Blood cancers encompass more than 100 distinct diseases, ranging from acute leukemias to chronic malignancies that require lifelong management. While survival has improved dramatically for many patients, progress has been uneven. Sustained scientific investment, access to clinical trials, affordability of care and cross-sector collaboration have become defining challenges for the field.
One leader working at the intersection of clinical care, research and patient advocacy is E. Anders Kolb, MD, President and Chief Executive Officer of Blood Cancer United, formerly The Leukemia & Lymphoma Society. A world-renowned pediatric hematologist-oncologist, Dr. Kolb has spent his career caring for children with blood cancers while simultaneously building and leading research programs, transplant centers and global clinical trials. Today, he leads one of the world’s largest blood cancer advocacy and research organizations, overseeing a mission that spans discovery science, patient services and public policy.
In this interview with Xtalks, Dr. Kolb discusses how Blood Cancer United is evolving to reflect the science of blood cancers today, why collaboration has become non-negotiable and how the life sciences community can play a role in sustaining momentum for patients and families worldwide.
A Mission Rooted in Science and Patients
Founded more than 75 years ago, Blood Cancer United is the world’s leading volunteer health organization dedicated to people affected by blood cancers. Since its inception, the organization has remained focused on a singular goal: helping patients live longer, better lives.
Dr. Kolb explains that the mission is delivered through three tightly integrated pillars:
- Investing in research that drives scientific breakthroughs and advances new therapies
- Providing education, support services and financial assistance to patients and families navigating complex treatment journeys
- Advocating for policies that ensure access to affordable, high-quality care
Since 1949, the organization has invested more than $6.4 billion toward this mission, funding that has directly contributed to major gains in blood cancer survival.
The organization’s origins trace back to a single family whose child died of leukemia in the 1940s. What began as an effort to improve outcomes for one disease has since grown into a global movement supporting patients across the entire blood cancer spectrum.
Research That Changes the Standard of Care
At the core of Blood Cancer United’s work is a research portfolio designed to move discoveries from bench to bedside, and to do so equitably.
Dr. Kolb highlights chronic myelogenous leukemia (CML) as a defining example of what sustained research investment can achieve. Three decades ago, survival for patients diagnosed with CML was well under 30%. Blood Cancer United funded early research by Brian Druker, who identified a unique molecular vulnerability in CML cells, paving the way for targeted therapies.
Today, patients diagnosed with CML in the modern treatment era often have survival comparable to the general population, even though many are not considered cured and require long-term therapy. The example underscores a broader point: success in blood cancer is not always defined by cure alone, but by meaningful extensions of life and quality of life.
“Quality of life is a big part of our mission as well,” Dr. Kolb noted. “There are blood cancers out there where a cure may not be the goal, but patients can live full lives with the right treatment and the right support.”
To drive similar progress across other diseases, Blood Cancer United invests across the full research continuum:
- Discovery-stage science
- Early-career investigators
- Large, multi-institutional research teams
- Representative and inclusive clinical trials
- Biotech partnerships advancing novel therapies
Tackling Cost, Access and Quality of Life
Scientific progress alone is often not enough. As cancer therapies grow more complex, costs have escalated dramatically, with some treatments reaching five- or six-figure annual price tags.
Blood Cancer United works directly with patients and families to help them navigate these challenges, offering education about treatment options, financial and co-pay assistance, medical debt case management and support with insurance and care access.
These services ensure that scientific breakthroughs translate into real-world benefit, not just theoretical advances.
In parallel, the organization maintains a strong presence in state capitals and Washington, DC, working with policymakers from across the political spectrum to address systemic barriers to affordable care.
Confronting a Fragile Research Ecosystem
Among the most pressing challenges facing the blood cancer community is declining investment in scientific research. Dr. Kolb warned that reduced funding is already driving some investigators away from the bench.
“We know that we are losing investigators that are walking away from the bench or can’t afford to do the research that they had planned,” he said. “So we are working to try to keep as many young investigators in the game as possible through our grants program.”
At the same time, broader economic pressures, including projected losses exceeding $1 trillion across the US healthcare system, threaten to further strain patient access and affordability.
Collaboration as a Strategic Imperative
Collaboration is not just a value for Blood Cancer United; it is a core operating principle.
“United isn’t just our name. It is how we want to work,” Dr. Kolb said. “These are very difficult problems, and no single organization can solve them alone. We want to work with other organizations and foundations to make sure that we are funding the best science and not duplicating efforts.”
In practice, this emphasis on collaboration translates into programs spanning pediatric research, drug development, data science and patient access. Several current initiatives show how this collaborative approach is put into practice.
Advancing Pediatric and High-Risk Research
Blood Cancer United works to ensure that even the youngest patients can access emerging, potentially lifesaving therapies. At the same time, the organization supports innovation for patients with difficult-to-treat diseases such as acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS), where progress has historically lagged.
A flagship effort is the Dare to Dream Project, which is transforming pediatric blood cancer research through global collaboration. Central to this initiative is PedAL, a first-of-its-kind international master clinical trial for pediatric acute leukemia. PedAL brings together leading researchers worldwide to evaluate multiple therapies simultaneously, with a focus on safer treatments and fewer long-term side effects.
Accelerating Drug Development Through Industry Partnerships
Blood Cancer United’s Therapy Acceleration Program (TAP) invests directly in promising therapies developed by biotech companies. By providing strategic funding and partnership support, TAP helps de-risk early development and move urgently needed treatments closer to patients.
Integrating Data Science and Global Expertise
Recognizing the growing importance of data science, AI and computational modeling, Blood Cancer United is funding research that intentionally bridges traditional biomedical science with genomics, molecular medicine and advanced analytics. One recent example includes an international collaboration supported through a partnership with the Institute for Follicular Lymphoma Innovation, funding work led in Spain with US-based experts contributing complementary expertise.
Expanding Trial Access in the Community
Through collaboration with The US Oncology Network, Blood Cancer United connects patients at select community cancer centers to specialized clinical trial nurse navigators. These navigators help patients identify appropriate trials and guide them through enrollment and participation, reducing barriers that often prevent trial access outside academic centers.
Elevating Patient Voices Through Advocacy
Blood Cancer United also partners with fellow nonprofits, volunteer advocates and health leaders to influence policy at the state and federal levels. Initiatives such as national Lobby Days and the Dare to Dream Summit ensure that patient experiences inform legislative and regulatory decisions.
A Call to the Life Sciences Community
Dr. Kolb concludes with a clear message: progress in blood cancer depends on sustained engagement across the research and care ecosystem.
Researchers, clinicians, biotech leaders and advocacy organizations all play complementary roles in improving outcomes for patients and families.
In Dr. Kolb’s words, being “United” reflects a practical commitment to working together to advance research, expand access to care and translate innovation into real-world impact.
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