Last July, my friend Lauren,* who is also a physician, called to tell me her 62-year-old aunt was just diagnosed with multiple myeloma. The diagnosis came after six frustrating visits to an emergency room in the heart of a bustling metropolitan city, for the complaint of worsening back pain. I reviewed the testing with Lauren on a long Friday evening phone call and outlined the typical induction regimen and supportive care management. Two months later, Lauren’s aunt still hadn’t started any therapy. The excruciating back pain remained untreated. Aside from the lack of palliative care, I had so many questions: What about vertebroplasty, wasn’t that an option? Why hadn’t she started plasma cell therapy? Why was it so hard to speak to a physician about her care?! It felt like we were in a twilight zone — or had travelled back in time by 30 years! Two months later, I learned that Lauren’s aunt had passed away, having received only one full cycle of induction therapy. A myriad of feelings swirled inside me upon hearing the news, but the undeniable top notes were sadness, defeat, disappointment, and anger.
Those of us who treat plasma cell disorders know the statistics. Multiple myeloma (MM) affects Black people two to three times more commonly and at younger age than white people. The genetic profile appears to demonstrate fewer high-risk features and high prevalence of a standard risk cytogenetic feature (t(11;14)). However, they have the least access to novel therapies, poorest outcomes and highest mortality when compared to other groups. This and more will be discussed in today’s Spotlight Session, Tackling the Greater Burden of Multiple Myeloma in African American Patients (4:30 p.m.–5:45 p.m., Convention Center, Room 6B), with Yvonne Efebera, MD, MPH, and Srinivas Devarakonda, MD, both plasma cell experts and clinical trial stalwarts.
Dr. Efebera comprehensively reviews the differential landscape for MM in African American patients: the genetic and biologic differences, structural barriers, and the huge socioeconomic disparity marked by high poverty, low health literacy, lack of social support mechanisms, and lack of access to health insurance and primary and specialist healthcare. “All these factors lead to delayed detection, and suboptimal treatment,” she said. “However, when these variables are equal, the outcomes in Black patients are just as good [as] in white patients, if not better. Right now, African American patients are 40% less likely to be referred for transplant and hence less likely to be get one with an odds ratio of 0.66.”
Dr. Devarakonda outlines common barriers faced by African American patients with MM. The paucity of clinical trial options in African American communities results in limited awareness. He stated that implicit provider bias which assumes that African American patients “would not be interested in clinical trials,” or that “they wouldn’t be compliant” is another major hurdle to overcome. He pointed to clinical trial eligibility criteria which did not consider race-specific variability in labs and excluded patients with co-existing medical conditions. To pragmatically address those barriers, he underscored the community level effort urgently needed to increase awareness and clear misconceptions about clinical trials. Dr. Efebera advocates for increased social worker support in the communities, educating community treatment teams, encouraging routine primary care and teaching the community about the benefit of clinical trials. Drs. Devarakonda and Efebera propose strategic clinical trial site selection to include cities enriched for Black patients and recommend the appointment of a Diversity Task force to ensure equitable and proportionate recruitment. “Consider making community hematologists/oncologists sub-investigators on the trial and co-authors on manuscripts to provide further incentive for active patient enrollment,” Dr. Devarakonda added.
Over the next five to ten years, Dr. Efebera hopes to see (1) improvement in recruitment of African American patients to at least 10%, (2) larger support by sponsoring pharmaceutical companies to provide robust community level clinical trial support, and (3) better social work and nurse navigator access within these communities, to assist with transportation to clinical trial appointments and grants for medication coverage. This Spotlight Session review will offer a practical roadmap so that each of us can effect change for our myeloma patients, whether in community practice or academic centers.
As I practice as a myeloma physician myself, and treat patients from different walks of life, I frequently reflect on the experience of Lauren’s aunt, and check myself for biases in my practice; we all have them. I feel privileged to be practicing in this era and I know we’ve come so far in improving care, access, and awareness of disparities, but with respect to actualizing health equity for all, we still have miles to go.
Dr. Cook indicated no relevant conflicts of interest.
*Name has been changed to protect confidentiality and identity.