In my years as a practicing hematologist-oncologist and now as chief medical officer of The Leukemia & Lymphoma Society (LLS), I’ve met many blood cancer patients who worry about how they’ll afford their treatment on top of day-to-day expenses like rent and groceries. LLS offers financial assistance for qualifying blood cancer patients and families to help them through difficult times, but the dollars we provide can feel like just a drop in a giant river of need that rises higher every day. Just recently at LLS Lobby Day in Washington DC—where patients and families urged lawmakers to address rising healthcare costs and medical debt—one patient shared how mounting medical bills caused her to give up her home and live in a camper. Another told of feeling guilty about surviving because of the financial burden her treatment caused her family.
With the costs of cutting-edge cancer therapies skyrocketing, forty-two percent of patients exhaust their entire life savings within two years of a cancer diagnosis. What’s more, one in four cancer patients delay medical care, go without care, or dangerously alter their cancer treatment because of cost.
LLS takes a holistic approach to improving patients’ lives
I’m often asked whether the dollars LLS spends to support patients would be better put toward additional research for cures. Of course, the life-saving treatments LLS helps to develop are vital to improving outcomes and quality of life for blood cancer patients and their families, and we are proud of the progress we’ve driven. But helping patients access them is just as critical. Think about the difference a better Medicare plan could make for a retiree on a fixed income struggling to afford treatment. Or what having continuous healthcare coverage could mean for a young adult dealing with blood cancer.
To truly accomplish our lifesaving mission at LLS, we must identify the barriers to cancer care so that we can determine how to most effectively remove them for patients and families. As South African bishop and theologian Desmond Tutu said in one of my favorite quotes: “There comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they're falling in.”
How the LLS Equity in Access program is changing the face of blood cancer care
LLS’s Equity in Access Research Program is one of our efforts to go upstream. It awards multi-year grants to researchers investigating the causes of inequitable access to blood cancer treatment and care. The grantees must not only identify the obstacles but also find actionable solutions that can be implemented through policy reform and changes in healthcare practice, so that all patients can get the care they need and deserve, regardless of income, race, language, or geographic location.
After launching in 2022, the program’s initial area of focus has been on insurance and how it affects access and survival rates. Here are just some examples of the research LLS supports through this program:
F. Lennie Wong, Ph.D. from the Beckman Research Institute of the City of Hope in Duarte, California looked at multiple myeloma outcomes in nearly 6,000 patients and found that one key reason for worse survival rates for many in the African American/Black community is tied to their type of insurance—Medicaid instead of private insurance or Medicare. These findings, presented at last year’s American Society of Hematology (ASH) meeting, provide real-world evidence of how inequity in health insurance impacts survival, and can be used to drive policy solutions.
Research led by Stacie Dusetzina, Ph.D. from Vanderbilt University Medical Center in Nashville, Tennessee found that individuals with a history of cancer choose Medicare coverage differently than those with no history of cancer. They are more likely to pick plans that allow greater access to healthcare providers and increased financial protections. It shows the need for improving educational resources during initial Medicare enrollment to help beneficiaries who may not have dealt with cancer before better understand coverage options and select plans that best meet current and future healthcare needs.
Xu Ji, Ph.D. at Emory University in Atlanta, has provided the first evidence that young patients with a blood cancer do better if they maintain continuous insurance coverage. Not only does having continuous coverage help with earlier diagnosis and better access to treatment, it protects children, adolescents, and young adults after cancer treatment. Unfortunately, among Medicaid-insured patients, only two in five had continuous coverage in the year before diagnosis. These findings will inform policy interventions to help Medicaid-insured patients receive continuous coverage for optimal outcomes.
Lori Muffly, MD, at Stanford University in California, and her co-investigators are studying whether specific types of health insurance prevent adolescents and young adults (AYAs) with newly diagnosed Acute Lymphoblastic Leukemia from receiving specialized care that can increase their chances of survival. The team is looking into the differences in treatment and outcomes when AYAs have access to specialized cancer centers versus community hospitals. They’re asking: What are the economic, insurance, institutional, and policy barriers to getting patients to more specialized care centers? What actionable steps can be taken to address and reduce those disparities?
“If we can understand how to get these young patients to where they can receive the best curative therapies, we’re going upstream of the problem,” Dr. Muffly says. “The Equity in Access Research Program is unique because it offers opportunities for researchers who want to make fundamental changes in the practice of blood cancers for patients and families. It fills a need that you can’t get at in basic lab research or clinical trials.”
Dr. Muffly’s research informed the California Cancer Care Equity Act, which allows patients on Medicaid to access specialized cancer centers where they can receive the most cutting-edge treatment and care. It’s a great example of how Equity in Access research leads to actionable solutions. “These are complicated issues to solve,” acknowledges Dr. Muffly, “but we need to try if we want to reduce health disparities.”
I agree. We cannot turn our backs on the thousands of patients who are unable to access the cutting-edge blood cancer treatments that LLS helps fund. We can’t focus on innovation alone while cancer patients are drowning in an ever-rising river of need. We need to offer them assistance. And we must find out what’s causing them to fall into the river of need in the first place. Only then can we work toward policies to keep them safely on shore.
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The next round of Equity in Access Research grants will focus on interventions to increase participation in clinical trials, particularly among underrepresented groups. Applications are now open, and researchers can apply here.
Our 2024 Equity in Access Research Grantees have just been announced! You can read more about them here.
LLS gratefully acknowledges Royalty Pharma and AstraZeneca for their support of the Equity in Access Research Program.