Studies ‘urgently needed’ to understand social factors in blood cancer disparities
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Social determinants of health for children and young adults with leukemia and lymphoma must be researched as much as the diseases themselves to improve care, according to a presenter at ASH Annual Meeting and Exposition.
Black and Hispanic patients with Hodgkin lymphoma, acute lymphoblastic leukemia and acute myeloid leukemia have historically presented with advanced stage disease or died after relapse at higher rates than white patients, Justine M. Kahn, MD, MSc, a pediatric oncologist at Columbia University, said.
Kahn believes these disparities in access and other non-biological factors will become exacerbated as medicine improves.
“As our drugs and interventions become more and more advanced, history tells us that survival gaps will worsen, meaning, no matter how targeted and how advanced our treatments are, people who don’t have access, for whatever reason, will never benefit,” Kahn told Healio.
During a presentation on health equity at ASH, Kahn explained how social determinants of health impact outcome disparities for patients with hematological malignancies. She provided Healio with a preview of the discussion and explained what steps are needed to improve care for underserved populations.
Healio: What is the most important take-home message for attendees of your presentation?
Kahn: In the management of blood disorders, understanding and addressing a patient’s social needs can be as important as understanding and addressing their disease biology.
Healio: How do novel immunotherapies, molecularly targeted treatments and the diagnostics that accompany them impact outcome disparities?
Kahn: It is all about access. Broadly, patients can access novel therapies if they enroll in early-phase clinical trials or if their insurance covers the often-exorbitant price of the drug or treatment. We know, however, that socially disadvantaged populations are often under-enrolled in clinical trials — especially early-phase trials — and that they are more likely to be enrolled in health insurance plans that place restrictions on covered services and interventions.
Healio: Is there a disease or patient population that stands out as being especially vulnerable to the impact that social determinants ofs?
Kahn: In terms of blood disorders, we have found that non-Hispanic Black and Hispanic patients with Hodgkin lymphoma are more likely than white patients to present with advanced-stage disease and that they are more likely to die after relapse. Similar findings have been reported in patients with ALL and with AML both within and outside of the clinical trial setting, and regardless of insurance or treatment. These outcome disparities, which I would argue are largely driven by inequities in access to high-quality and timely care, are rooted in both historic and contemporary systemic racism operating at multiple levels.
I want to be careful when talking about specific vulnerable populations. Disparities are often framed as an issue of race, yet race is a sociopolitical construct reflecting systemic inequities experienced by a person over their lifespan. Meaning, it’s not actually someone’s race that is the driver of disparities. It’s not a biological distinction that we’re talking about here. There are myriad socioeconomic, cultural and political factors that drive disparities, and those factors need to be addressed.
Healio: What is the biggest single change to the current clinical trial framework you would make to help close the disparities gap for underserved populations?
Kahn: Simplify the trials. Make it easier for people who are historically excluded from science to participate and benefit from the process of discovery.
We need to consider, for example, the position of someone with leukemia who lives in a rural community, miles from the nearest academic hospital. If it were you, would you travel six hours to a center just because they are offering a trial? What if you had a local doctor who could offer you some standard therapy just 20 minutes away? What if you couldn’t afford to miss those days of work? Or those paychecks? These are the patients who are being left out because these barriers are insurmountable in many cases.
I believe that if a company is seeking FDA approval for a new drug, it is their responsibility to ensure that the trial can be run at a small center, whether that be by staffing the center with research coordinators or by enabling remote monitoring, for example. Aside from expanding access to new treatments, this would make trial results much more generalizable.
Healio: What actions can oncology clinicians take to account for social and structural determinants of health when providing patient care?
Kahn: The first step is to be aware of how socioeconomic factors can impact someone’s care and outcomes. We have found that patients are often reluctant to share their financial concerns with their doctors. Often, they do not feel that it is our job as physicians to help them manage things other than their cancer treatment. However, given there is so much evidence linking social disadvantage to suboptimal cancer outcomes, I would argue that it is, in fact, our responsibility to address these needs, or to at least recognize the role they’re playing in a person’s care experience.
Healio: Is there anything clinicians can do to help close the ethnic/racial disparities gap, either from a research or clinical care perspective?
Kahn: Research studies are urgently needed to understand the socio-contextual factors driving these disparities. Clinicians should also focus efforts on integrating social needs assessments into our everyday practices, because we now know that biology is only one part of the story.