The right testing can make a significant difference in AML treatment, personalizing care for patients. Dr. Sangeetha Venugopal shares an overview of the essential tests performed following an AML diagnosis, how molecular testing helps to determine treatment options, and why repeat testing may be needed as the disease changes over time.
Dr. Sangeetha Venugopal is Assistant Professor in the Department of Internal Medicine and Division of Hematology at the University of Miami. Learn more about Dr. Venugopal.
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Transcript
Katherine Banwell:
Dr. Venugopal, are there barriers to accessing the latest AML treatments? If so, how can patients advocate for themselves?
Dr. Sangeetha Venugopal:
I would say the main barrier to the latest AML treatment, the first barrier is not getting comprehensive genetic and molecular testing fast enough. The second barrier is where the patient is being treated. Most often than not, patients treated in larger academic centers are more likely to have rapid testing, specialized supportive care, and trial availability. The latest AML options are still more concentrated at referral centers with leukemia-specific expertise compared to our community colleagues. That’s the second barrier.
The third barrier is definitely cost and insurance friction. Patients may face high out-of-pocket costs for oral targeted drugs, supportive medications, travel, lodging, transfusions, and time away from work. Financial barriers are structural and not just personal, and this can delay or narrow treatment choices. The fourth barrier, I would say, is clinical trial access. Many of the most cutting-edge AML treatments are concentrated in academic centers, and they are available first through trials. Enrollment can be harder for patients who are older, live far away from major health centers, have lower health literacy, face transportation issues, or are treated in systems with fewer research openings. That’s definitely one of the barriers that I would say is important to address. The sixth barrier and the other thing that I would say is the supportive care infrastructure.
Even when the anti-leukemia drug exists, access can still depend on transfusion support, infection management, transplant referral, pharmacy coordination, and rehab. This is really, really important. The most effective form of self-advocacy in AML is to ask for clarity, speed, and options. I always tell my patients, “I’m going to give you a list.” This I learned from my mentor, Dr. Garcia-Manero, who used to say, “Okay, I’m going to give you this list, and next time when you come in, you have to ask me these questions – if I did it or not.” That means asking for full genetic and molecular testing, when these results are expected, and if these results could change their treatment. It’s also reasonable to ask for a second opinion from an AML specialist, especially at diagnosis, relapse, or before transplant decisions, because this is really, really important.
One thing our patients should know is that self-advocacy is not about delaying urgent care. It’s about making sure their treatment plan reflects leukemia-specific expertise.
Katherine Banwell:
How are ongoing gaps in AML care being addressed? Are there resources available that patients and care partners should know about?
Dr. Sangeetha Venugopal:
Definitely there are resources available, especially Blood Cancer United and other patient advocacy organizations. I would say the biggest ongoing gaps are not just that we need more drugs.
That part has improved a little bit. However, the care is still uneven in patients. Again, I know I’m just beating the same old drum, in who gets rapid molecular testing, who can access expert centers and trials, how well older or frailer adults are served, how supportive care is handled, and how survivorship is managed after treatment.
Even in this era, precision medicine is still not reaching everyone fast enough. The turnaround time remains a care gap. Older and frailer adults remain the least well served. Definitely in this aspect treatment has definitely improved. However, we still need to make nuanced decisions about how we are treating them with better tolerability, whether we are modifying the dose accordingly, and all that needs to be teased out. The other thing, this is very important for me because supportive care is really important. The top supportive care gaps are infection management, bleeding prevention, transfusion thresholds, frailty assessment, nutrition, exercise, and the timing of palliative care. These sound very simple. However, these are huge gaps in AML management, I would say.