As new and better treatments are developed to treat Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL), testing for subtypes of the disease is becoming more important for prognosis and selection of the best treatment options.
In this study presented at the American Society of Hematology’s Annual Meeting and Exhibition (ASH 2021), the researchers evaluated 3,037 patients for:
- Testing frequency
- Timing of testing
- The factors associated with receiving testing such as age, sex, ethnicity, geographic location, insurance type, and treatment in a community versus academic clinic
- All patients were over the age of 18, had a new diagnosis of CLL/SLL, had more than six months of continuous enrollment, and had no prior treatments from January 2014 to May 2021.
- The median age was 73, 62.3% were male, and 74.6% were white. These numbers are quite representative of the total CLL/SLL population.
- Tests included:
- Immunoglobulin Heavy-chain Variable region gene (IgHV) mutation status
- FISH (fluorescence in situ hybridization)
- High-risk markers included: Unmutated IgHV, deletion (del) of (11q), del(17p), and CD38 present.
- The majority, 92%, of patients received treatment in community practice settings. Of these, 51% had commercial insurance, while the rest had government or other coverage.
- More than HALF of patients did NOT receive testing. Of those who did receive testing, 99% had it performed prior to treatment.
- Of those with the high-risk marker, del(17p), 26.4% received chemotherapy that was almost certainly of no value (but is still toxic) instead of newer and better treatment options such as ibrutinib, acalabrutinib, or venetoclax.
- This was also true in 39.8% of patients who were not tested. This is unforgivable.
- Sub-optimal testing was more common in the vulnerable or high-risk groups.
All patients with CLL/SLL must have appropriate testing prior to deciding upon any treatment option to understand their prognosis better. And, more importantly, receive the best possible treatment. Sadly, this is still not happening.
SMART PATIENTS GET SMART CARE! Ask your doctor for these critical tests. Be your own advocate. Get a second opinion from a CLL expert. Print out CLL Society’s simple one-pager on what testing you need to have done, and show it to your doctor at your next appointment.
For more background information on testing, see this link: TEST BEFORE TREAT™.
For those new to CLL/SLL, here are some primary treatment-related FAQs.
You can read the original ASH 2021 abstract by Asher Chanan-Khan, MBBS, MD from Mayo Clinic at https://ash.confex.com/ash/2021/webprogram/Paper147955.html.
It is disappointing to see how little progress has been made in ensuring patients being treated in the community are getting the best management for their CLL/SLL.
Stay positive and safe. We are all part of an excellent organization for hope, help, and education.
Michael Green, MD and CLL patient