Abstract
Background: CAR T-cell (CAR T) therapy offers the potential for durable remission and improved survival for patients with hematologic malignancies, including relapsed or refractory non-Hodgkin lymphoma. However, many eligible patients face well-documented access barriers such as prior authorization delays, reimbursement challenges, caregiver availability, and insurance limitations. A recent retrospective study of CAR T referrals within a single network of 5 centers in 3 states underscored how evaluation-to-treatment delays can lead to disease progression and patient attrition prior to infusion (Battiwalla M, Blood Adv 2025). To better understand nationwide access challenges and inform solutions, the Association of Cancer Care Centers (ACCC) surveyed oncology professionals across 110 academic and community centers in the U.S. Key findings identified priorities for policy and systems-level improvements.
Methods: With input from an expert task force (N=5), ACCC distributed an online survey in April 2025 to multidisciplinary professionals involved in the care of adults with hematologic malignancies. Responses were stratified by whether the respondent's site was an authorized treatment center (ATC) for CAR T or referred patients externally (non-ATC). Statistical analysis included descriptive frequencies, t-tests, chi-square, Fisher's exact test, ANOVA, and Tukey's post hoc pairwise comparisons using Stata 18. Ranked composite scores were calculated by assigning weighted values to each rank position to determine overall priority across respondents. Open-text responses were analyzed using an inductive thematic approach.
Results: Of 136 respondents, 57% worked at ATCs and 43% at non-ATCs, spanning 37 states representing all 4 U.S. Census regions. Respondents were predominantly clinical, including advanced practice providers (21%), nurses/nurse navigators (20%), physicians (16%), and pharmacists (8%) with the remainder being non-clinical: administrators/coordinators (30%), social workers (3%), and other (2%).
The top 5 ranked barriers for timely CAR T evaluation, based on composite scores (higher values indicate greater perceived impact) were: travel distance from home to ATC (2.43); ability to travel for evaluation (1.84); ability to meet caregiver requirements (1.78); ability to afford treatment if approved (1.70); and prior authorization delays (1.65).
Further, ATC respondents were asked to describe factors that hinder delivery of CAR T. Respondents (n=70) aligned on common themes, including insurance and reimbursement challenges (n=20) and limited program capacity to manage logistical challenges (n=17). Respondents also cited patients' ability to travel/remain within required distance to ATC (n=12), treatment costs (n=12), prior authorization delays (n=10), and eligibility restrictions (n=7) as factors contributing to delayed or forgone treatment.
When ranking the top 5 policy changes needed to increase access, streamlining prior authorization was the top-ranked policy change needed (2.06), followed by Medicaid coverage/reimbursement (1.49), Medicare coverage/reimbursement (1.48), removing state-based insurance coverage requirements (1.35), and expanding coverage for health aides to meet caregiver requirements (1.35). Among the 88 respondents who provided qualitative feedback on Medicaid-specific challenges, common themes included inconsistent coverage across states, complex authorization processes, and low reimbursement rates for travel/lodging.
Additionally, policy priorities varied by program type: non-ATC respondents ranked government funding to launch CAR T programs significantly higher than ATC respondents (p=0.0149), while ATC respondents prioritized caregiver compensation or supportive policies (p=0.0394).
Conclusions: While policy priorities vary somewhat depending on whether a center administers CAR T, findings from this national survey reveal a clear consensus that policy solutions are needed to address financial, logistical, and structural barriers to timely CAR T access and delivery at both a state and national level. Medicaid-specific challenges such as inconsistent coverage, complex authorization, and low reimbursement, highlight the urgency for standardized policies. Cross-sector collaboration is essential to streamline prior authorization and advance advocacy efforts that support equitable and timely access to CAR T.
