Addressing Racial and Socioeconomic Disparities in CLL Care


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In an interview, Ira Zackon, MD, emphasized the need for community-based, inclusive care, and the importance of utilizing technology to address disparities in the modern era of chronic lymphocytic leukemia treatment.

Ira Zackon, MD

Ira Zackon, MD

Recent findings suggest an association between race and socioeconomic factors with disparities in chronic lymphocytic leukemia (CLL) outcomes. Notably, a presentation at the 2023 American Hematology Society Annual Meeting and Exposition delved into this issue, specifically comparing CLL outcomes for Black and White patient populations, as highlighted by Ira Zackon, MD.

The study was conducted in community oncology settings, and revealed a 20% difference in overall survival, with Black patients experiencing higher mortality rates at 61% compared with White patients at 43% (P =.002). Notably, Black patients were diagnosed at later stages and faced financial limitations, suggesting socioeconomic factors as potential contributors to disparities.

In an interview with Targeted OncologyTM, Zackon, a hematologist/oncologist with New York Oncology Hematology, and a senior medical director with Ontada, a data science company part of McKesson, shed light on the need for multi-pronged solutions to address these inequities through fostering accessible community-based care. This includes building trust within diverse communities.

Targeted Oncology: Can you discuss your real-world study on racial and socioeconomic disparities in CLL?

Zackon: This was real-world data research in chronic lymphocytic leukemia or CLL. We used a database that is sourced in community oncology, and we had a particular focus on looking at any differences in patients and outcomes based on race or certain social determinants of health in particular, socioeconomic factors. In CLL, the way we treat has really changed since the introduction of [Bruton tyrosine kinase (BTK)] inhibitors back in 2014, and then BCL2 inhibitors and antibodies that we use. [They have] improved the lives of patients with CLL. But we also understand, not just in CLL, that there are other factors that can go into outcomes that we call social determinants of health.

Our study used the electronic health record, called iKnowMed, that is part of the US Oncology Network. This is the largest aggregated group of community oncologists. We have a large database that is geographically across the country. Within that, we identified over 12,000 patients with CLL, starting from 2015 up until mid 2023. It covered an approximate 8-year period to reflect this time when we changed therapy of CLL.

What were the main findings of this research?

What we saw in that population was first that when we looked at race, just the demographics, 91% of the patients were White, 5% were Black, and 4% were other. That is reasonably aligned with what we might expect in the general population for CLL as a disease. However, we could see some clear differences. One is that Black patients with CLL were a mean 2 years younger at diagnosis, so 68 years old vs 70 years old. Importantly, they also presented more at advanced stage CLL, stage III and IV, 55% of Black patients vs 45% of White. Stage III and IV is usually more symptomatic and needs treatment. Some patients may be diagnosed at earlier stages where if there are not many symptoms. One can observe it for even many years before it needs treatment.

White blood cells in leukemia, AI Generative: © Катерина Євтехова -

White blood cells in leukemia, AI Generative: © Катерина Євтехова -

Then looking at these social determinants of health factors, we used structured data. When taking care of patients, one is entering things, some of it is structured text that we can extract easily for purposes of data and analysis and research. We looked at total household income, as well as level of education. We saw differences in both of those measures where black patients with CLL overall had a lower level of education, in terms of high school or college or beyond, and then a lower level of income, where there were more patients with less than $30,000 to have total household income vs more than $30,000. So we stratified it.

From there, recognizing some of these differences, we looked at the overall survival during this time period of data. In 8 years of data, we saw that the rate of death or like a mortality event was 61% in Black patients compared with only 43% in the White. That is almost a 20% difference in the overall survival. That is a real signal that there is something to pay attention to and recognize. When you go back and adjust statistically for these different factors, race alone did not maintain statistical significance, although we can recognize it is clinically and socially significant. But the household income being less than $30,000 retained its significance as a potential driver, or at least a significant contributor to that outcome of overall survival. Even though we only were able to collect that data in structured text for 25% overall of the population. We know there are unaccounted for and missing data, yet it still was recognized as an important driver.

We concluded from this that we are seeing a difference in overall survival and between Black and White patients with CLL in the community oncology setting, and that financial limitations [are] potentially 1 of the factors contributing towards that. There is a lot more to understand in order to make solutions and make impacts. The goal is to see that gap disappear when we look again, in the future, hopefully understanding more about what is happening.

What strategies can community oncology practices implement to address these disparities?

There are multiple levels to that. First, it starts with a community base being accessible to where people live, hopefully being geographically in areas that allow reasonable access to get the care. Second would be a healthy culture. When someone walks in there, they should have trust and feel comfortable, regardless of who they are. Across the diversity, we should have a staff and a culture that sees each individual for who they are at the human level and recognize everyone for the diversity of who they are. We are a team. It is not just physicians. We have advanced practice providers, [physicians assistants, etc.], who spend more time with patients, that's the way it's structured. Nurses play an important role, because they spend a lot of time both speaking on the phone or in communication channels, as well as in the office when they are coming in for treatments. All of those can be important feedback of information to identify some issues that maybe need to be addressed. Many of the practices may have social work, so it is being able to connect, to identify issues, but all of that requires a good relationship so we can have honest discussions of what's going on and then bring on help.

Is there a potential role for technology or telehealth in addressing these disparities?

Absolutely. Telehealth became the norm during [the] COVID-19 [pandemic] and it hasn't gone away. Practices had to stand up telehealth technology if they didn't already have it. Fortunately, our policymakers have recognized the importance of telehealth, so they have not restricted its use, which has been important post-COVID. I do a fair amount of telehealth. It can overcome the distance barriers and transportation barriers. Depending on what one is treating, they still may need labs, still may need some in-person visits, a physical examination is important, but you can sometimes do telehealth for 1 visit and do an in-person visit another. What is nice about telehealth is that you meet people where they are at. It could be home, it could be on the road, it could be at their workplace so that it's convenient. It is a nice connection if you already know them. [We] still must make a physician and patient relationship. I think it is 1 solution to overcome some of those issues, at least when it comes to getting into an office easily if you were required to rely on public transportation or someone else helping to get you there. If it doesn't happen, then the visit doesn't happen.

How can we ensure clinical trial patient populations are more inclusive and minorities are better represented?

Clearly, clinical trials underrepresent the diversity of our American population. There are efforts to educate more about clinical trials. One of the things that we do experience is a lower level of trust, sometimes in medical interventions, and then the idea of being on an experimental trial, sometimes that comes up more in Black patients. I experienced that when I get to know my patients, for example, with sickle cell anemia who sometimes do not always like to be in the hospital or go to the hospital, but they must, they don't feel that they are necessarily trusting in that encounter, or they are looked at as individuals. Understanding that can be a factor [is important]. We must build trust.

We are using some technology tools that can, depending on what disease, be able to create some triggers that identify and alert the research team that there is a potential patient, and then you can do more outreach to make sure that the clinical trial option is offered and that [there is education around] that. Hopefully there will be full participation in the potential of that trial. We need to use technology tools, as well as make a commitment to the trial that we need to have a target X number of this patient population and be powered enough so that it is representative in the study. I think we are certainly there in terms of understanding the need and what tools can we bring in the clinical trials and research programs to enhance that. I think technology is going to be able to at least support the identification of people to enhance that outreach, and we want to make sure these opportunities exist.

1. Su Z, O’Sullivan AK, Marcus A, Zackon IL. Racial and socioeconomic disparities among patients with chronic lymphocytic leukemia (CLL) treated in the US community oncology setting. Presented at: 65th American Society of Hematology Annual Meeting and Exposition, December 9-12, 2023; San Diego, CA. Abstract 2406. doi:10.1182/blood-2023-182498
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