Structural Racism and AML
Explore Cell Therapy podcast season 2, episode 4 recap
In this two-part episode, our expert guests discuss novel research on the impact of structural racism on acute myeloid leukemia (AML) outcomes for underserved communities and ethnically diverse patients in the Chicago area.
The study's principal investigator, Irum Khan, MD, from the University of Illinois Cancer Center, joins Jonathan Moreira, MD, a transplant physician from Northwestern University Feinberg School of Medicine, to discuss the findings and possible solutions for barriers to care and access issues for patients with AML.
The full two-part discussion is now available!
- Part 1: The Impact of Structural Racism on AML Outcomes
- Part 2: Addressing Barriers and Equity Across Health Care Teams
Meet this episode's expert guests
Irum Khan, MD
Hematologist/Oncologist
Associate Professor of Medicine
University of Illinois Chicago
Dr. Khan received her medical degree from the Aga Khan University in Karachi, Pakistan. After a residency in Internal Medicine at the University of Cincinnati in Ohio, she completed a fellowship in hematology/oncology at Northwestern University in Chicago. Dr. Khan focuses her clinical practice and research on treatment outcomes in leukemia. An American Cancer Society grant currently funds her work to investigate mechanisms of resistance in AML. She leads several multi-institutional clinical studies to investigate mechanisms underlying disparities in AML outcomes using a structural racism lens.
Jonathan Moreira, MD
Assistant Professor of Medicine
Hematology/Oncology
Hematopoietic Stem Cell Transplantation
Northwestern University Feinberg School of Medicine
Dr. Moreira is an assistant professor of medicine in the Department of Medicine, Division of Hematology/Oncology at Northwestern University's Feinberg School of Medicine. After receiving dual bachelor's degrees at the University of Illinois at Urbana-Champaign, he returned to his native Chicago, where he received a medical degree from Loyola University Chicago's Stritch School of Medicine. He is triple board certified in internal medicine, hematology, and medical oncology. Dr. Moreira's clinical practice focuses on hematopoietic cell transplantation (HCT) for hematologic and solid malignancies as well as T-cell lymphomas at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. In addition to Dr. Moreira's academic appointment, he is also Northwestern University's Research and Education Core Co-lead for the Chicago Cancer Health Equity Collaborative (ChicagoCHEC).
Part 1: The Impact of Structural Racism on AML Outcomes
In part one of this two-part episode, Dr. Khan presents major findings from her recent study published in Blood. Researchers in this study operationalized the analysis of structural racism using a composite variable incorporating racial segregation, disadvantage, and affluence at the census tract level. Dr. Khan discusses highlights of the research and the current state of health care access for AML in the Chicago metropolitan area with Dr. Moreira.
Novel research suggests structural racism accounts for AML outcome disparities
Dr. Khan starts the episode with rationale and background on this Chicago-wide effort across six academic centers pulling data together to get a sense of real-world factors playing a role in leukemia outcomes. The inspiration came from early looks at data from collaborative studies, particularly larger data sets where race stood out as a negative predictor of outcomes in patients with AML.
Dr. Khan explains they used census tract data, which has been approximated in public health research as a better marker of neighborhood conditions compared to zip code, to compute three variables: census tract disadvantage, census tract affluence, and census tract segregation. The composite variable of structural racism per census tract includes different aspects such as female head-of-household, household income, level of college education, and the level of segregation within the census tract.
A collaborator on the study, Garth Rauscher, PhD, previously provided an example of the composite variable for breast cancer research. Dr. Kahn notes it's by no means comprehensive, but this methodology was used to ask a broader question about what impacts outcomes.
Dr. Kahn shares her and her colleagues surprise of the extent of the structural racism variable. She notes key findings from the 822 patients in the study, including:
- Black patients were doing worse than white patients.
- While Black patients had a higher risk of death than white patients, the disparity could be reduced.
- The structural racism variable fully corrected the disparity, meaning you're equally likely to survive leukemia if from the same census tract. This variable can encompass a lot, like where you live influencing the type of leukemia you develop.
- Many modifiable risk factors can be addressed, such as insufficient access to primary care.
- Other variables, such as comorbidities and mutation types, didn't fix the disparity.
Dr. Moreira agrees and provides insight from his experience in Chicago as a transplant physician. He notes the myriad of barriers for patients that inhibit access to HCT and affect outcomes.
Dr. Khan goes on to discuss the journey from diagnosis to treatment for patients with AML. She notes patients seemingly start off on the same path when diagnosed, but there are clear differences that enter in throughout the process. Dr. Moreira adds that Chicago presents a unique microcosm. He continues to discuss the concept of race being considered a sociocultural and sociopolitical construct, in addition to biological.
Dr. Moreira shares that research like this adds clarity to what sociopolitical and socioeconomic factors shape the following resources:
- Healthy foods
- Distance to transplant centers and tertiary care centers
- Insurance access
- Structural violence
- Physical violence
Challenges across the country for patients needing HCT
Dr. Moreira and Dr. Kahn begin to discuss different barriers to care and challenges faced in other diagnoses. Dr. Moreira reaffirms that it's more than biological factors of disease that impact outcomes in different communities.
In reference to challenges in different parts of the country, Dr. Moreira adds that Chicago is fortunate to have many transplant and academic medical centers among its diverse population. Houston, Texas and rural parts of New Mexico, Mississippi or Alabama face different barriers. Certain parts of the country may not have access to transplant centers or tertiary care centers. Dr. Moreira states historical data shows distance to transplant center has an adverse impact on outcomes for HCT recipients.
Dr. Kahn shares that she, along with her collaborators, are trying to leverage their individual scientific resources to interrogate different aspects of this research. Examples of current efforts include:
- Review of air pollutants and contribution to disease biology
- Looking at individual patient experiences with questionnaires
- Conducting face to face interviews with patients to explore disease journey
- Reviewing aspects of the transition between inpatient and outpatient patient settings
- Studying the geographic distance to the transplant center being linked to outcomes
Dr. Kahn states it's sobering to think that there's a major black-white disparity in transplant for patients with AML, which is one of the most common diagnoses for patients undergoing transplantation. And, despite efforts to liberalize HLA matching with haploidentical donors, umbilical cord blood, and different donor sources, it's not enough. She says they're digging deeper into the data to determine why. She says it would be wonderful to see other centers mirroring this effort.
HLA versus non-HLA barriers for possible transplant candidates
Dr. Moreira shares insight on HLA and non-HLA barriers to transplant from his experience in Chicago, stating that simple solutions can alleviate these issues. He lists the following non-HLA barriers:
- Eligibility criteria for transplant varying by transplant institution
- Lack of social support
- Expensive medications and lack of financial support
- Far distance to transplant center and transportation barriers
- Lack of continuing education for community practices
- Lack of caregiver support
- Linguistic barriers/cultural barriers
Simple solutions could include support for a rideshare or taxi service, cultural competency training for health care teams, and prioritizing a diverse workforce for the patients across a multidisciplinary team. He adds that barriers aren't necessarily a contraindication to transplant but must be met with a joint effort from the team.
Dr. Kahn adds that maximizing caregiver support by working with patients and families can help, being sure not to use the perceived lack of a caregiver as exclusion criteria. Education and assistance for patients and families with work commitments, family priorities, and the realities of transplant can make a difference. Dr. Kahn adds that housing and financial support could provide higher-level solutions.
Part 2: Addressing Barriers and Equity Across Health Care Teams
Listen to Part 2
In part two of this episode, Dr. Kahn and Dr. Moreira dig deeper into barriers to care and health equity concerns for underserved patients in need of HCT. They discuss numerous solutions to improve access and emphasize the importance of provider relationships across the transplant journey. They encourage health care teams to take proactive approaches when addressing barriers, including advocating for policy reform.
The role of provider education and diversity
Part two of this episode starts with a discussion of NMDP programs, with a focus on caregiver education, patient support services, and financial assistance programs. This sparked discussion of the role that provider education plays in the process of overcoming issues of structural racism. Dr. Moreira states the pivotal need for care team members to be aware of barriers, challenges, and obstacles patients face individually and on a communal level.
He adds that the transplant physicians and team members at Northwestern University are culturally diverse, which helps sensitize the physicians to some of the challenges of ethnically diverse patients and proves the importance of diversity among staff. In addition, he notes that many referrals for transplant are based on personal provider relationships, though they may not be the closest center geographically or the best fit. This reinforces the importance of collaboration, especially for complex cases.
Dr. Moreira highlights the benefits for the academic institution to have a ready partner in the community:
- They can learn from the communities not served by the institution.
- They can receive insight and data that can benefit the entire practice of medicine.
A shared care approach to barriers and clinical trials
Dr. Moreira and Dr. Kahn share insights on a collaborative approach to care. Dr. Kahn provides a concrete example of something her team is doing, trying to understand and focus their science on the needs of community members they are serving. She continues to explain their effort to marry community outreach and clinical research to provide a mutual benefit. She acts as the liaison for the transplant oncology group, fostering collaboration by:
- Meeting with advisory boards
- Listening to the community perspective on issues
- Meeting with cancer centers to design grants, funding opportunities or clinical trials that address issues raised by community teams
- Sharing feedback with community teams to close the loop
- Focusing symposia on particular groups of patients in need
Dr. Kahn shares the impact of these endeavors on building trust and creating a bilateral partnership between groups.
Dr. Moreira then addresses the topic of hesitancy for clinical trial enrollment as multifactorial. Some patients may enroll in treatment with a physician because they're involved in a clinical trial, but this method can lead to a bias. He explains that eligibility can be an issue due to comorbidities such as tobacco use, chronic obstructive pulmonary disease or coronary heart disease, even if they're willing and engaged participants. He expresses how this exclusion can lead to mistrust of the system among marginalized communities. He states that it's not enough to be proactive, but we must be open-minded, compassionate and less restrictive in designing clinical trials to be inclusive of these patients.
Dr. Kahn agrees that patients from different communities and ethnically diverse areas can have less trust due to exclusion criteria. She continues that many patients have different signs or symptoms that could possibly be optimized if they are on the edge of the inclusion criteria. Dr. Kahn makes the point that it's essential to review the whole patient and talk through options, be willing to listen, and foster trusting relationships with cultural competency.
Dr. Moreira agrees and shares the example of the pandemic where people with white-collar jobs were able to transition to working from home. However, many essential workers didn't have the same opportunities. He shares that people with working-class backgrounds, single-income households, and caregivers working long hours may not have a job that affords them the resources to undergo transplantation.
Solutions to foster change for communities
Dr. Kahn addresses ideas for change from the community to the policy level. She starts by looking at the leukemia patient's journey, which showed a large disparity in molecular testing. The data showed Black and Hispanic patients had a significantly lower rate of testing. She shares that clear institutional differences and the availability of next-generation gene sequencing aren't always an option for patients, and this process should be democratized. In addition, patients with various levels of testing for measurable residual disease don't always have access.
Dr. Kahn continues to highlight focus areas for change, another being the intensive care unit admission after intensive chemotherapy. She revisits access to transplant as a focus area, noting the research showed Black patients were almost half as likely to get transplanted than white or Hispanic patients.
Dr. Moreira agrees and provides insight into the policy elements of addressing barriers and fostering change. He expresses there are multiple layers of obstacles for patients that lead to worse outcomes. This creates incentives for health care facilities to have ready access to treatment in neighborhoods that need it the most. He discusses other barriers to access that can be addressed at the community or policy level, including:
- Health care centers need appropriate access through transportation via bus route, train or well-designed roads.
- Robust social services are necessary to proactively address barriers such as housing.
- Housing opportunities can be addressed when the right partners collaborate to find innovative solutions.
Dr. Moreira and Dr. Kahn share their hopes for this research to prompt a deeper understanding of the structural racism variable and focus on solutions to provide optimal care for patients.
Listen to Part 2