CLL Society
WHAT’S NEW
Your connection to the most current news, information, and data about Chronic Lymphocytic Leukemia.
We suggest you BOOKMARK this page and visit it often. All content was current as of the date it was published.
In science and in medicine, information is constantly changing. Published content may become out-of-date as new information and data emerge.
Living with CLL
My CLL Hangs on by a Thread: Stopping Epcoritamab
August 2025 marks two full years that I’ve enjoyed the benefits from my trial of epcoritamab, a bispecific T-cell-engaging monoclonal antibody for my CLL. But the last remains of my chronic lymphocytic leukemia (CLL) have remained stubbornly persistent for about a year and a half.
Remembering Jacques-Louis Binet (1932–2024): A CLL Pioneer
Until recently, researching CLL was a dead end in a hematologist’s career, but Dr. Binet and Dr. Kanti Rai changed that with their staging of CLL.
Choosing Positivity: Peter Titlebaum’s Journey with CLL
Dr. Ratner offers his memories through the lens of a physician with CLL who specializes in the care of older adults and as a Support Group facilitator.
A Charter for Improving Care for Those Living with CLL
People with CLL deserve accurate diagnosis, holistic care, and a voice in decision-making. This charter reflects input from patients, advocates, and experts.
Activity and Exercise Likely Improve Quality of Life in CLL
People with CLL benefit from exercise, likely improving quality of life, yet they are rarely “prescribed” it and are less active than their peers.
Dr. Ratner offers his memories through the lens of a physician with CLL who specializes in the care of older adults and as a Support Group facilitator.
WHAT'S NEW IN CLL / SLL
CareCast: Anchored in Knowledge: Navigating CLL at Sea
In this episode of CareCast, CLL Society’s podcast, we’re joined by Ed McNichol — whose career as a deep-sea imaging specialist often takes him out to sea for extended periods. Ed shares his story of navigating life’s unpredictable tides — balancing the demanding realities of his profession with the challenges of a CLL diagnosis. While frequently away from home, Ed found stability and empowerment through shared decision-making with his healthcare team and by connecting with CLL Society’s support groups, which he fondly describes as a “knowledge sharing community.” His journey is one of resilience, adaptability, and the power of staying informed and connected, even when life takes you far from familiar shores. Tune in to hear how Ed continues to chart his course with purpose, community, and hope.
Find CareCast on Spotify and Apple Music, in addition to the CLL Society website.
ADVOCACY AND POLICY
Medicare Prescription Payment Program (MPPP)
CLL Society joined with many patient organizations in calling on the Centers for Medicare and Medicaid Services (CMS) to report to Congress on uptake of the Medicare Prescription Payment Program (MPPP).
CLL Society Recognizes Difficulties in Clinical Trial Participation
CLL Society stands with our patients in demanding transparency and patient protections in CMS’ new program to allow out-of-pocket costs to be spread across a plan year in Medicare Part D.
Medicare Prescription Payment Plan Appropriations Sign-on Letter
CLL Society stands with our patients in demanding transparency and patient protections in CMS’ new program to allow out-of-pocket costs to be spread across a plan year in Medicare Part D.
UPCOMING EVENTS
Wednesday, January 14, 2026 at 9 AM PT / 12 PM ET
Join CLL Society for our virtual event ASH 2025 Comes to You! The American Society of Hematology Annual Meeting had important research presented and now Drs. Adam Kittai and Brian Koffman will highlight findings that you should know about when considering future treatment options.
This webinar and discussion will be slightly advanced, but we invite everyone to join and learn.
On-Demand Replay
If you missed the recent Q&A-style Facebook Live event “Ask Me Anything” with Dr. Meghan C. Thompson and patient advocate Michele Nadeem-Baker, you can catch the replay here!
If you missed the recent webinar with William A. Werbel, MD, PhD and Brian Koffman, MDCM (retired) MS Ed on Protecting Against Infections When Your Immunity Is Impaired, catch the replay, presentation slides, and transcript here! Watch now!
Treatment Updates
Stopping BTKi if No CLL Progression Boosts Quality of Life
CLL patients who received BTKi and stopped therapy for non-CLL progression reasons reported an improved quality of life and prolonged time off treatment.
Guiding CLL Therapy with Measurable Residual Disease Testing
MRD-guided ibrutinib-venetoclax significantly improved outcomes for previously untreated patients with CLL compared with ibrutinib or chemoimmunotherapy.
Ongoing Trial: Adding Venetoclax to BTK Inhibitors for CLL
An ongoing phase 2 clinical trial is testing whether adding venetoclax to first-line BTK inhibitor therapy can deepen remissions for CLL patients.
Equitable Access and Regulatory News
FDA Okays Pirtobrutinib Post Covalent BTKi Treatment
On Dec. 3, 2025 the FDA gave full approval to pirtobrutinib for use in chronic lymphocytic leukemia (CLL) after treatment with a covalent BTK inhibitor.
Medicare Telehealth Update
Unless Congress takes further action, these pandemic-era flexibilities are set to expire on January 30, 2026. Please review the official document we’ve included for more details. We will keep you updated as Medicare policies continue to evolve.
Most CLL Patients with Medicare Can No Longer Use Telehealth
Most CLL patients with Medicare can no longer use telehealth as of Sept 30, 2025