Over the past 75 years, the Leukemia & Lymphoma Society (LLS) has maintained a mission of researching and eradicating blood cancer while improving the lives of patients and their families. The lifesaving programs LLS funds span the globe and focus on leukemia, Hodgkin's disease, myeloma, and lymphoma.
One vital arm of the nonprofit is the Equity in Access Research Program, which helps ensure that blood cancer patients and survivors have equitably distributed access to leading-edge medical care and services. This measurably aids their chances of survival and productive lifestyles in remission. The program addresses the various barriers in the way of this, spanning social, economic, and environmental factors.
In 2024, LLS expanded the scope of the program, issuing a pair of Requests for Proposals focused on increasing knowledge of health insurance and its impact on healthcare access. A corollary aim is to assess interventions that boost therapeutic clinical trial enrollment, with a focus on underrepresented groups. By generating substantial data, LLS can achieve meaningful healthcare policy progress and develop programs that have significant practical effects.
In July, LLS announced $6.5 million in grants to the third cohort of research grantees. Among these was a pair of University of Florida professors who are focused on the persistent issue of low rates of clinical trial participation among cancer patients. Only about five to eight percent of those with cancer take part in such studies, with this rate substantially lower among people in rural areas, older adults, and ethnic minorities. A major obstacle is that the academic cancer centers organizing trials are not well connected with the community oncology practices a majority of cancer patients rely on for treatment.
The researchers have designed The ECCO (Enhancing Connection and Communication with Community-Based Oncology Practices to Improve Cancer Clinical Trial Recruitment) study in partnership with 10 oncology practice sites focused on community care. The multi-level intervention trial has two basic strategies. Enhanced Communication delivers interactive online training designed to enhance community practitioners' knowledge of trials and provide them with pathways for proactively discussing trials with patients. ECCO seeks to create lasting ties between relevant trial principal investigators and community oncologists in ways that lead to consistent trial referrals.
Another Equity in Access Research Program-funded initiative also supports the efforts of a University of Florida professor. The director of the Hematologic Radiotherapy Program is researching insurance inequities and how this impacts treatment and survivorship for Hodgkin lymphoma across the Southeast.
The background is one in which, despite a favorable prognosis for many Hodgkin lymphoma cases, Hispanic and black patients have consistently worse survival rates than their white counterparts. This reflects differences in insurance status, which impacts treatments received for the disease and follow-up survivorship care. One proposed issue is that physicians consistently underestimate hematologic cancer patients' preference for shared decision-making (SDM) care modalities. Survivors often report minimal involvement in care and treatment decisions affecting their outcomes. The study seeks to provide quantitative insights that will help expand Medicaid coverage in meaningful ways and shift the paradigm toward personalized SDM treatment approaches.
These and other funded projects work toward what the Equity in Access Research Programs senior director describes as an organizational commitment to eliminating health disparities through a holistic approach that spans patient advocacy and support, as well as in-depth research.
