How the Leukemia & Lymphoma Society Is Working to Ensure Equitable Access to Care
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Leukemia & Lymphoma Society CEO Dr. Andy Kolb with other executives and volunteers at Dare to Dream Summit in Washington, D.C., in October. photo courtesy of Leukemia & Lymphoma Society.
In the world of cancer research funding, there’s been a surging interest in equitable access to treatment, a trend we explored at length in our 2023 white paper on the topic. In the first in a series of follow-up posts on the topic, we took a closer look at how Susan G. Komen, for example, is tackling socioeconomic and behavioral factors that drive health disparities in breast cancer care.
Komen was one of several organizations we came across in our research that is pursuing this line of work, including the Leukemia & Lymphoma Society (LLS), which is carrying out a 10-year effort to encourage lawmakers to minimize barriers to care for patients and promote equitable care.
Founded in 1949, the Rye Brook, New York-based LLS is the largest nonprofit dedicated to blood cancer. Our white paper classifies it as a “patient advocacy organization,” in that it is committed to a broad set of activities, including advocacy, patient and caregiver support, and research. It reported $372 million in net assets and $401 million in incoming contributions and grants for the fiscal year ending June 2022, and has invested more than $1.7 billion in research since its inception. Last year, it received a $17 million gift from the Mike and Sofia Segal Family Foundation earmarked for researching a rare form of blood cancer called chronic myelomonocytic leukemia.
Given the LLS’s longstanding commitment to removing obstacles to equitable treatment, including access to new advancements in care, I reached out to Chief Operating Officer Troy Dunmire for a more comprehensive summary of its work in this area.
“Novel treatments tend to be less harsh, more effective and often lead to better outcomes for most patients, compared to traditional chemotherapy and standard protocols for treating a cancer diagnosis,” Dunmire said via email. “The LLS knows that anyone can be impacted by blood cancer, but not everyone has equal access to the care they need, including advancements available through clinical trials.”
Here’s an overview of the LLS’s efforts to boost equal access, which include expanding participation in clinical trials, research and advocacy, and developing the next generation of diverse cancer scientists and physicians.
Reducing barriers to clinical trials
A big theme in IP’s research on this topic is how an individual’s ability to access clinical trials hinges on a variety of factors, such as their location, transportation and cost concerns, and a commonly held distrust of the medical community. Dunmire underscored these obstacles, noting that “most clinical trials are centered at large academic medical centers, which often creates an access barrier for patients who live in rural or isolated communities.” On the other hand, “for patients based in urban communities, cultural barriers often prevent access to these potentially life-saving trials.”
In 2021, the LLS rolled out the first set of grants through its Influential Medicine Providing Access to Clinical Trials (IMPACT) Research Grants Program, which aims to improve access to clinical trials for underrepresented patients, including Black, Indigenous, and people of color (BIPOC), Hispanic, Latino and people from rural communities. Through the program, LLS is funding work at seven cancer institutions in geographically diverse locations across the country, like the City of Hope Comprehensive Cancer Center main campus in Duarte, California, which has a catchment area of 9,365 square miles and serves a multiracial, multi-ethnic region of 17 million people.
“While clinical trial costs and expert guidance remain the responsibility of awarded institutions, the LLS IMPACT funding they receive — made possible thanks to philanthropic investors — allows grant awardees to offer trial treatment and care at local cancer care delivery settings in their region to increase study access and enrollment beyond their primary location,” Dunmire said. “This ability to expand access of blood cancer treatment studies into more traditionally underserved communities will increase trial representation and grow awareness and education within these populations.”
The LLS also provides clinical trial nurse navigators to guide patients throughout the clinical trial process, while its website dispels clinical trial myths, addressing common concerns that a patient will be “treated like a guinea pig” or get a placebo without informed consent.
Addressing drivers of inequitable access
Three years ago, the LLS rolled out its Equity in Access Research program to fill a critical gap in existing academic research by awarding multi-year grants to researchers investigating what it calls the “modifiable causes” of inequitable access to care. “The findings,” Dunmire said, “will enable LLS to draw on a greater body of actionable evidence to inform its efforts to foster meaningful change in healthcare policy and develop programs that tangibly improve the lives of patients with and survivors of blood cancer.”
Over the past two years, the program has awarded nearly $5.3 million in combined funding for eight grants led by a diverse group of 15 health services researchers working to enhance understanding of how insurance affects access to care. Two recent recipients — University of Texas MD Anderson Cancer Center’s Meng Li and Christopher Flowers — will use grant support to investigate the “impact of insurance coverage on access to care and outcomes among lymphoma patients” by, among other things, determining if the type of insurance coverage influences disparities in access and outcomes based on patient race, ethnicity and household income.
LLS also launched an initiative to address health disparities in blood cancer patients of Hispanic and Latino origin, particularly those for whom language, low literacy and insurance status hinder their ability to receive equitable care. Through this program, the LLS connects patients with expert care and services, and engages Spanish-speaking community health workers, advocacy organizations, media partners and community leaders.
Advocacy work
Nonprofit leaders looking to boost equitable access to cancer care recognize that fundamental change happens at the federal and state government levels. In May, close to 100 blood cancer advocates, including members of the LLS Office of Public Policy, met with legislators in Washington to advocate for the passage of two pieces of legislation — the Accelerating Kids’ Access to Care Act, which would reduce paperwork required of doctors treating children from out of state, and the NIH Clinical Trial Diversity Act, which aims to increase the diversity of participants in all National Institutes of Health-funded trials.
The latter bill requires the NIH to work with clinical trial sponsors to develop clear and measurable recruitment and retention goals based on disease/condition prevalence and ensure the availability of less arduous follow-ups during clinical trials to increase participation of underrepresented populations. The LLS website notes that a bipartisan group of lawmakers introduced the bill one day after meeting with advocates.
LLS also points to a series of advocacy wins at the state level that seek to minimize financial hardships for cancer patients. Colorado became the first state to ban all medical debt from appearing on credit reports. Minnesota’s Paid Family and Medical Leave Act provides patients and caregivers up to 12 weeks of paid leave for patients with severe medical conditions like cancer. And after years of lobbying from LLS advocates and staff, North Carolina lawmakers voted to expand Medicaid eligibility for 600,000 of the state’s residents.
Cultivating a diverse talent pipeline
Like other funders cited in our white paper on cancer research, LLS is working to develop a diverse scientific workforce. “Physicians from underrepresented groups who stand at the interface of clinical medicine and research may promote health equity by helping instill within their patients a trust in the scientific process,” Dunmire said.
To accomplish this goal, LLS launched the Underrepresented Minority Medical Student Research Program to provide minority medical students the opportunity to engage in full-time blood cancer research in partnership with experienced scientists. Students will receive a $75,000 stipend for living expenses, up to $5,000 for relocation costs, $3,000 for conference attendance and access to mentorship opportunities. “The hope,” Dunmire said, “is that this program will open new interest, with some students later pursuing careers as physician-scientists with a focus on blood cancer.”
In related analysis, check out this post summarizing a set of key takeaways — including the need to provide more equitable care and testing — gleaned from our white paper on funding for cancer research.
