CLL National Report
When Innovation Outpaces Access: Closing the Gap in CLL Care
People living with chronic lymphocytic leukemia (CLL), the most common adult leukemia, have more treatment options than ever before. But the healthcare system has not kept pace with the science. Many patients still encounter barriers to biomarker testing, guideline-informed care, CLL expertise and insurance coverage. This first-of-its-kind national report, commissioned by BeOne and developed by Charles River Associates with input from the blood cancer community, reveals where those barriers persist and outlines actions to help close the gap.
Understanding the Challenges
Scientific advances have dramatically changed CLL treatment over the past decade. Today, targeted therapies are improving quality of life, pushing five-year survival rates to nearly 90% and enabling more personalized treatment. Yet for too many people living with CLL, innovation in medicine alone is not enough to ensure they can fully benefit from this progress.
Where Access Falls Short
Patients often encounter barriers throughout the CLL care journey, from biomarker testing and treatment decisions to insurance approval and timely access to care. Gaps in evaluating individual risk factors, insurance barriers, inconsistent use of clinical guidelines, limited access to CLL expertise and affordability challenges can all stand between patients and the treatments their physicians recommend.
Fewer than 15% of Medicare patients studied received testing for all three of the most common CLL biomarkers.
Incomplete Access to
Biomarker Testing
Recommended biomarker testing, which is critical for identifying genetic risk factors such as del(17p), TP53 mutations and IGHV status, does not always happen before treatment decisions are made.
Limited Access to Trusted Information
Treatment decisions should be informed by current, scientifically accurate information, CLL expertise or the full range of patient factors, including genetic risk factors, age, comorbidities and other health conditions.
Insurance and Pharmacy Benefit
Manager (PBM) Barriers
Step therapy, prior authorization, and other coverage requirements can delay or restrict access to the treatment a patient’s doctor recommends.
Financial, Geographic, and Practical
Barriers
Out-of-pocket costs, travel and limited access to specialized CLL care can make it harder for patients to receive timely treatment.
Five Actions to Help Every Patient Get the Right Treatment at the Right Time
To help close these gaps, the report outlines five priorities that can improve access to evidence-based, patient-centered CLL care and support ongoing patient advocacy efforts.
-
Ensure every treatment decision starts with the full picture
Expand access to comprehensive biomarker testing and ensure treatment decisions account for unique genetic risk factors, age, comorbidities and individual patient needs.
-
Close the gap between what we know and how we treat
Increase access to scientifically accurate treatment information for patients and healthcare providers, expand access to CLL expertise, and help ensure treatment decisions reflect the latest evidence and individual patient needs.
-
Connect more patients to specialized CLL expertise
Expand access to CLL expertise through telehealth, strengthen rural cancer infrastructure, and reduce geographic barriers that limit access to the latest care.
-
Reduce insurance barriers that delay or deny access to treatment
Address step therapy, prior authorization and other insurer and PBM barriers that can delay or restrict access to recommended treatment.
-
Increase transparency and promote responsible artificial intelligence (AI) in cancer care
Promote responsible use of AI to help patients access trusted information, while requiring transparency and appropriate clinical oversight when AI is used in coverage or care decisions.
THE CLL REPORT
Explore the Findings
Discover how access gaps in testing, treatment, insurance coverage, and affordability continue to impact patients despite significant advances in CLL care.
Understanding Blood Cancer Access Barriers at the State Level
Access state-level perspectives on barriers to blood cancer care and opportunities to improve access for patients across the broader blood cancer community
When Innovation Outpaces Access: Closing the Gap in Blood Cancer Care in California
When Innovation Outpaces Access: Closing the Gap in Blood Cancer Care in Florida
When Innovation Outpaces Access: Closing the Gap in Blood Cancer Care in New Jersey
