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Regional Disparities in Chronic Lymphocytic Leukemia: A GPS for Cancer Care

June 22, 2023
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Access to equitable and comprehensive cancer care is largely dependent on geography. For patients with chronic lymphocytic leukemia (CLL)—the most common form of leukemia in adults (accounting for one quarter of new leukemia cases annually)—equitable access to care is particularly challenging, as the disease is often diagnosed in community care settings encumbered by regional disparities such as limited access to specialist care. Therefore, identifying and understanding the regional barriers to care that exist is essential.

In 2020, the Association of Community Cancer Centers (ACCC) developed a heat map detailing the incidence rate of chronic lymphocytic leukemia in different states and metropolitan areas. In 2022, another map highlighting the locations of chronic lymphocytic leukemia expert providers around the country was placed over this heat map, and it revealed the areas in the US most in need of clinical expertise.

Building on these findings, ACCC set out to identify and understand specific regional challenges to appropriate and equitable care for patients with cancer, as part its education program A Regional Approach to Advancing Care for Chronic Leukemia Patients, which is supported by AstraZeneca, Janssen Oncology, and Pharmacyclics. To initiate conversations with providers about the geographical barriers patients with cancer face, ACCC conducted four webinars in February 2023 which examined heat map data from four regions:

  • Northeast (New York and Maine)
  • Northwest (Montana and Idaho)
  • Midwest (Wisconsin, Illinois, and Iowa)
  • Southwest (Texas)

This webinar series, Addressing Regional Cancer Care Disparities in CLL, was facilitated by Amy Goodrich, RN, MSN, CRNP-AC, nurse practitioner at Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University, Baltimore, Maryland. Farrukh Awan, MD, MS, professor of Internal Medicine and director of Lymphoid Malignancies at the Harold C. Simmons Comprehensive Cancer Center and University of Texas Southwestern Medical Center in Dallas, Texas, offered participants a clinical update on the landscape of chronic lymphocytic leukemia. Further, participants shared the challenges and barriers they have experienced in their state or region, as well as exchanged ideas on strategies to improve care for patients with chronic lymphocytic leukemia.

Diagnosing and Treating Chronic Lymphocytic Leukemia

There has been an increase in the diagnosis of chronic lymphocytic leukemia in recent years due to the availability of flow cytometry testing, an easy-to-use diagnostic tool that helps doctors diagnose, stage and follow the treatment of a patient with cancer. However, treating chronic lymphocytic leukemia, in the cases where treatment is possible, is much more complex. “We’ve tried treating chronic lymphocytic leukemia at the time of diagnosis, but we found that patients don't necessarily live longer as a result,” Dr Awan said. “If a patient is 70 years of age or older, and is treated early in their diagnosis, they may die due to treatment related complications…the treatment can be worse than the disease.”

The challenges to treatment that accompany chronic lymphocytic leukemia makes it critical for patients and providers to identify certain criteria before beginning treatment. This includes determining the disease burden, whether a patient has any disease-related symptoms, or if the patient meets certain active disease criteria (eg, Binet Stage C or Rai Stage III or IV). Further, by utilizing genetic testing, such as the TP53 gene mutation test, physicians can identify whether a patient should begin chemotherapy or an alternative therapy, such as novel targeted therapies. Dr Awan recommends that healthcare providers should be looking ahead for more data in the future as the treatment and management of this disease continues to improve.

The Importance of Community Partnerships

As patients with chronic lymphocytic leukemia are older in age, transportation, caregiver support (for treatment adherence and to monitor side effects), and financial difficulties related to copays and out-of-pocket expenses were highlighted as critical barriers to care. Building trust, particularly in minority communities, also presents a significant challenge. “In our geographic area [the US Southwest], minorities tend to have their own referral patterns—there are physicians and groups that they trust, generally,” Dr Awan said. “Especially in the African American community, there's a generally a lack of trust so engaging community partners is important.” Dr Awan believes these community partnerships must be developed gradually, and in lockstep with patients from underrepresented communities. “Patients from these communities have to feel like they are a part of the decision-making process, and that we [providers] are in it with their best interest at heart,” Dr Awan explained.

Dr Awan and Goodrich recommend that cancer programs and practices collaborate with community outreach organizations to address other barriers, such as transportation or financial difficulties by offering support through ride share programs, transportation vouchers, financial assistance programs, and more.

In addition, as many patients are diagnosed in the community setting and smaller practices where physicians do not often have experience with chronic lymphocytic leukemia, provider education on new developments in testing and treatments is key—as is patient education. “Developing more written information about these [chronic lymphocytic leukemia] prognostic factors, questions to ask your provider, and things that patients should be thinking about [when diagnosed with chronic lymphocytic leukemia], is so important,” Goodrich said. “So that no matter where a patient stumbles across information, it’s empowering and accurate information.”

Looking Forward

Look for an upcoming series of articles this summer on how three cancer programs have adopted a regional approach to advancing care for patients through community outreach. For more information on the education program, A Regional Approaches to Advancing Care for Chronic Lymphocytic Leukemia Patients, visit the ACCC website.

The ACCC A Regional Approach to Advancing Care for Chronic Leukemia Patients is supported by AstraZeneca, Janssen Oncology and Pharmalytics and is in partnership with CLL Society, Inc.

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