Advancing Research
Chimeric Antigen Receptor (CAR) T-Cell Stakeholder Summit Series
Chimeric antigen receptor (CAR) T-cells represent an important treatment option for patients with lymphoma. This treatment approach utilizes the immune system to target lymphoma cells, but unlike traditional immunotherapy, CAR-T cells are made by genetically programming a patient’s own harvested T-cells to target the antigens present on the surfaces of lymphoma cells. When these reprogrammed T-cells are then reintroduced to the patient’s system as an infusion, they work to attack their lymphoma. After years of incremental progress, CAR T-cell therapy has opened a door for patients who previously were out of options. In addition, CAR-T is a one-time treatment with the potential for durable remission, an outcome which changes the trajectory of treatment management of lymphoma long-term.
In clinical trials, CAR T-cell therapy has demonstrated improved outcomes (both in terms of response and durability), and this efficacy has translated well to the treatment of patients in the general population. Importantly, real-world evidence and clinical experience show positive outcomes in a wide range of patients, including those with significant levels of disease who would not have been eligible for participation in the original clinical trials. While CAR-T works differently from traditional chemotherapy or other immunotherapies, it is not “brand new,” but instead has an established safety and efficacy profile with toxicities that are largely manageable and reversible, especially when patients are treated by experienced specialists. Today, there are several CAR-T products currently FDA-approved for the treatment of lymphoma, and facilities and centers authorized to administer these treatments have extensive experience coordinating patient care, connecting patients with resources, and managing toxicities. Long-term toxicities are also manageable, and the late effects of allogeneic stem cell transplant, such as graft vs. host disease and damage from high-dose chemotherapies, can be avoided with CAR-T.
In spite of these positive attributes, CAR-T therapy remains an underutilized treatment option. Not all patients are learning about CAR T-cell therapy, and even those who are aware may be hesitant to pursue treatment or may face obstacles due to the cost of treatment, need for full-time caregiving, requirement for travel, or ineligibility for treatment due to disease burden, which may be due to late referral. Additionally, not all physicians are aware of when and how to refer patients for CAR T-cell therapy and may not be aware of CAR-T efficacy and its safety profile or understand eligibility requirements. The responsibilities of the referring physician and the referral center may also be unclear. Today, most patients are still treated with CAR-T as a third-line therapy, if at all, in spite of the fact that it is approved for second-line use. Critically, late referral for CAR-T can prevent patients who otherwise would be eligible from receiving this treatment, highlighting the need for timely referral and access to care.
A concerning trend is that CAR-T therapy continues to be used primarily by those with wide insurance coverage who are already actively engaged in their healthcare, are aware of CAR-T, and are empowered to push for CAR-T therapy. For the majority of patients, however, access remains low. Additionally, payer awareness of long-term vs. short-term costs is lacking and patients may be faced with treatment denials. CAR-T therapy is also logistically complex for patients. While CAR-T centers, which are specialized facilities authorized to administer this therapy, are well-versed in the process of treatment and are well-equipped to support patients, the need for travel to the center and remain nearby for several weeks afterwards for monitoring can be prohibitive. Once patients return to their communities, there is also a need for collaboration between the referring physician and the authorized CAR-T center to ensure adequate monitoring.
Led by Dr. Caron Jacobson (Dana-Farber Cancer Institute) and Dr. Javier Munoz (Mayo Clinic, Arizona), the Lymphoma Research Foundation convened the inaugural CAR T-cell Therapy Stakeholder Summit in January 2023 to discuss the factors preventing CAR-T from reaching its full potential and to develop solutions for the wide variety of barriers facing patients, their families, and their physicians. Participants of the Summit included representatives from diverse fields, including clinician-researchers, patient advocacy groups, pharmaceutical industry companies, professional societies, and a CAR T-cell lymphoma survivor. With each of the steps in the treatment journey in mind, participants discussed resource availability, utilization, and gaps for patient and caregiver education, treatment access, and post-treatment care. Participants identified key gaps and worked together as a group, and later in the day in small breakout groups, to propose and discuss solutions to address these key gaps. A full summary of the summit, key gaps, and solutions can be found linked below.
“CAR T-cell therapy has fundamentally changed the treatment landscape for several lymphomas, but its success in clinical trials only matters if patients can actually access it in the real world. We must streamline referral pathways, strengthen coordination between community oncologists and treatment centers, and remove logistical hurdles that delay care.“
Manali Kamdar, MD
University of Colorado
Despite advances in CAR T-cell Therapy, only an estimated 20–25% of eligible lymphoma patients in the United States receive CAR T-cell therapy. To better understand the barriers contributing to this gap, the Lymphoma Research Foundation convened a second multi-stakeholder Summit in September 2025 in Washington, D.C. The Summit planning committee, comprised of lymphoma clinicians and advocates, was led by Co-Chairs Dr. Manali Kamdar (University of Colorado) and Dr. Paolo Strati (MD Anderson Cancer Center), with Dr. Gilles Salles
(Memorial Sloan Kettering Cancer Center) serving as senior advisor.
The meeting brought together patients, care partners, clinicians from community and CAR T-cell centers, industry representatives, policymakers, and advocacy organizations to examine challenges across the patient journey—from referral and eligibility assessment to treatment and follow-up. Discussions focused on structural, operational, and system-of-care barriers and produced a set of priority recommendations aimed at expanding awareness, improving care coordination, optimizing administrative workflows, and strengthening collaboration across stakeholders to increase equitable access to CAR T-cell therapy.