For 40 years, I’ve poured my life into fighting cancer. Working alongside doctors, nurses, social workers, researchers—and of course patients and their loved ones—we’ve made incredible progress.
But what keeps me up at night after all these years is the realization that, for too long, the health sector didn’t focus on the holes in that progress. As we collectively sprinted towards better treatments, we’ve left some patients behind.
Here’s the ugly truth of cancer care: through no fault of their own, factors like a patient’s income, race, age, or even zip code can significantly impact their health outcomes. That’s why The Leukemia & Lymphoma Society (LLS) is committed to the LLS Equity in Access Research Program—to rewrite that truth.
The LLS Equity in Access Research Program is one critical way we’re working to extend and improve the lives of all blood cancer patients. We provide some of the cancer community’s brightest minds with funding to help them get to the bottom of why some patients aren’t getting the care and support they need. Even more importantly, we're helping to identify and even test solutions to those problems, so healthcare providers and policymakers can implement those solutions widely.
It’s research that doesn’t just exist in a journal; it’s shared with key decision-makers, leaders and policymakers who are in a position to act.
Why now?
Right now, the stakes for this work are high.
First, we’re on the cusp of some truly breakthrough treatments. We don’t want to repeat the mistakes of our past as we enter a new age of therapies. All types of patients should fully benefit from our advancements in cancer care.
Second, our advancements mean patients are living longer lives. But we want them to live fulfilling, complete lives, too. The Equity in Access Research Program is particularly focused on issues related to survivorship, such as fertility preservation, care engagement after treatment, and the financial impact of cancer on patients.
And third, to put it bluntly, this type of research is under threat. Health research continues to face federal funding cuts, and research focused on health equity is at the center of the crosshairs. The Leukemia & Lymphoma Society receives no federal funding. We are proud to play an important role filling some of the gaps caused by federal funding cuts as we work to make healthcare accessible to all patients.
What’s the impact?
Through this program, LLS has already distributed nearly $18 million to support 15 high-impact health services research studies since 2021—and that number continues to grow. But more impressive than the numbers is the impact.
For example, research we supported shows the big, positive impact of Medicaid coverage on patients’ survival rates. Children as well as adolescents and young adults with a blood cancer have better outcomes when their Medicaid coverage is uninterrupted and when they have Medicaid at the time of diagnosis—not afterwards. Those findings helped LLS successfully advocate for policies in California that ensure children in that state have Medicaid coverage for years at a time. LLS also continues to leverage this work as our staff and volunteers urge lawmakers to protect Medicaid coverage for all patients.
Another powerful example is our research focused on Medicare coverage, showing that when certain patients switch from traditional Medicare to Medicare Advantage plans, they often have trouble finding a doctor. LLS is using that research to advocate for state and federal policies that ensure Medicare plans meet the needs of cancer patients.
This evidence-based research—complemented by real stories from patients affected by these issues – allows LLS to tell lawmakers a powerful and complete story about the need for reforms.
What’s next?
Our latest Equity in Access grantees focus on increasing participation in therapeutic cancer clinical trials, which provide high-quality care and are important for advancing treatment options. You can learn more about them here.
A group of researchers from the Durham VA Health Care System will explore ways to increase the number of clinical trials for Veterans in the VA and increase participation of veterans in the trials that do exist. Another group, from Dana-Farber Cancer Institute, will examine strategies to increase trial participation among patients from groups historically underrepresented in trials by lowering trial design-related barriers and strengthening collaboration between academic and community sites of care.
We believe this work will provide evidence that researchers, healthcare providers and policymakers nationwide need to make therapeutic cancer clinical trials accessible to all patients. This work isn’t about producing research for research’s sake. It’s about providing evidence that can directly shape and influence healthcare and health policy.
We’re continuing to prioritize the need for data on effective strategies to increase therapeutic cancer clinical trial participation. Our recently-released Request for Proposals for the Equity in Access Research Program seeks to fund studies that implement and test approaches to address multilevel barriers to trial participation, particularly among patient groups that are underrepresented in trials.