medication? There is a level of comfort in knowing research is also being conducted on the discontinuation of medication, when appropriate.
We are always excited to see and hear from veteran researchers/scientists, but it was clear they are grooming the next generation of new myeloma scientists they are mentoring through the process. We are in good hands for the future.
Recognition that there is racism in science and medicine – among trainees, patients, and practitioners
Diversity, Equity, Inclusion, and Justice
Race, disparities, and Myeloma: For almost every person who is diagnosed with myeloma and goes to the Internet to learn more about the disease, we see that myeloma occurs at least twice as common in Blacks as in Whites, and is also twice as deadly. The research being reported at ASH for so many years, the research did not reflect this fact. This is beyond anything to do with social justice, it is about genetics, the science, what are the biological determinants of myeloma, and how we save lives based on that biology. It makes sense that all race/ethnicities would benefit from research in this area. Interestingly, there is exceptional research and results coming from the iSTOPMM study in Iceland where most of the adult population has consented to a long-term follow-up, almost exclusively White, population study in myeloma. Some comparisons are being made to the Promise Study to provide answers to a majority African American population (https://www.enroll.promisestudy.org/).
Health Equity. In ASH 2021, I was impressed and excited that there was a Health Equity Studio. Virtually, this was a 20-30 minute presentation and discussion of various issues where implicit or explicit biases might impact medical research or practice. Those sessions were sandwiched between the main conference sessions. This year, the Health Equity Studio topics were enhanced with various facilitators, additionally, there were educational sessions that also addressed racial disparities in research, treatment, and outcomes. There were panels on solutions to disparities in clinical trials. Additionally, there were pre-recorded deliveries, called “Blood Drop” from individuals on their experiences with both positive and negative on racism and some possible solutions to health equity issues, such as creating and making accessible opportunities to recruit and retain more people of color in hematology research and practice.
Clinical Trials: An educational session entitled, “Underrepresented minorities in clinical trials for hematologic malignancies”, Strategies to overcome bias, How to recognize and overcome Implicit bias, and Overcoming Disparities in Career Development. All these additional sessions represent a multipronged approach to the acknowledgment, recognition, real-life examples, and open discussion on possible solutions to issues or racism, bias, and implicit bias in health and medicine.
Additional Highlights. I was one of many who was excited to be in the audience for the first-ever ASH session on nutrition, moderated by the inimitable Urvi Shah, MD. For our Support Group, nutrition is one of the most popular topics – what is within their power to control myeloma, and answering the question, …” so what can I eat?” Some of the research results showed that doctors reported patients would not change even if they were prescribed a healthy diet. This should certainly be revisited. Through the evidence presented on a whole food plant-based diet, variables like anti-inflammation, and obesity were major considerations, and it would be great if providers could share this research with patients/caregivers. Many will have been happy with the “Down with dex” chant, started by Dr. Joe. Patients/Caregivers should know there are those seeking diligently to reduce unnecessary medications in our regimens, but it must be deliberate and individualized. In research, adverse events are high on the reportable outcomes list. There are those who are looking at the quality of life in conjunction with the adverse events to determine appropriateness for each patient.
Being able to attend the ASH22 meeting virtually with other IMF Support Group Leaders was a phenomenal experience. Being able to interact with them daily and hear how they were impacted by presentations was an important part of the experience. We all know this is an expensive endeavor and thank the IMF leadership for the opportunity. We are so grateful to our financial sponsors, Amgen, Karyopharm, and Takeda, for their support. We, as Support Group Leaders, we take the knowledge we gain and share it with members of our Support Groups, and our oncology providers, as well. Thank you.