Q4 2020 Poll
During the fourth quarter of 2020, CLL Society conducted a poll among readers of The CLL Society Tribune about CAR-T therapy. There were 193 respondents.
CAR-T (Chimeric Antigen Receptor-T cell) therapy is an exciting cellular immunotherapy with the potential to treat many cancers, including chronic lymphocytic leukemia (CLL). Respondents answered questions regarding their understanding, thoughts on safety and effectiveness, and what they would like CLL Society to begin (or continue doing) to further educate patients and caregivers about this cutting-edge therapy.
Of the respondents who completed the survey, 94% are CLL patients, 4% are caregivers, and 2% are healthcare providers. Half the respondents were male and half were female. The average age of respondents was 65, and the age range was 32-88 years of age. Regarding race and ethnicity, 94% of respondents identified as White or Caucasian, 3% as Hispanic or Latino, 1% as Indigenous, American Indian or Alaskan Native, 0.5% as Asian American, and 1% prefer not to say. In terms of treatment status, 41% are treatment naïve or watch & wait, 27% are undergoing or have completed their first treatment, 30% are undergoing their second treatment or have completed two or more treatments.
Respondents were equally split with 49% who strongly agree or agree that they are confident in their understanding of how CAR-T therapy works.
A lower percentage of respondents (36%) are confident in the safety of CAR-T therapy, while 50% of those surveyed responded neutral to this question.
In terms of effectiveness, 51% of respondents feel confident in the effectiveness of CAR-T therapy.
A lower percentage of respondents (37%) are confident in their understanding about when one should seek a clinical trial for this therapy.
The vast number of respondents have not yet had CAR-T therapy. Only 4% of respondents have received CAR-T therapy.
Only 11% of respondents are considering CAR-T therapy as their next line of therapy, while 45% responded no to this question.
What would you like to see CLL Society do to help further CAR-T therapy knowledge or access for CLL patients?
In response to this question, suggestions included many positive comments regarding the continuation of educational activities that CLL Society is already providing. Some of these include inviting expert speakers for virtual events with audience Q&A, written articles by experts, bringing in the patient voice by incorporating their experience while undergoing CAR-T therapy, reporting on the latest news and advancements, as well as identifying a current list of sites that are conducting CAR-T therapy.
Respondents requested more information about where CAR-T therapy fits best into their treatment plan (specifically requesting the creation of a flow chart that would help them make individualized decisions about CAR-T therapy), why CAR-T therapy may not be successful, and to better understand the potential risks and benefits of this treatment.
Other comments include advocating for the use of CAR-T therapy earlier on in the treatment landscape as opposed to after all other treatments have failed, advocating for approval from the US Food and Drug Administration (FDA) for CAR-T therapy to be approved for use in CLL outside of clinical trials, as well as advocating to make CAR-T therapy more affordable and approved by Medicare.