Hematology Survivorship Care Lags Behind Therapeutic Innovations: Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd

Despite recent treatment advancements, significant gaps remain in hematology survivorship care, as it is often unclear which provider or specialist is responsible, according to Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, a retired family physician, chronic lymphocytic leukemia (CLL) survivor, and executive vice president and chief medical officer of the CLL Society.

Yesterday, he shared his insights and experiences at the Patient-Centered Oncology Care® conference in Nashville, Tennessee, during the panel "To Survivorship and Beyond."

This transcript has been lightly edited; captions were auto-generated.

Transcript

From your experience as a family physician and now as a CLL advocate, what gaps have you noticed in survivorship care for patients within the hematology space?

When I was diagnosed in 2005 with CLL, survivorship wasn't even on the map. While we recognized that CLL is a very heterogeneous disease, and 30% or more of patients never need treatment and may have a normal life expectancy, patients who were treated for their CLL usually died of their CLL. Survivorship was not really on the table, because all therapies were essentially seen as palliative, with some wonderful exceptions, but for most patients. So, there wasn't a gap; there was nothing. It was all a gap.

Now, fast forward a decade, and we have these wonderful new targeted therapies, mostly oral oncolytics, some wonderful monoclonal antibodies, bispecific T-cell engagers, trials, and cellular therapies, and people are living longer and longer.

Over the last 10 years, every memorial service or funeral that I've attended for someone with CLL has not been because of disease progression but has been a complication of their CLL. Either they've died of an infection (most recently, a lot of people died of COVID-19 because CLL is a cancer of the immune system), or people are also dying of second malignancies. One out of 2 CLL patients has some kind of significant second malignancy. Recognizing this has meant that we have to start looking at survivorship, but the gap has been, who's going to pick this up?

Primary care doctors are generally afraid of cancer patients, especially hematologic malignancy cancer patients. It's complicated, and they're afraid to make the wrong move. Then, you add maybe a cellular therapy, or a bone marrow transplant to that patient, they're really frightened that they're going to make the wrong move. Hematologist oncologists haven't really been trained, or have an expertise or interest, to be honest, in dealing with survivorship. The ball gets dropped, unless it's an academic center or a community center that has a survivorship team; there's huge gaps in this area.