In an ideal world, it shouldn’t matter who you are, where you live, how much money or what kind of insurance you have—none of those factors should impact your ability to access quality healthcare, especially when you have a disease like blood cancer.
But the reality is that for many patients, there are obstacles to getting the quality care they need and deserve.
Recognizing these barriers, The Leukemia & Lymphoma Society (LLS) works hard to help patients get the care they need, wherever they are in their blood cancer diagnosis—even when that care comes at the end of life.
Advancing equity
LLS’s Equity in Access Research Program was created to fund health services research that investigates the many causes of inequitable access to blood cancer care—generating evidence that can directly shape and influence healthcare practices and health policy that reduce barriers to quality care.
Through studies such as the one led by Dr. Oreofe Odejide, we’re getting data that brings us closer to that goal.
Introducing Dr. Odejide
Dr. Oreofe Odejide is a hematologic-oncologist and health outcomes researcher at the Dana-Farber Cancer Institute. What drives her work every day: “I have seen the physical and emotional toll that a diagnosis of blood cancer has from my patients, family members, and dear friends,” she explains, “I want to do my part to improve outcomes for each patient in front of me and through research for the patients beyond my practice.”
Her research focuses on a topic that hasn’t been addressed enough: why quality end-of-life care isn’t an option for every patient in the terminal phase of their blood cancer.
To learn more about this issue, LLS awarded Dr. Odejide a multi-year grant through the Equity in Access Research Program in 2023. The purpose of this study is to look at how the quality of end-of-life care—reflected in trends such as rates of hospice enrollment and intensive healthcare use—differs based on health insurance type.
Why does end-of-life research matter?
Sometimes, treatment doesn’t work for a patient. That’s when high-quality end-of-life care should be a priority. Should be—but often isn’t.
Dr. Odejide had a “light bulb moment” with a blood cancer patient who wasn’t responding to treatment. Too late, she realized she had focused solely on trying to find more treatment options and not on the patient’s interest in discussing palliative care. Unfortunately, her patient died soon after—in a hospital intensive care unit focused on keeping them alive, rather than in hospice, receiving quality end-of-life care.
Dr. Odejide began looking for research on the quality of end-of-life care. She was shocked to learn that nearly half of patients who die of blood cancers each year in the U.S. experience less than optimal end-of-life care, often decreasing their quality of life. And she discovered that patients with blood cancers from racial and ethnic minority groups are more likely to experience suboptimal care at the end of life.
“Patients with blood cancers were more likely to die in hospitals, more likely to have intensive care unit admissions in the last 30 days of life, and less likely to enroll in hospice compared to patients with solid malignancies.”
- Dr. Oreofe Odejide, LLS-funded researcher
There was a lack of data regarding why care was this way, or how to improve its quality. And Dr. Odejide saw a need for research “to characterize the drivers of end-of-life care for patients with blood cancers, with the goal of developing interventions to improve care and quality of life for this population near the end of life.”
One thing became clear to her: differences in health insurance seem to play a part in end-of-life care.
How health insurance affects end-of-life care
To study the role insurance plays in the quality of end-of-life care, Dr. Odejide joined forces with Dr. Gregory Abel to create an innovative research study: Health Insurance and End-of-Life Care for People with Hematologic Malignancies.
The team has been using data from a group of blood cancer patients at Dana-Farber Cancer Institute, as well as a national claims database from the Centers for Medicaid and Medicare Services, to look at differences in care quality based on enrollment in Medicare Advantage or traditional Medicare fee-for-service (FFS) plans.
Medicare Advantage, also known as Part C, lets beneficiaries receive their benefits from a private health plan. Medicare Advantage plans have become popular because they cost less on average, and they include benefits and services that traditional Medicare might not cover. But these plans also have fewer providers in their networks, and some cancer patients find that their oncologists or specialty cancer centers may not be included in their Medicare Advantage plan.
Unlike traditional Medicare FFS plans, Medicare Advantage plans are paid fixed amounts per patient (influenced by several factors). These plans also do not pay for hospice care—those costs are covered by traditional Medicare.
The early results—in Dr. Odejide’s words
“Our study shows that in a large population of older patients who died of blood cancers, patients with Medicare Advantage insurance were less likely to die in hospitals and had higher rates of hospice use compared to patients with Medicare fee-for-service insurance—suggesting potentially higher quality end-of-life care for the former,” Dr. Odejide states.
She goes on to say, “Given that insurance type may impact the quality of end-of-life care, future work characterizing which specific elements of Medicare Advantage promote high-quality end-of-life care may help to improve access to high-quality end-of-life care for all patients with blood cancers.”
Every person with blood cancer, and their loved ones, should be able to expect quality end-of-life care if they need it.
Like every Equity in Access-funded researcher, Dr. Odejide hopes that the results of her research will inform the policy changes that the LLS Office of Public Policy and LLS advocates are working hard to advance. Changes that make quality insurance coverage more accessible will expand access to high-quality care for blood cancer patients at every stage of their experience—including the end of their lives.
This is what the Equity in Access Research Program is designed to do. To improve the quality of life for all blood cancer patients, survivors, and their families. That’s our mission, after all.
Want to learn more about researchers who are working to close these healthcare gaps, like Dr. Odejide? Find our Equity in Access research portfolio here.