New Leukemia & Lymphoma Society president to focus on drug development, health disparities
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In his new role as president and CEO of The Leukemia & Lymphoma Society, pediatric hematologist oncologist E. Anders Kolb, MD, aims to expand his life’s work in advancing blood cancer research and therapies for patients of all ages.
But bringing new therapies to market is just the beginning of the story.
“There’s no point in developing innovative therapies if not all patients can access them,” Kolb told Healio. “We need to make sure we have policies and processes in place that support patients everywhere and break down barriers preventing access to innovative therapies.”
Kolb most recently served as chief of the division of hematology and oncology at Nemours Children’s Health, Delaware Valley; director of Moseley Foundation Institute for Cancer and Blood Disorders; and vice chairman of research in the department of pediatrics at Thomas Jefferson University's Sidney Kimmel Medical College. He previously worked at Memorial Sloan Kettering Cancer Center and served as director of the pediatric leukemia and lymphoma service and pediatric stem cell transplantation center at Children’s Hospital at Montefiore in the Bronx.
Kolb — who succeeds the retiring Louis J. DeGennaro, PhD, as president and CEO of The Leukemia & Lymphoma Society (LLS) — spoke with Healio about the recent progress in blood cancer research, the obstacles LLS still faces, and the importance of ensuring equitable and accessible treatment for all patients with cancer.
Healio: How will your background and experience help you in your new role as LLS president?
Kolb: I’ve practiced across a range of environments, from the large academic tertiary/quaternary care to more community-based programs. My research has always focused on drug development for children with cancer, particularly leukemia.
I’ve been funded as a principal investigator (PI) of the NCI Community Oncology Research Program, which is focused on clinical trials for kids. I also was a PI of a large sickle cell disease study.
My focus in sickle cell research was around health equity — understanding the impact of racism and stigma in the delivery of effective therapies to children with sickle cell disease.
Additionally, I have spent the past 5 years working with the LLS on the Dare to Dream Project. Specifically, I co-chaired the Pediatric Acute Leukemia (PedAL) Master Clinical trial. The first of its kind, this trial is aimed at identifying and developing new therapies for children with blood cancers. The talent, expertise and passion within LLS is what attracted me to join the organization.
Healio: What are your goals as LLS president and CEO?
Kolb: I’m a pediatrician so children are always in the front of my mind, and developing innovative therapies for children with leukemia continues to be a huge challenge. The pediatric-specific blood cancer targets are not prioritized. There are regulatory and logistical barriers. We need to open sites across the world to make sure we can get enough patients and data to be able to interpret a result. Doing global clinical trials and meeting the regulatory requirements of multiple international entities is a challenge that isn’t easily solved. Bringing promising new therapies to children early in the drug development cycle absolutely continues to be a priority.
Expanding the LLS’ role in health equity across age groups continues to be mission critical, and health equity research is a high priority for the organization. It is an area where we will continue to provide funding and expertise to support high-impact initiatives and reach more patients.
One of the challenges that we have in cancer care is that it is getting more expensive and more complicated, and we’re asking more of patients and families, both in terms of logistics as well as paying out of their own pocket for care. LLS provides support through its information resource center and clinical trial support center to make sure patients have personalized support and information and access to the most effective therapies. We also work with our office of public policy and volunteer advocates to address some of the fundamental cost issues and other barriers to access that our patients face.
Healio: What are you most excited about in terms of promising blood cancer research or treatments?
Kolb: At LLS’s Lobby Day in Washington, D.C., I spent time with a hundred volunteer advocates from all over the country — mostly blood cancer survivors and their families. They were trained around specific policy issues. It was exciting and inspiring to walk side by side with these advocates as they told their stories and engaged in a coordinated effort to help change federal and state policy. To me, that must continue to be an important focus of this organization.
LLS also has invested in practice-changing research, including immunotherapies and other conventional therapies. There’s so much to be excited about in drug development. Companies and academic partners are engaging in innovative research to develop therapies that won’t look like anything we’ve used before. We are all excited about targeted therapies, which have had a tremendous impact over the past 10 years. We have seen the rise of immunotherapies across all cancer types, particularly in blood cancers, and now we are starting to see the next generation.
Lastly, I am excited that health equity is in the front of everyone’s minds. We need to consider health equity in everything we do. We can’t just develop innovative therapies and expect they will get to everyone who needs them. We must make sure all patients — regardless of background, geographic location or economic status — can access those therapies.
Healio: What are some of the biggest challenges LLS is facing?
Kolb: Pediatric cancer drug development is what I’ve been doing my entire career, so I understand the depth and the breadth of challenges we face in this population. Market forces just don’t favor developing drugs for kids, so we end up repurposing drugs that have been developed for adults. Our PedAL master trial will fundamentally change how children with acute leukemia are treated, replacing a one-size-fits-all chemotherapy with treatments tailored to each child’s leukemia.
There also are challenges that are more common for older patients, including cost-sharing, copays and co-insurance, which are difficult for many families to manage. Our health care system doesn’t help all patients navigate these challenges, and that has resulted in tremendous disparities in access to care, enrollment in clinical trials and availability of therapies.
We have a wonderful opportunity to be involved in addressing these issues, but it is expensive. We plan to invest $175 million in the Dare to Dream Project, which will fund research and the PedAL master clinical trial, as well as grow our education and support services and advocacy efforts to help every kid with blood cancer get accessible, affordable, quality health care. This funding will enable us to start chipping away at the problem. I am hoping we will establish a strong base for drug development for kids that will be sustainable and reproducible across a range of diseases.
Healio: What would you tell members of the clinical community about how they can help LLS advance its goals?
Kolb: Keep doing what you’re doing. Hematologists and oncologists are on the front line for patients. I would encourage you to go to LLS.org, look at the phenomenal resources and share them with your patients. Our information resource center is staffed by social workers who can answer questions as patients and families navigate diagnosis and treatment. It is incredible for patients to have a social worker on the phone who can talk about available resources or simply listen to their concerns. Our clinical trials support center is staffed by oncology nurses to connect patients to clinical trials. An average cancer center enrolls 5% to 8% of adult patients in clinical trials. About 20% of patients who work with our clinical trial support center enroll in a trial.
An LLS clinical trial support center nurse is making 24 different contacts, including the patient and clinical trial center, as well as whatever other support they might need to get plugged into the right study. They have the ability to not just say ‘Here’s a trial that could work for you’ but to actually walk the patient through the eligibility process, answer any questions they have about consent and get them enrolled.
All of these amazing resources are supported through our fundraising efforts. LLS has increased mission spending by 40% over the last 2 to 3 years to make sure we can expand these resources for patients and families, because we know how valuable they are.
For more information:
E. Anders Kolb, MD, can be reached at CEOOffice@lls.org.