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 Published content may become out-of-date as new information and data emerge.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
Golf, 25 Years of CLL, and Long Remissions
Terry Evans, Director of CLL Society Support & Education Network, shares his CLL journey, experience with clinical trials, and his later-in-life love of golf.
Remembering John Backus
It is with deep sadness that we honor the late John Backus, a cherished member of CLL Society’s Board of Directors and a champion of our mission.
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.
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
CMS Releases A New “Model” To Lower Medicare Spending, But It Likely Will Increase Beneficiary Costs
Known as GUARD (Guarding US Medicare Against Rising Drug Costs), the model is envisioned as a demonstration project operated by the CMS Centers for Medicare and Medicaid Services’ (CMS) Innovation arm for Part D drugs.
CLL Society Leads Rare Cancer Patient Organizations In Writing to CMS With Concerns About Technical Program Details Overwhelming Patient Ability to Get Treatments Prescribed by Physicians
CLL Society Leads Rare Cancer Patient Organizations In Writing to CMS With Concerns About Technical Program Details Overwhelming Patient Ability to Get Treatments Prescribed by Physicians
Medicare Drug Price Negotiations and What They Mean for CLL Patients
CLL Society actively participated in negotiations surrounding acalabrutinib, making sure the federal government understood the benefits of treatment.
UPCOMING EVENTS
Friday, March 6, 2026 at 10 AM PT / 1 PM ET
Dr. Ryan Jacobs and Doreen Zetterlund joins us for CLL Society’s “Ask Me Anything” virtual event. With no prepared presentation, this event is truly dedicated to answering your questions. Dr. Jacobs joined the Levine Cancer Institute in Charlotte, North Carolina, in 2015 as an Associate Professor of Internal Medicine, where he has served as a chronic lymphocytic leukemia (CLL) and lymphoma specialist and is the Director of the Lymphoma Division.
Wednesday, May 27, 2026 at 11:30 AM PT / 2:30 PM ET
Join CLL Society for an engaging and practical webinar designed to help people living with CLL take an active role in their care. In this session, Dr. John Burke and CLL patient advocate Christina Fisher will discuss the importance of shared decision-making, an approach in which patients, clinicians, and often care partners work together to choose treatments that reflect both the best medical evidence and what matters most to the individual.
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
Epcoritamab Combination Therapies for Richter Transformation
Half of patients with Richter transformation responded to treatment with epcoritamab, and outcomes were even better when it was used as a first-line therapy.
Epcoritamab for Richter Transformation
Half of patients with Richter transformation responded to treatment with epcoritamab, and outcomes were even better when it was used as a first-line therapy.
Dual BTK Inhibitor Rocbrutinib for Relapsed CLL
Rocbrutinib appears to be effective in CLL patients with prior exposure to covalent and noncovalent BTKi, and it is generally well-tolerated.
Equitable Access and Regulatory News
FDA Approves Combo of Acalabrutinib and Venetoclax in CLL
The FDA has approved acalabrutinib and venetoclax as the first all oral combination for previously untreated CLL patients based on the AMPLIFY trial data.
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.