Challenges Managing Cold Agglutinin Disease

A panel of clinicians and payers highlight challenges that impact the treatment of a rare autoimmune hemolytic anemia, cold agglutinin disease.

Neil Minkoff, MD: We started talking about how it used to be the triple aim, but now it’s the quadruple aim. One of the pieces of the quadruple aim is the patient journey, but the other is the physician journey, or the clinician journey. Normally at a point like this, when we’re thinking about a disease state, we thinking, what are the pain points? What are the points of inflection during the patient journey? We’ve started to think about that in terms of how those pain points impact how a clinic might be impacting the patient journey? I’m going to throw this open. I’ll start with Dr Jeremy Gleeson, but then I want to bring our clinical folks in. What do you think are the pain points in the management of cold agglutinin disease? I’d like to see how your pain points might differ from the clinical practicing pain points.

Jeremy Gleeson, MD: With this and other chronic diseases, particularly rare chronic disease, there are going to be pain points. Clinicians and payers share the same overall objectives—a healthy patient—but there can be nuances where there are pain points. Ask any clinician about a prior authorization process, and they won’t be enamored of it. There are going to be pain points trying to interface the clinician, their knowledge of the patient, and the payer’s need for perhaps more objective evidence that something is working. Around treatments, particularly high-cost treatments, there are going to be pain points that we’re familiar with in other diseases. I don’t think this 1 would be any exception, for a clinician to satisfy a payer that this is an expensive treatment that’s benefiting the patient. It’s not always going to be a smooth and easy process to do that.

Neil Minkoff, MD: Our clinical folks?

Jeremy Lorber, MD: Half the battle and half the pain is prior to diagnosis, so the delay in diagnosis. But once we achieve a diagnosis, some of the pain points are the patient that was mentioned earlier who may not have a significant anemia but has maybe a slight anemia, who has fatigue. It’s very hard to differentiate fatigue from CAD [cold agglutinin disease] vs fatigue from what all of us probably experience every day. That borderline case is deciding when to pull the trigger on treatment vs not. The other pain point is, and we’ll get into treatments later in more detail, what to do if initial treatment doesn’t work. This is a rare disease. We don’t have really many approved treatments. Treatments that we typically use have limited data, typically single-arm, nonrandomized. It’s a condition for which we don’t have many tools that have strong data behind them.

Mihir Raval, MD, MPH: I always worry about when to pull the trigger to use the chemotherapy-immunotherapy combination rather than just immunotherapy drug. Sometimes, you may have a patient who’s younger and you start thinking, do I really want to give the patient chemotherapy and deal with the long-term complications of chemotherapy? Some chemotherapy agents can cause treatment-related hematological malignancy like MDS [myelodysplastic syndrome] or leukemia. You always have that in back of your mind: are the symptoms enough for me to justify a combination treatment use and then put the patient at an exposure to these long-term complications from this chemotherapeutic agent?

Transcript edited for clarity.

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