AML Clinical Trial Access: How You Can Overcome Key Barriers to Care

Lisa Hatfield:

Dr. Khan, research shows that racial and ethnic minorities are still significantly underrepresented in AML clinical trials, despite having higher incidence rates of certain AML subtypes. Based on your clinical experience, what are the key barriers preventing equitable access to cutting-edge treatments, and how can newly diagnosed AML patients and their families proactively advocate for clinical trial opportunities?

Dr. Irum Khan:

Yes, Lisa this is a really important point, and one that a lot of people are working on at many different fronts, because it really requires a multi-system change and a hard look at how we do clinical trials in this disease. In fact, there’s a manuscript that some of our colleagues have been working on that will hopefully soon be in press, specifically looking at clinical trial criteria and how some of the trial criteria for inclusion on a trial may inadvertently be exclusionary to certain populations and may not really be adding that much discriminatory value to who does well versus doesn’t do well. So they’re sort of paradigms that have kind of stuck with us, and values that have been carried, and that may not really be that important, or could be liberalized to make the trial more amenable to more patients.

One of the big ones, of course, where we’ve already seen quite a bit of movement is excluding HIV patients, for example. There’s been a lot of movement in trying to improve that anyway, but akin to that, looking at specific organ function, things that may differ based on race and ethnicity and trying to figure out which of those trial criteria can be modified, and if that, in fact, can promote more inclusivity in clinical trials. A lot of this work is led by Dr. Andrew Hantel at Dana-Farber, so I will put a plug in for the research they’re doing there, because I think at a high system level, that’s where it has to definitely start.

And not to say that there aren’t many fronts here, the other front is, of course, making that trial doable and kind of mitigating the barriers for enrollment at the level of the care delivery as well. So in terms of from the patient perspective, how a newly diagnosed patient and their family can advocate, I would say that my activation tip for the question would be to inquire. It starts with the patient and their family member just asking that, you know, we’ve discussed the standard of care options and their expected outcome, are there any clinical trials in this space that are promising, or that you think we should look into? And be open to seeking out that opinion, even if it means traveling somewhere.

Trials are becoming a lot more flexible in terms of shared care models, where, you know, you may have to go to your trial center, like, once a month or so. Initially, sometimes a little more so. But a lot of times  you know, doing a lot of the testing locally, especially for the more advanced clinical trials, some of those drugs are pills, and you just need the occasional lab draw. And a lot of trials are more and more providing support to patients for transportation and things, so no assumptions about the fact that you can’t do it, just ask, because knowledge can only help, and then, you know, you would have made a more educated decision.

I think the one other thing I will add here is that there are societies like Leukemia and Lymphoma Society (now Blood Cancers United), these are free organizations that often help with matchmaking with clinical trials, you know, they have their 1-800 numbers, they have their websites, you can get connected to a person that can help guide you towards centers near you which have clinical trials in a disease space that you’re looking at. So, there are free resources out there.