Elevate | What You Should Know About Your Role in AML Treatment and Care Decisions

Elevate | What You Should Know About Your Role in AML Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

How can you elevate your AML care and treatment? AML expert Dr. Gail Roboz discusses the importance of participating in AML treatment decisions, reviews key factors that may impact therapy options, and shares advice for advocating for yourself.
 
Dr. Gail Roboz is director of the Clinical and Translational Leukemia Programs and professor of medicine at Weill Cornell Medicine and the New York Presbyterian Hospital. Learn more about Dr. Roboz.
 

Related Resources:

FLT3 inhibitors for AML Update

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions

Expert Advice | Managing AML Symptoms and Treatment Side Effects

Expert Advice | Managing AML Symptoms and Treatment Side Effects

Transcript: 

Katherine Banwell:

Hello, and welcome. I’m your host, Katherine Banwell. It’s no secret that the quality-of-care patients receive can vary, and patients who are educated about their condition and involved in their care may have improved outcomes. That’s why the Patient Empowerment Network created the Elevate series, to help AML patients and their care partners feel well-informed when making treatment decisions with their healthcare team. 

In today’s program, an AML expert will join us to share advice for accessing better overall care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining us is Dr. Gail Roboz. Dr. Roboz, would you please introduce yourself? 

Dr. Gail Roboz:

Absolutely. Thank you so much for having me. My name is Gail Roboz. I’m a professor of medicine and director of the clinical and translational leukemia programs at Weill Cornell Medicine and the NewYork-Presbyterian Hospital in New York City. Thank you again for having me. 

Katherine Banwell:

Well, thank you so much for joining us today. We really appreciate it. I’d like to start by discussing your role as a researcher. You’re on the frontlines for advancements in the AML field. What led you here, and why is it important to you? 

Dr. Gail Roboz:

So, I’m actually asked that question quite frequently, because AML is a challenging, difficult, scary disease, and people don’t necessarily assume that somebody in medical school would gravitate toward it. 

But I have to say that what is incredibly fascinating back then and now about leukemia is the continuous access to the disease. Patients will maybe giggle or groan as I’m saying that, because you can get a blood sample really anytime. You can even get a bone marrow sample anytime, although patients don’t enjoy that so much. 

But from a research perspective, it is absolutely extraordinary to be dealing with a disease where you can, in real time, truly run back and forth to a laboratory and see what’s happening, what is the new drug or the old drug doing, what’s happening with the patient, and I would say that from a fascination of a medical student perspective that grabbed me then and still does today.  

Katherine Banwell:

When it comes to choosing therapy for AML, it’s important to work with your healthcare team to identify what will work best for you, the patient. So, I’d like to know how you define shared decision-making.  

Dr. Gail Roboz:

The problem with AML sometimes is that it can be such an acute, emergency-type of presentation and urgent decision-making that I think your question is almost right out of the gate for some patients that will, “Wait, I don’t even have a minute, here. How do I build a team, do the research, look online if people are telling me that I’m in the middle of an emergency?”  

That isn’t always the case for acute leukemia, but it sometimes is. I think that what happens in AML in particular for patients is a building of knowledge and a building of the team, and figuring out, first of all, where am I when I am being told this diagnosis, and is it really an emergency? Do I have to make decisions really right now, because is it life-threatening today, I don’t have time to look around? Or do I have a minute to pause and get more information? 

I definitely feel that with the Internet era and with so much connection between doctors and teams, there is much more ability to reach out instantaneously for doctors, too, to get advice on a patient who might be in a smaller hospital that doesn’t have AML experience. But I think that the first thing is to try to figure out very, very quickly, what needs to happen to me as a patient immediately, and what can wait a minute, so that I can figure out what am I being told, and what are my options?  

Katherine Banwell:

Right, right. It can be confusing for patients, just finding out this new information. Part of making care decisions is setting goals. What are AML treatment goals, and how are they determined?   

Dr. Gail Roboz:

I would say that leaving cure on the table from the beginning is always a good place to start, because you want to figure out, first of all, what am I dealing with? What are the actual options?   

But when AML strikes, and a patient who has multiple medical conditions or comorbidities that are truly compromising function independently of the diagnosis of AML, that’s going to be a special path of what is actually reasonable for someone who is terribly medically ill or otherwise frail right from the beginning? That can be defining goals, but I think from the beginning, the best thing is to leave everything on the table. What can actually be done to make me better, first of all, to get me out of my immediate trouble? What can be done to make me better, and if I’m getting better, well, I like that, how do I stay there?  

What can be done to hang on to the state of ‘better,’ which is sometimes defined as remission? In AML, the goal is to get the bone marrow working again, functioning again, get rid of the acute emergency problem, if there is one, which there may or may not be in acute leukemia. 

Sometimes it’s truly an emergency, and sometimes it isn’t. But once I get better, can I stay there? What is required to keep me with a working bone marrow for as long as possible? 

But once you are starting to sort through the diagnosis, you realize that saying that somebody has acute myeloid leukemia is not telling me nearly enough information. This is a disease that is what we call biologically heterogeneous, which means there are lots of different forms. It’s like saying you’re sick. What exactly does that mean? There are lots of things that can make you sick. There are lots of different subtypes of AML, and fairly quickly in most institutions, we start getting back some information specifically on the subtype and biological characteristics of the disease.  

This can be very, very important in the initial treatment planning, and depending on where you are, the information that you get back can sometimes take 24 hours, 48 hours, 72 hours, a week. So, you start learning very quickly though that, “If I’m not in a complete emergency that requires instantaneous treatment, can I get back more information about the biological subtype of the disease so that I can start treatment planning of what is my best option right out of the gate?” That’s usually called induction, or the first therapy that you’re going to get with the goal, ‘getting rid of leukemia cells and getting into remission.’ That’s part one, and then everything that comes after that is about keeping you in remission.  

But for the initial goal, what is the therapy that the patient needs to get to get into remission? In order to figure that out, the good news is there are a lot of different ways to slice and dice getting into remission, and actually, it used to be such a weighty decision. 

Now, I would actually encourage people to – not relax, you can never use the word ‘relax’ with acute leukemia. But there are several different induction strategies for most patients that would be okay.  

So, even if you get started with one strategy and you hear five days later that another doctor might do something different, there are a lot of ways to safely get into remission. I think everybody should be pleased about the fact that we’re doing much better than we used to for patients across the board, all the way from children to much older adults, to safely getting people into remission. 

Katherine Banwell:

Right. So, what sort of factors then do you take into consideration when you’re choosing a therapy? 

Dr. Gail Roboz:

So, out of the gate, there are the patients that I think I referred to earlier who truly, truly are in situations based on their other diseases that there are certain treatments we would just cross out right out of the gate.  

If there are patients with very, very severely compromised cardiac or renal or lung function or are terribly ill from other conditions, AML doctors will right out of the gate for those patients eliminate certain treatments. But absent that scenario, what we try to look for is the biology of the disease. Not look at the age, not look at the comorbidities unless they are so severe that they make obvious certain choices. 

But rather, what I like to do is say, “What kind of AML is this, and what is the best treatment that I have to get this patient into remission?” And then ask the question, “can this particular patient handle this therapy?” Sometimes, these days, there actually may be more than one route to get to remission depending on the biology of the disease, and then, if that’s the case, then I can start getting picky and look at the individual patient. Where does the patient live? Who’s the patient’s family? What other diseases has the patient been treated for?  

Is there something that I can use? If I have a choice, if there are a couple of different things that might work, how do I fit the treatment to best take care of the needs of this particular patient? If I don’t have choices, then my question is, “Okay, how do I get this patient through my one therapy that I think is the truly, truly best option?” 

Katherine Banwell:

Okay. I’d like to turn to test results for a moment. What sort of tests should be done following an AML diagnosis?  

Dr. Gail Roboz:

We often generally recommend a bone marrow biopsy, even if we know we can make the diagnosis from a blood test, because even though the bone marrow biopsy is not the most fun test in the world, it does offer better information for follow-up care than what you can get initially from the blood. 

So, every once in a while, we do have a patient for whom a bone marrow biopsy itself for whatever reason can’t be done. But almost always, we need a bone marrow biopsy, and on that biopsy, you’re going to look under the microscope and see what the cells look like. You’re going to get back standard testing, which is called flow cytometry, which is going to tell the difference between what are the different cells that you’re seeing under the microscope. 

But then you’re actually going to get progressively much more fancy testing, including things called chromosomes or cytogenetics, and then ultimately, the majority of patients, if at all possible, will be having mutational testing to identify certain subgroups of AML that benefit from very particular treatments. Next-generation sequencing, PCR, fusion proteins, FISH, cytogenetics, I can go on and on with all kinds of terminology that is very confusing, even to hematology fellows, let alone to patients.  

Usually, we use a combination of tests to decide, “Is this patient likely to be able to be cured with chemotherapy alone, or might this patient benefit from a stem cell transplant from somebody else after they go into remission?” 

That’s basically what the prognostic scoring systems used to be asking, but now it’s a lot more complicated than that. Because even in the favorable categories, even in the adverse categories, where there used to be very little subtlety, now there is a lot of subtlety. 

It’s all about defining getting into remission, and what do I give you once you’re in remission to keep you there? It’s no longer this windshield wiper thing of good, bad, transplant, no transplant. There’s a lot more to AML than there used to be. 

Katherine Banwell:

I’d like to add that if you, the viewer, are interested in learning more about AML testing and treatment, PEN has a number of resources available for you. You can find these at powerfulpatients.org/AML, or by scanning the QR code on your screen.  

Before we get into specific treatment types, Dr. Roboz, would you provide a brief explanation of the phases of therapy for AML? You mentioned induction therapy earlier. Would you tell us what that is? 

Dr. Gail Roboz:

Yeah. So, here, too, I have to say that it’s more confusing than it used to be for the following reasons. So, historically and currently, we typically talk about induction as the first therapy that you’re going to get to get into remission.  

Then, the treatment paradigm is you do something to get into remission; do some treatment to get into remission. After that, in the realm of post-remission therapy, there are different things that can happen. There can be something called consolidation, which might be another round of chemotherapy. Some patients get consolidation, some patients don’t. After consolidation, there can be a transplant.  

So, you get into remission, you may or may not get a little bit of what’s called consolidation chemotherapy, and then go on to a transplant. 

However, sometimes either after the transplant or after chemotherapy before ever getting or instead of ever getting a transplant, there might be ongoing treatment in a lower intensity ongoing basis that is called maintenance.  

So, you’ve got to think about it as induction as what happens first, consolidation is something that happens when you’re in remission, and then maintenance usually refers to ongoing therapy that is different from consolidation. 

It’s usually lower intensity, easier to take, oral types of treatment that may go on and on. And just to be incredibly confusing, it’s different from something like breast cancer, where often the patients are given, “You get six cycles of this, and then you’re done.” From AML, there’s actually often not that type of an obvious plan right out of the gate for the patient. 

The answer will be, “It depends.” It depends. It depends how your treatment looks at this point in time. It depends how you look at this point in time. 

So then, the patients say, “Well, aren’t you going to cure me of this? What are you doing? Aren’t you going to get rid of it?” So, historically, there are some patients who get cured with chemotherapy. They get chemotherapy to get into remission, they get some chemotherapy afterwards, and there’s a cure rate for some patients with that. The majority of patients who are cured with AML get an allotransplant, or a transplant from somebody else. 

Then there’s a whole group of patients where we’re asking the question now, is it possible to get those patients beyond five years – so in oncology, five years is typically defined as cure. Can we get some patients with ongoing therapy to that past-five-year mark without a transplant? That’s in the zone of the ‘coming soon.’ Don’t have a ton of patients in that group right now, but hopefully we will. 

Katherine Banwell:

You’ve mentioned some various treatment types that are used to treat AML. Can you share a brief overview of available treatments? 

Dr. Gail Roboz:

So, the terminology that we use is a little bit annoying, because it is a little bit general. We say intensive and not intensive. 

But historically, intensive chemotherapy referred to a combination of generally two types of agents, cytarabine (Cytosar-U) and an anthracycline, which is a class of chemotherapy, that either just those two together or in combination with sometimes a third or a fourth drug usually keeps people in the hospital for around a month. Not that the chemotherapy takes that long, but the treatment gets rid of basically a lot of cells in the bone marrow, good guys and bad guys, and it takes about three weeks for those normal cells to recover. 

So, a standard intensive induction for AML is often around three to four weeks in the hospital, somewhere between three and five or so days of chemotherapy up front, depending on exactly what the protocol is. The classic regimen is actually still called 3+7, three days of one drug, seven of the other. But there are many variations of that that work. 

The chemo is then stopped, the patient hangs out in the hospital, very frequently getting transfusions and antibiotics, and we wait for the bone marrow to recover.  

Another current path that many patients are getting – almost all older patients, with ‘older’ being defined not by a specific age cutoff, but often 75 and older, almost everybody agrees no longer gets the classic chemotherapy that I just described. At some institutions, that 75 is going down, and even 70 and 65 and above are getting a new type of therapy, mostly because the new type of therapy is working pretty well. That is a combination of something called a hypomethylating agent.  

Drugs like azacitidine (Vidaza, Onureg) or decitabine (Dacogen) in combination with a pill that has changed the landscape of AML more than any other called venetoclax (Venclexta). Venetoclax is a drug that is not exclusively used for AML. 

It actually was originally approved for another type of leukemia. But I think that not many people would argue with the statement that what has changed absolutely the face of AML treatment has been this drug, because it’s a BCL2 inhibitor. What it does is it actually – cancer cells and leukemia cells in particular are very, very good at staying alive.  

They don’t undergo cell death, they don’t want to die, and venetoclax brings down their forcefield so that those cells can actually undergo apoptosis and die. 

Venetoclax in combination with azacitidine or decitabine has transformed the care of the disease, because many patients older than 65 – and the median age of diagnosis of AML is around 68 to 70. So, many patients never were well enough to have the intensive therapy. They weren’t going into remission, and they weren’t having prolonged survival often beyond a few months. 

But now, those patients do actually much better with the combination of aza [azacitidine] and venetoclax. So typically, the induction path is going to be deciding who gets an intensive therapy backbone, usually associated with long hospitalization. Who gets a less intensive backbone – by the way, that is often associated with just the same hospitalization. So, that’s why I don’t love the term ‘low intensity,’ because that implies that it doesn’t work.  

It does, and it also implies that you’re not going to be in the hospital. You probably will, because in the same way as for the more so-called intensive therapies, getting into remission involves getting rid of bone marrow cells and waiting for the normal ones to recover. Even if you are a patient who is getting the venetoclax combined with the azacitidine or decitabine, which is typically called low intensity, you may very well be in the hospital for a month. 

Because depending on where you live and who your family is and how sick you might be, you will probably want us to watch you carefully during that first month, but it’s worth it. Because if you have a good chance of getting into remission, remission is what makes life better and life longer. So, we want to get patients into remission, even if it means upfront time in the hospital. 

Katherine Banwell:

You mentioned one inhibitor as targeted therapy, but there are a couple of others. Would you briefly tell us about those? 

Dr. Gail Roboz:

So, over the years recently, we have identified certain specific targets in AML which are resulting in the addition of medications on these standard backbones. So, the target for venetoclax is something called BCL2, and actually, venetoclax probably makes all chemotherapy better. It’s kind of a controversial statement, but I’m going to stand by it. But in AML, it has been shown that the addition of venetoclax to lots of different backbones makes them work better. There are other things to hit, though.  

For example, there are patients with AML who have something called a FLT3, F-L-T-3 mutation. This mutation also has specific inhibitors that are FDA-approved drugs that target specifically the FLT3 mutation, and if you have one of those, your doctor may add on a FLT3 inhibitor to either a lower intensity or an intensive backbone. Similarly, there are agents called IDH inhibitors. There are IDH1 and IDH2 inhibitors. 

If I start getting into isocitrate dehydrogenase pathways on this webinar, I think everybody will click off, because it’s certainly bored all of the medical students in med school, and it’s pretty tough to understand. But the bottom line is it’s very cool stuff because that boring pathway in medical school that nobody really thought about too much is actually part of very, very, central cellular functions that are a vulnerability now that have been identified in leukemic cells that, if you hit them with these specific inhibitors, patients do better.  

Now, couple of things for patients. It doesn’t mean that it’s better to have a FLT3 or an IDH mutation because the targeted therapies are available. So, a lot of patients are disappointed when they don’t have mutations. I don’t want you to think in that way. It’s not that it’s better, it’s different.  

It identifies a different biology. If you have certain mutations, there are certain medications that may help you more.  

That’s why I think the patients are learning quickly, too, to ask the doc – they may not remember the letters of the alphabet soup, but “Do I have something about my AML that can get one of these targeted therapies added on?” I think is a good question to think about. “Do I have something about my disease that has a specific drug that we’ve already learned makes outcomes better?”  

Katherine Banwell:

There’s a new emerging therapy as well. Is it the menin inhibitor? 

Dr. Gail Roboz:

I think that, in understanding different targets and different pathways, it leads me to a general statement that if you can get yourself potentially onto a clinical trial at an academic center, that is something to consider right out of the gate. Because there is a lot, a lot, a lot going on in this field right now. 

What we are hoping, and the reason that I am talking to you about venetoclax and FLT3 inhibitors and IDH inhibitors, is because of all the patients who jumped onto those clinical trials and proved that those drugs are better. Some of them are my patients! I was fortunate on some of those early trials to have some real winners in patients who got onto the trials. They’re the ones who drove the success. 

So, for example, menin inhibitors, which are very, very exciting, targeted agents for NPM1 and KMT2A mutations and rearrangements – these are complicated to remember as a patient, but there’s a cool drug out there that might be for you. I think that patients who really think about asking the question wherever they are, the “Hey, I just got a diagnosis of AML. Is there a clinical trial that might look good for me?” I think is a great question to ask pretty much out of the gate. 

Katherine Banwell:

The symptoms of AML as well as the side effects of certain medications can vary greatly among patients. So, how do you approach symptom management with your patients? 

Dr. Gail Roboz:

Patients will giggle because I repeat this line. You have to be afraid of the disease, not the treatment. I think that if you read the package insert on a Tylenol, you’re certainly not going  to think you’re going to live for more than 20 minutes if you take one of those. You can certainly appreciate that, with chemotherapy drugs and including some of the novel agents that I’m talking about, if you read package inserts and look at some of the signs and symptoms and things that can happen, it’s extraordinarily overwhelming. 

I think that a lot of what I do for patients is I keep them close. Because if the patient is in the hospital or coming in very frequently in clinic, I think that that everyday assessment of, “What are you experiencing?” and “What can I tell you is the disease’s fault, and what can I tell you is the medication’s fault?” is so, so important. 

Especially in the newly diagnosed patients, where the disease is active. Of course, we want to try to minimize anything that we can do to make the process better for patients, more comfortable for patients, but there are certain things that we do tell people, “You’ve got to slug through this particular problem, because this is the disease’s fault.” This is different from a patient in remission, where they might be getting ongoing therapy with something, or we say, “Hey, wait a minute. You’d be feeling fine, except now you’re taking this medication. How do we minimize messing up quality of life in remission?” 

Because we want you to feel great when you’re in remission. I think the real answer of that is to have a really close collaboration with the healthcare team, and for the patients to really understand – I repeat this because it’s so important. What is the disease’s fault, and what is the treatment’s fault? If there’s something that is therapy-related, do I have a substitute or do I not have a substitute?  

Because if the drug is essential to get us where we need to go, well, what can we do to manage comfort and to manage symptoms until you get to the place where your marrow is working again? 

Katherine Banwell:

That’s great advice, Dr. Roboz. I would like to get to an audience question that we received prior to the program. This one comes from Johanna. “How can I better understand my lab test results? What questions should I be asking my provider about those results?”  

Dr. Gail Roboz:

One of the things that I would say to patients is to be careful when interpreting your own results, because I really am not exaggerating to say that patients have had absolute trauma looking at things that I look at it and say, “Oh, this looks great.” So, the first thing is, be careful being your own doctor. 

The second thing though is that the author of the question has to understand that there’s going to be a tsunami of data coming in with respect to AML treatment. Sometimes in the hospital on a daily basis when you’re in the middle of an induction, there is a true – tsunami is the right word – a deluge of data, and you have to work with your team to say, “What am I following here? What’s important at this phase in my treatment? What’s the number I’m looking at?” Patients sometimes tell me, “I don’t want to know any of this,” and I’m fine with that.  

I think it’s actually okay. Sometimes patients will say, “Give me guidance,” and I will be specific. Because you can actually have a leukemia induction patient where every single laboratory value is abnormal. They might be getting pushed to a device, in the morning, sitting in the hospital on your iPad, 50 abnormal results. You’re trying to battle back the disease and be positive and advocate for yourself, but there are 50 abnormal results in front of you. 

I think you have to really work with the team to say, “What am I looking at today? What are the numbers that are the really important ones? There are 50 abnormal ones here; everything is getting a yellow or a red light in this. How do I go through this?”  

And to appreciate, also, that at different points in the treatment, the beginning of treatment induction post-remission therapy, you’re looking for different things. So, work with your team so that you’re not assessing every single result with equivalent weight, because I think you’re going to stress yourself out.  

Katherine Banwell:

That’s great advice, Dr. Roboz. Thank you. As we close out the program, I’d like to find out what you would like to leave the audience with. Why are you hopeful? 

Dr. Gail Roboz:

AML is changing incredibly rapidly. And  I can tell you it is a lot more fun to be an AML doctor now than it used to be, with respect to what I am offering for patients. We have always fought really, really hard to have our wins, but we’re winning more. I do think that it is a complicated space to navigate for patients, but there is room for a lot of optimism. 

I think we are getting patients transplanted  –  patients that we never thought would ever go through a transplant or getting transplanted. Patients who never had a chance of even living more than six or eight months or living much longer than that. Is it perfect? No. Do we have as many cures as we want?  

No, but there’s a lot going on. I think if patients feel that excitement, they will also feel the need to ask about those clinical trials. Because I think that for a lot of patients, clinical trials is an area where they would be worried. They’re not sure that they want to. “I don’t want to be a guinea pig,” and yet here I can say in the AML space, one after another after another drug approvals in the last several years, with the patients on those trials being awfully happy that they participated. 

So, I think that it’s a very, very terrifying diagnosis. There’s nothing that I can do to take the sting out of that. But try to find yourself in an optimistic place with options that are being offered to the very, very, very best that we can do. There are patients who are listening, I’m sure, who have relapsed or refractory disease who are not feeling that optimism. 

I want to address you specifically, because we don’t have enough yet. We’re trying. When you have AML that has come back or come back multiply, that’s dangerous and difficult. But for those patients in particular, try really hard to get onto clinical trials. If the drugs that we have out there – if you’ve already taken them and they haven’t worked for you or if they’re not serving you well, if you’re in good shape and the drugs that we have aren’t good enough, well, let’s see if we can get you on something that’s investigational. 

Katherine Banwell:

Dr. Roboz, thank you so much for taking the time to join us today. 

Dr. Gail Roboz:

Thank you for having me. 

Katherine Banwell:

I also want to thank all of our collaborators. To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.  

Why Is Shared Decision-Making Important for AML Patients?

Why Is Shared Decision-Making Important for AML Patients? from Patient Empowerment Network on Vimeo.

What makes shared decision-making vital for acute myeloid leukemia (AML) patients? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School  discusses his approach to shared decision-making, the roles of patients and families, and proactive patient advice for the practical side of treatment risks and benefits.

[ACT]IVATION TIP

“…when your doctor’s talking to you about the risks and benefits of a treatment…ask them to talk to you about what does this mean in terms of maybe getting towards a milestone that you want to be around for and also we’ll be able to go to in terms of how healthy you are, side effects you might have, need to be in the hospital, all those different kind of things that I think are easy to get lost when we see somebody either in a hospital bed or in a clinic room that’s kind of spaced away from where they are and where they live all of their life.”

Download Resource Guide | Descargar guía de recursos

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Transcript: 

Lisa Hatfield:

Dr. Hantel, how do you involve your patients and families in the shared decision-making process?

Dr. Andrew Hantel:

So shared decision-making is a complex subject, and I think the first thing I always like to do is to really just start off the conversation as much as we can. Just asking the person about who they are, who their loved ones are, what’s important to them. I think setting up the conversation that way really dictates a lot of the decisions that get made, because it helps me kind of understand who’s coming in to see me, what they find important in life, kind of what their goals are for their life, and for the people around them. Sometimes people are very much talking about grandkids and things that they want to see when the grandkids get older. Sometimes it’s that the person themselves is young and really wants to live to have their grandkids.

And so I think that this kind of breadth of people who can come in with leukemia means that I just need to know more about the person even before talking about the disease that they’re there to see me for. When we get into the leukemia itself, it’s really contextualizing a lot of the information that we find out about their leukemia with what I just said with the person themself and what their values are.

And this can take the form of many different things because in leukemia, we have treatments that are more intense, that are less intense. We have options like bone marrow transplant for some patients when it’s necessary. And a lot of those things are balances between risks that people might need to accept in terms of the side effects from treatments and the benefits that those treatments will give them in terms of our expectation of putting leukemia into a remission or ideally curing them long-term of their disease.

And so the patients and families are essential in that process, because they’re the ones who in the end are going to make the decision about, “Do I want this therapy or not? Do I want to move forward with something that’s going to make me have to be in the hospital for several weeks or longer, potentially, or try something outpatient if those options are available to me and kind of where I want to spend my time?” And so in that, it’s really just an ongoing conversation. It can take so many forms that we just want to know the specifics of what the risks and benefits are and what those risks and benefits actually mean for that person in front of me.

Lisa Hatfield:

Okay. Thank you. And do you have an activation tip for patients, their families maybe about when they come in to visit you for an office visit regarding those decisions?

Dr. Andrew Hantel:

So my activation tip would be for when your doctor’s talking to you about the risks and benefits of a treatment, it’s very easy for us to talk about risks and benefits in medical terms in terms of percentages of this and percentages of that. And you know I think it would be better if you ask and ask them to talk to you about what does this mean in terms of maybe getting towards a milestone that you want to be around for and also we’ll be able to go to in terms of how healthy you are, side effects you might have, need to be in the hospital, all those different kind of things that I think are easy to get lost when we see somebody either in a hospital bed or in a clinic room that’s kind of spaced away from where they are and where they live all of their life. And so I would just say bring in and ask for kinds of risks and benefits and decisions that are around who you are as a person even in addition to kind of the medical facts and their ability to tell you that.

Lisa Hatfield:

Great. Thank you. I love that tip personally, I’m going to use that when I see my oncologist in two weeks to have a milestone to work toward maybe, or based around. So thank you for that tip.

Share Your Feedback About [ACT]IVATED AML

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors from Patient Empowerment Network on Vimeo.

How do socioeconomic status and other factors impact novel acute myeloid leukemia (AML) therapy use? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School  discusses major factors that impact novel AML therapy use, solutions to decrease the disparities in novel therapy use, and support resources for patients.

[ACT]IVATION TIP

“…for patients who are newly diagnosed and considering different treatment options that may be available to them to say working with both your clinical team and looking outside the clinical team to other well-known support services like Leukemia & Lymphoma Society to see if there are additional financial and other resources that can be obtained in order for you to be able to avail yourself of any treatment option that’s available, would be very helpful.”

Download Resource Guide | Descargar guía de recursos

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How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

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Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

Why Is Shared Decision-Making Important for AML Patients?

Why Is Shared Decision-Making Important for AML Patients?

Transcript: 

Lisa Hatfield:

Dr. Hantel, in your study focusing on sociodemographic associations with uptake of novel therapies for AML, can you describe those findings and what they might mean for patients from diverse backgrounds, particularly those with lower socioeconomic status?

Dr. Andrew Hantel:

So in our study of sociodemographic associations with the uptake of novel therapies for AML, we found that patients from diverse backgrounds, particularly those with lower socioeconomic status and those who identified as Black, Asian, or other in this case, non-Hispanic minoritized groups actually face disparities in accessing some of the new treatments that we have for AML. And we know that there are a number of new treatments for this disease, but that many of these treatments are more expensive and are given as outpatients.

And in these cases, this can be great, because it allows people to not have to remain in the hospital like some of our old therapies, but also means that really this is putting more of the like logistical burden on families and on patients. Meaning you have somebody who’s potentially more sick at home rather than in the hospital where there’s nursing and a lot of other caregivers that isn’t on the caregiver at home.

And then we also have the increased burden of actually bringing the person back and forth to the hospital, taking more time off work, and all of the money also that’s involved in that. And so this can translate into some disparities by socioeconomic status, which means that people with less means are less likely to get these medications. And these same groups are also less likely to be seen in practices where these newer drugs are likely to get prescribed.

And so together, some of the study findings that we saw were more that these drugs were being less taken up by people with those backgrounds and by practices that see those patients. And in the end, we know that these novel therapies are being approved, because they offer something new, either that’s better or that expands the treatments to newer groups who are unlikely to have as great options before.

And so we want to really provide these treatments to everybody who’s eligible for them. And we shouldn’t think that that eligibility requires really different amounts of money, or different types of personal characteristics could be equitably available to everybody.

And addressing these disparities kind of involves a very complex set of considerations, such as making sure that patients who are stable enough to do so they can go see AML specialists and consider more of these novel therapies that all patients are educated about, their treatment options and the logistics of different treatment choices and that they’re provided with all the avenues of support available to them.

Some of these can be through societies like The Leukemia & Lymphoma Society, which can connect patients with a variety of support services, including more informational services as well as direct financial support to be able to either obtain these drugs or work with companies and other places to figure out how to maintain or how to obtain these drugs.

So my activation tip for this question would be for patients who are newly diagnosed and considering different treatment options that may be available to them to say working with both your clinical team and looking outside the clinical team to other well-known support services like Leukemia & Lymphoma Society to see if there are additional financial and other resources that can be obtained in order for you to be able to avail yourself of any treatment option that’s available, would be very helpful.

Share Your Feedback About [ACT]IVATED AML

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway? from Patient Empowerment Network on Vimeo.

What steps are being taken to help underrepresented acute myeloid leukemia (AML) clinical trial groups? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses an important approach that is being utilized to dismantle AML clinical trial barriers for underrepresented groups and proactive patient advice to work toward clinical trial engagement for all patient groups.

[ACT]IVATION TIP

“…patients of really any group to say kind of to their physicians, ‘How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody?’”

Download Resource Guide | Descargar guía de recursos

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What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Transcript: 

Lisa Hatfield:

Dr. Hantel, for patients who belong to a racial or ethnic group that are underrepresented in clinical trials, what steps are being taken to address this issue among you and your colleagues?

Dr. Andrew Hantel:

That’s a great question. So there are a number of efforts being made in our community to increase diversity in AML clinical trial enrollment, and I really think we are taking on what’s called a multi-level approach, meaning that we need to target things at different levels, the level of the patient, the level of the doctor and the research team, the level of how trials are designed to the level of the hospital,  level of the community, and then the level of the government or the regulatory people, and just working on one of those levels is really going to fix things and so we are starting to kind of chip away at the problems that exist at each of those levels, that are really stopping underrepresented groups from being represented in clinical trials.

A few examples of these are things like community engaged trial development, where we are linking clinical trial investigators to community members to collectively design trials that really lower some barriers to entry, like eligibility criteria, and then to look at where they’re actually planning on opening up their trials to make sure that they are in communities who have been historically underrepresented, we’ve also set up some monitoring systems since…You may be surprised where they actually haven’t been good systems for telling hospitals, telling researchers, telling doctors, who am I enrolling versus who am I actually seeing as a patient and who’s being seen at our hospital versus who lives in the community that the hospital serves. 

Really without that basic information, doctors and researchers can’t really have an idea in any real-time sense of how well or how poorly they’re doing at enrolling equitably. And we’re trying to do the best for our patients. And a lot of this is kind of inadvertent exclusion, but I think unless you present those data to people, they are likely going to assume it’s going well or that the problem kind of exists elsewhere, and they can’t do any better. And so I think linking that down to the program and the hospital actually gives them buy-in as to, “Oh, this is something that I’m doing, this is by a responsibility.”

There are also programs that we’re working on to train culturally diverse research staff and physicians, since a lot of research teams don’t look too much like their patient communities. And finally, we are creating educational programs with patient advocates and community organizations to educate patients about AML and about trials to make sure that they’re well-informed, have a place to go for answers, and all of this together really leads to lowering barriers, expanding access and making the system more inclusive and reflective of the community.

So my activation tip for this would be for patients of really any group to say kind of to their physicians, “How are people like me being engaged in research, and is there anything that I can do to help the groups that I identify with be more engaged in the research that is taking place, so we can really move the field forward and make sure that cures are happening for everybody.

Share Your Feedback About [ACT]IVATED AML

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation? from Patient Empowerment Network on Vimeo.

For acute myeloid leukemia (AML) clinical trial participation, what makes post-access enrollment essential? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses factors that play into post-access enrollment and patient advice to help decide about clinical trial participation.

[ACT]IVATION TIP

“…when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient…by looking at it as, who am I as a person, and does this fit with me and sit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.”

Download Resource Guide | Descargar guía de recursos

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What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

Dr. Hantel, what does post-access enrollment mean, and why is it important in understanding disparities in AML clinical trial participation?

Dr. Andrew Hantel:

Sure, so we have a lot of steps between somebody getting diagnosed with AML and somebody enrolling on a clinical trial, and the first step is actually being at a site where clinical trials are offered. And in a lot of cancers, that is kind of the major barrier to getting on trials and that a lot of people are taken care of at clinics or in hospitals where there just aren’t clinical trials available for their cancer at all. And so after that, we kind of have this idea of a lot of other steps that are needed, even when the person is at a site with clinical trials.

And that’s kind of that whole idea of what post-access enrollment refers to,  that in a very granular way, means and at a site that has clinical trials, does that site now have clinical trials that are right for my specific type of AML, and then after that, am I actually eligible for that particular trial, and after that, do I want to participate, and after that, is it feasible for me to participate?

Because there are a number of other factors that come into a clinical trial, like maybe extra visits, maybe extra tests, a lot of other things that come into trial participation beyond just what the actual trial is studying, and so all of those things together mean post-access enrollment, and there are concerns for acute leukemia with respect to post-access enrollment, because it seems like those kind of bevy of steps are where patients who are historically underserved and from minoritized backgrounds are being excluded more from clinical trials or at least not allowed to participate as much, and we don’t know yet if there is one particular step, but it seems like from all the evidence that we have, that it’s kind of a combination of slightly more difficult steps at each point in that process that make it so in the end, those groups are less likely to enroll and less likely to participate. 

In the past, there was a lot of, I would say almost blame put on some of those groups because it was thought that they were more distrustful of the medical establishment, and I think for right reasons, at least in the past, the medical establishment has done horrible things to minoritized groups in this country. But we’ve recognized that it’s more a lot of structurally racist barriers that are put up in front of those people, and that the good evidence now is that people, no matter their background, really want to participate in clinical trials to the same degree.

And that it’s more kind of the structure is that we, the walls that we put up in front of them, or other things that are stopping them from enrolling, could be insurance, it could be access, it could be eligibility criteria, it could be kind of all of those other burdens that are required, like having a caregiver and everything else, but together, everything after access seems to be just as important for getting people onto a clinical trials in AML, whereas that’s not as much the case in some other diseases.

Lisa Hatfield:

Okay, thank you. And do you have an activation tip for that question, Dr. Hantel?

Dr. Andrew Hantel:

My activation tip for this question would be, when you’re asking about clinical trials, really ask not only what the trial is about, which is very important in deciding if whether or not it’s appropriate for you, but ask everything about the logistics and ask everything about what it would mean for you as a patient. There are some trials that are doing wonderfully about this and really trying to make sure that people are able to continue to live their lives while enrolling and participating in clinical trials.

And so I think by looking at it as, who am I as a person, and does this fit with me and fit with also how I want to give back to other people who have leukemia. That’s kind of one way that we help people think about whether or not they want to participate.

Lisa Hatfield:

Okay, thank you. And everything you talked about, it sounds like clinical trials are so complicated. If patients can have an advocate with them most of the time when they’re going to these appointments, it might be super helpful too, to take somebody with you. There’s a lot of information being throughout it patients, especially when it comes to clinical trial information, so thank you.

Dr. Andrew Hantel:

I completely agree.

Share Your Feedback About [ACT]IVATED AML

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face? from Patient Empowerment Network on Vimeo.

Do minority and ethnic groups face acute myeloid leukemia (AML) clinical trial inequities? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses research study results of NCI-designated cancer centers of AML versus other cancers and proactive patient advice for clinical trial access.

[ACT]IVATION TIP

“…patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, ‘Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?’”

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Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

Dr. Hantel, what primary findings are in your study regarding inequities and clinical trial participation among minoritized race and ethnic groups with cancer at the comprehensive cancer centers?

Dr. Andrew Hantel:

So we performed a couple of different studies on this, I think together, they’ve collectively found that there are significant disparities in clinical trial participation among minoritized racial and ethnic groups at comprehensive cancer centers. And just to take a step back and say, what are comprehensive cancer centers? They’re basically a designated center, and the designation is provided by the National Cancer Institute (NCI), and that basically says that this place is of such and such a level of quality in terms of their delivery of cancer care and their research that they perform, and so these are generally larger academic centers that have a lot of clinical trials, have a lot of experts across different cancer types, including AML. And those are the ones that we are wondering if people had equal or equitable access to, in other cancers compared to AML.

A lot of the disparities in clinical trial participation is really because these different minoritized groups have less access to these comprehensive cancer centers, so they could really never be considered for trials, because they’re just not seen at places where the trials are taking place. This is the case for a lot of common solid tumors, such as breast and colon cancer, where very, very large proportions of patients are seen in the community.

And this means that in leukemia, however, we found that participation disparities were not only due to access, but because the leukemia is less common because a lot of docs actually almost preemptively refer some of their patients to get seen, some of the disparity is kind of shifted, and it ends up becoming not as much an issue just of access but also of getting into the trial after they’re seen at the center.

And this can be because of a variety of things, there are reasons that we can go into in a second, but we kind of also want to make the statement in the context of it not being a one-size-fits-all answer. There are some cases where comprehensive cancer centers actually both allow great access and allow equitable enrollment on their trials, and there are other comprehensive cancer centers that have had…and continued to have issues with this. 

So I also just want to make sure to make that distinction. But after somebody gets down to a center, you have the process of, is there a trial at the center that’s actually right for your specific type of leukemia and the stage of the disease, and if you’re up front or relapsed or all of these other nuances, and then you have the questions of, are you eligible, are you offered that trial, and then are you interested in partaking in that trial, and is it feasible for you to participate?

So there are all these other steps after that point of access, and in general, what we saw was that it was kind of these later steps that were as much more of an issue for equitable enrollment for leukemia as that first step of access. And so it’s slightly different from what we’ve seen in other cancers, and so the answers and the solutions for that are going to be different.

So my activation tip for this question would be for patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, “Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?” That might be something where it does take you to that site to actually get evaluated and see if there is anything available, but that would be the first step.

Share Your Feedback About [ACT]IVATED AML

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions? from Patient Empowerment Network on Vimeo.

What are key barriers and solutions to acute myeloid leukemia (AML) care? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses factors that create AML care barriers, solutions to overcome barriers, and proactive patient advice to help ensure optimal care.

[ACT]IVATION TIP

“…patients and their families to be aware of where any specialized care facilities are near them, it might not be even so much geographically near as like within the same 10 miles, but it might be like, ‘What’s the nearest large facility that maybe is known for having clinical trials or other medical research?’ And just to reach out to them and ask, ‘Do you have telehealth consultations? What would it mean for me to come to you?’…and then talk to the actual physician who’s caring for them and say, ‘Is it safe for me to wait to talk to them, is it something where I do therapy now, and I should maybe go talk to them after I’ve received my initial therapy and have that discussion?’”

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What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

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Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

Dr. Hantel, what are some of the key barriers that patients with AML encounter when accessing timely and effective care, and how can healthcare systems work to address these challenges?

Dr. Andrew Hantel:

That’s a great question. People with AML face significant barriers in accessing care, primarily due to the complexity and intensity of the treatment options that we have available. The landscape of those treatment options is really much different than it was even 10 years ago. We’ve had more than 10 novel drug approvals and extensions of treatments that are effective into groups such as older adults who have really previously had few good options and now have potentially many, and this has led to differences in what some of us call diffusion of innovation or how treatments are taken up and used by the medical community.

We kind of have some people who are usually at academic centers and are early adopters because they’ve seen some of these newer drugs and participate in the global trials, and then we have other community docs who see a lot of people with a variety of different cancers and kind of keep up with the literature, but to some extent aren’t as familiar with those new drugs and take some time before they start to incorporate them into practice.

And it is really important because in AML is not a disease that’s so common, so every oncologist sees patients with AML very frequently, and that kind of creates a difference between patients, people who are specialists, who are at the larger academic centers and people who are on the community and their need to really work together.

And this is a big point because treatments generally need to occur within a few weeks of diagnosis, if not much sooner, and therefore, all together this idea of new treatments kind of expanding out into the universe and also having the need for quick treatment means that geography really plays a crucial role in acting as a barrier to some patients getting what we think of as optimal care, especially for patients who live in rural or underserved areas that might not have access to these larger medical centers with specialized physicians, and then we also have financial challenges for those same patients and that getting into places is a major barrier, insurance to get to those places may have additional burdens that are placed in people with high costs that are associated with some of these treatments and healthcare systems have begun to address some of these challenges.

By really trying to enhance some local capacities such as through telemedicine consultations, kind of working in what we consider like a hub and spoke system where they have local providers reaching out to them and patients coming to them, at the time point of treatment decisions and then going back locally for a lot of their care, just so it’s not as burdensome in terms of travel, and then there’s also a lot of programs that are both within medical systems and outside of medical systems that are being helpful for patients, for financial guidance and assistance, such as through Leukemia & Lymphoma Society, which has wonderful programs, as well as kind of identifying partners for travel and housing grants and stipends that might be needed for caregivers, a lot of.

As I said, in a lot of centers like ours who are really trying to use any means possible to overcome these barriers for different patient groups, and a lot of it really depends on exactly what the person’s situation is, because so much of leukemia care is about the values of the patient and really how we’re targeting treatment, not only toward their disease, but really aligns with their goals, and so overcoming barriers is a really personal thing based on the values and the goals of the person who is in front of you.

Lisa Hatfield:

Great, thank you. And then one follow-up question I did have to that, as you mentioned that some patients are seen by their community oncologist, is it possible for a patient who is diagnosed with AML to do maybe one consult via telemedicine with a specialist in AML and maybe coordinate care that way, or do specialists typically like to have those patients present for regular visits?

Dr. Andrew Hantel:

Yeah, so I think the landscape of this is shifting in the past, I think no matter what, we have the idea that patients need to be safe, especially in the early days of their diagnosis, so it might be the case that somebody’s leukemia is diagnosed and they need treatment, it started immediately, and it’s not safe for them to wait, and it’s not safe for them to travel. But definitely there are other people who see their doctor and their blood counts are relatively stable, and the doctor thinks that it’s reasonable for them to get a second opinion, and these days, those opinions are happening yet still in person, sometimes centers like to see people in person.

But other times, as we said, those travel and distance and burdens can be so much that patients and these centers are turning to telehealth and other virtual forms of care that can at least provide a preliminary consultation and say, if you were to be seen here, we may have additional options like clinical trials or from what I’ve seen, I agree with what your physician is offering you and those more higher level decisions. And so it’s not so much whether or not even telehealth versus nothing, it’s kind of telehealth in person versus the need to get care immediately.

Lisa Hatfield:

Okay, that’s super helpful, thank you. And do you have an activation tip for this question, Dr. Hantel?

Dr. Andrew Hantel:

Yeah, I think the first thing is essentially just for patients and their families to be aware of where any specialized care facilities are near them, it might not be even so much geographically near as like within the same 10 miles, but it might be like, “What’s the nearest large facility that maybe is known for having clinical trials or other medical research?” And just to reach out to them and ask, “Do you have telehealth consultations? What would it mean for me to come to you?”

Those kinds of things, and then talk to the actual physician who’s caring for them and say, “Is it safe for me to wait to talk to them, is it something where I do therapy now, and I should maybe go talk to them after I’ve received my initial therapy and have that discussion?” And I think that leads into my kind of second or ancillary tip is to really don’t be afraid to ask your care teams about both of those things, and then about the logistics of what any of your care is going to mean in terms of the burdens of getting back and forth to clinic, having to be in the hospital and both for you as a patient as well as for your family.

Share Your Feedback About [ACT]IVATED AML

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations from Patient Empowerment Network on Vimeo.

What AML research efforts are underway to advance equity among Black and Latinx and populations? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses initiatives that are working to improve AML care disparities. 

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How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

Dr. Taveras, in your research, you examine racial and socio-economic disparities in AML outcomes. Can you speak to what research efforts are underway to further understand and address these disparities in AML diagnosis treatment and outcomes among the Black and Latin populations?

Dr. Sara Taveras Alam:

So one of the things that we have noticed is that there is an underrepresentation of minorities in clinical trials for AML, and there is an intentional poll currently to try to make these trials available to these communities. One barrier maybe if patients are not able to access clinical trials, because of the institution they’re in, so we definitely encourage patients to ask if their institutions offered clinical trials. The other thing is that we are trying to make clinical trials available in other hospitals, not just the big name academic institutions.

So there is an effort to replicate trials or expand trials to institutions where these populations may be frequenting more so than the large big name academic groups. A lot of factors contribute into the disparities, but a lot of our research efforts up until now have been focused on identifying that there is a disparity and why the disparity is there. We’re just now starting to try to figure out how to expand the access so that our minorities are included in these clinical trials and hopefully address the disparities.

Share Your Feedback About [ACT]IVATED AML

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

Do AML Patients Receive Allo or Auto Stem Cell Transplant? from Patient Empowerment Network on Vimeo.

What type of stem cell transplant do AML patients receive? Expert Dr. Sara Taveras Alam from UTHealth Houston explains stem cell transplant for AML care and advice to help patients locate a bone marrow donor match.

[ACT]IVATION Tip

“…encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low. We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend.”

Download Resource Guide | Descargar guía de recursos

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How Can AML Patients Benefit From Shared Decision-Making?

How Can AML Patients Benefit From Shared Decision-Making?

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

When you mention a stem cell transplant, are those allogeneic stem cell transplants where they receive a donor’s stem cells, or are they the autologous where you take some of their stem cells at a certain point and then give them back to the patient?

Dr. Sara Taveras Alam:

So for patients with acute leukemia who require a stem cell transplant, it is an allogeneic stem cell transplant, so it does have to be a transplant from a matched donor, and the first pool of possible donors tend to be the patient’s siblings. If they have brothers or sisters from the same mom and dad, those are the possible first-line donors and are tested to see if they’re a match to the patient, and second to that, then the transplant institutions look into a donor registry.

So my activation tip for that question is to encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low.

We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend. However, we could always pay it forward, and if we encourage our friends and family to enlist on these registries, it is very beneficial for our population.

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How Can AML Patients Benefit From Shared Decision-Making?

How Can AML Patients Benefit From Shared Decision-Making? from Patient Empowerment Network on Vimeo.

How can shared decision-making benefit AML patient care? Expert Dr. Sara Taveras Alam from UTHealth Houston explains how she works to set patient expectations from diagnosis and throughout the treatment journey and patient factors that play into decision-making.

[ACT]IVATION Tip

“…patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, how do you involve your patients and families in the shared decision-making process, both at initial diagnosis and then going forward?

Dr. Sara Taveras Alam:

From the initial diagnosis, I do try my best to explain what the life of an AML patient looks like. This can be very overwhelming and we tend to need to repeat ourselves throughout the patient-doctor relationship, most of our patients unfortunately, require a one-month-long admission initially at diagnosis, most of our patients receive diagnosis and remain in the hospital while they get their first treatment and recover from that. And that’s a very big journey to go through, and we want to make sure that the patients themselves are well-informed and their family and caregivers are well-informed of what this will mean for them as well.

Many of my patients may have children or parents or spouses that they themselves are the caregivers for and then they need to make arrangements for that while they’re going through their health process. So I believe that the decision to receive treatment is not a decision that doctors make for the patients. It’s a decision that should be made by the patient, and although most people will choose to receive treatment offers for acute myeloid leukemia, I will have some patients that may have been older and may have gone through other health issues and do not want to spend the rest of their lives in this process and that is their choice to make.

So I really do try from the very beginning to make sure I set an expectation of what life will look like with acute myeloid leukemia, and what that looks like initially is about a one month long hospitalization with chemotherapy, a lot of transfusions, monitoring for infections, and after that time period, it will have a lot of clinic visits, sometimes twice a week, and possibly re-hospitalizations for treatment depending on the treatment decided upon. We have more intensive chemotherapies or aggressive chemotherapies and lower intensity chemotherapies, that’s also a shared decision. 

There may be patients who are appropriate for intensive chemotherapy in terms of their fitness or age, but may be afraid of the side effects that that could entail, and it may be appropriate for them to go with a low intensity, and that’s an option for them. So I think that ultimately, my activation tip for the question is that patients know that they are the decision makers. The doctors are there to guide the patients to inform the patient. Definitely, there will be treatments that would not be recommended for a physician and they would not give, but generally, there’s more than one possible right answer, and the patient should be empowered to decide what fits best for their lifestyle and what accommodations need to be made.

One example is, we’ve had a patient whose daughter had a sweet 16 and her re-admission was scheduled during that time, but it was really important for that patient to be with her daughter on her birthday, and we just pushed on the admission. If the patients bring up what their concerns are, we’ll do our best to accommodate as long as it’s not a risk to them.

Lisa Hatfield:

Great, thank you. And for all the patients listening, it’s nice to know that we can ask our providers if we have a special event, can this be changed, is there any chance of altering the timeline just a little bit. So thanks for that tip. We appreciate that.

Dr. Sara Taveras Alam:

You’re welcome.

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AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups from Patient Empowerment Network on Vimeo.

What factors contribute to AML diagnosis disparities? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses disparity factors in underrepresented patient groups and patient advice for newly diagnosed AML patients.

[ACT]IVATION Tip

“…I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient. And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the stage of AML at diagnosis between underrepresented compared to other racial and ethnic groups, and if so, what factors contribute to these disparities?

Dr. Sara Taveras Alam:

So when we think of cancer stages, we usually refer to stage I through stage IV. Stage I being the cancer is localized to where it started, for example, breast, lung cancer, just in that breast, just in that lung, small and as things spread farther and farther from where they started, then you have stage II, stage III, stage IV, so for AML, it is a blood cancer, so technically, it’s all through our body, since our blood goes through the body.

There may be patients that present with no complications from their AML, and we’re assuming that they present it properly from when their diagnosis, from when their disease started. And other patients that may present with some complications from their acute myeloid leukemia already, so there the assumption is that acute myeloid leukemia has been ongoing for some time, but it is really hard to really determine when the acute myeloid leukemia started unless the patient had been undergoing very frequent blood work previously.

We do know that patients who are Black tend to present with AML at a younger age, and we’re not sure what factors contribute to that. We also know that they may be at higher risk of complications during treatment as our Hispanic patients.

We also know that their diseases may be more resistant to treatment and associated to mutations that are more aggressive. So those are the factors that contribute. 

A lot goes into the treatment responses for our patients, and we want to achieve a remission and maintain a remission, and these patients require frequent healthcare visits and they may have barriers to that, depending on their work, childcare, transportation, there may be many barriers for these underrepresented patients that they themselves don’t feel as though the healthcare team needs to know about, but it is very important for us to know about these barriers so that we can do our best to address them and the patient can receive the care that will ultimately give them the best chances of survival and response to treatment.

Lisa Hatfield:

Dr. Taveras, do you have any general tips for patients who receive a diagnosis of AML?

Dr. Sara Taveras Alam:

Yeah, so for any patient with a new diagnosis of cancer and especially acute myeloid leukemia, I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient.

And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume. They should ask when they don’t know what the plan is or when they want to make sure that things are going in the right track.

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How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups? from Patient Empowerment Network on Vimeo.

How do AML genetic and molecular subtypes vary by population groups, and what are the  impacts? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses AML characteristics that impact some population groups and patient advice for overcoming barriers to AML care.

[ACT]IVATION Tip

“…communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too…”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the genetic and molecular subtypes of AML among different population groups, and how do these differences influence disease progression, response to treatment, and survival outcomes?

Dr. Sara Taveras Alam:

That is a great question. We know that in acute myeloid leukemia in general, the molecular characteristics and genetic characteristics are of prognostic and therapeutic value. We do know that Black patients have a higher risk of poor risk cytogenetics and a higher risk of not responding to treatment as well as a higher risk of complications from treatment. Some of my work actually also evaluated that Hispanic patients with comorbidities fared much worse than other populations with comorbidities.

So we always have to think about the patient as a whole and provide care that target the leukemia, but also take into consideration all of the characteristics of our patients that we’re serving. Some of our patients may have a higher difficulty accessing care or continuing care, obtaining their medication, and that too may impact their treatment outcomes.

My activation tip for this question would be to communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too, so there are a lot of barriers to care that come from the patient socioeconomic circumstances, which is not necessarily specific to race or ethnicity, but may be associated since we know that some of our minorities will live in places where they’re below the poverty index, and if we don’t help them with these things, they might not have the best outcome. 

Lisa Hatfield:

If you have a patient who does have some kind of barrier to access, whether it’s to their medications or to getting to treatment transportation, can they talk with you or the nurse, or is there a social worker at most facilities? Who would they mention that too, if they had an issue with access?

Dr. Sara Taveras Alam:

I think that the best thing is to mention it to everyone that you encounter in the healthcare system, definitely in terms the sense the social worker may take charge, connecting the patient with resources that are available. In my institution, we have a navigator that also helps connect patients to resources, but also as a provider, I’ve been in the position of sharing names and contacts of certain institutions that may be able to help the patient, I’m not sure if it’s appropriate to tell the name here, but there definitely may be things available for the patient that different members of the team may be knowledgeable about, so my recommendation would be to mention whatever barrier you have to each person that is connecting with you from your healthcare team, social worker, medical assistant, nurse, doctor. The more people you mention it to, the higher the likelihood, that it will be taken care of.

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Black and Latinx AML Patients | The Impact of Cultural Beliefs

Black and Latinx AML Patients | The Impact of Cultural Beliefs from Patient Empowerment Network on Vimeo.

What impact can cultural beliefs have for Black, Latinx, and other AML patients? Expert Dr. Sara Taveras Alam from UTHealth Houston explains how experiences, cultural beliefs, and religious beliefs can impact AML care and patient advice to help inform your care provider about your viewpoint.

[ACT]IVATION Tip

“…voice your beliefs, so that your providers are aware of your goals and the barriers to care possibly and inform you better on how we can accommodate for your beliefs and improve upon the expectation that you may have from the healthcare system from previous experiences.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, what impact do cultural beliefs and practices surrounding illness and treatment-seeking behaviors have on delays in AML diagnosis and disparities and treatment adherence within the Black and Latinx communities?

Dr. Sara Taveras Alam:

Thanks for this question. The experience that the patients may have had previously with the medical system, or that their family members or friends may have had previously with the medical system may impact their initial care. It may be initially that patients, of course, don’t know that this is what’s going on, and they think that they have some flu or viral infection, or does not know the severity of the situation, and especially if the personal or family experience with health care has not been positive, this may cause delays in presenting to tuition and obtaining a diagnosis. Unfortunately, we know that Black patients tend to be diagnosed with AML at an earlier age, and we know that they might not respond to treatment as well as their non-Hispanic white counterparts.

So it’s important to know this because young patients may not really foresee that they may be ill in this way and not seek care promptly. So with AML, the time to care is not necessarily going to cost progression of disease, but the patient may have complications from their disease by the time that we make the diagnosis and that can make things a little bit more challenging. Unfortunately also, Black and Latin communities can face higher complication rates from treatment, and that is something that we have seen in several clinical trials.

In the specific situation of Latin communities and well not only Latin communities, but other patients with strong religious beliefs and for Jehovah’s Witnesses specifically, this is a very challenging disease because patients who are Jehovah’s Witnesses do not accept transfusions and unfortunately we know that if the patients with acute myeloid leukemia are unable to be treated appropriately without transfusion. They may need transfusions because of their illness, and we know that with chemotherapy, unfortunately, the hemoglobin could get worse before they get better.

So it’s almost a guarantee that even if a patient with AML does not need a diagnosis, does not need a transfusion at presentation, it’s almost guaranteed that they will need a transfusion at some point during the course of their treatment. So this makes it very challenging for patients who have that religious belief and may require involving their religious leader and can cause a lot of conflict within their family members, unfortunately.

My activation tip for this question is to voice your beliefs, so that your providers are aware of your goals and the barriers to care possibly and inform you better on how we can accommodate for your beliefs and improve upon the expectation that you may have from the healthcare system from previous experiences.

Share Your Feedback About [ACT]IVATED AML

How Can Bone Marrow Biopsies Be Used in AML Care?

How Can Bone Marrow Biopsies Be Used in AML Care? from Patient Empowerment Network on Vimeo.

How do AML care providers use bone marrow biopsies in patient care? Expert Dr. Sara Taveras Alam from UTHealth Houston explains how the tests are used and shares patient advice for lifestyle and dietary precautions against infections.

[ACT]IVATION Tip

“…in terms of going out in the world, I would avoid for our AML patients to be in crowded spaces, and if they are going to be in crowded spaces to use a mask so that they’re protected from respiratory infection.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, can a bone marrow biopsy be used to monitor response to treatment in AML, and are there other tests to help monitor treatment and kind of a unique question, are there any specific dietary or lifestyle recommendations for patients undergoing a bone marrow biopsy or diagnosed with AML?

Dr. Sara Taveras Alam:

Well, the response to treatment in AML is measured with a bone marrow biopsy as the best test to assess response; however, we can have a clue into the response based on the blood test for the patient, so typically patients with acute myeloid leukemia will have anemia and thrombocytopenia, so low hemoglobin, low platelets and will likely be needing transfusions for this. 

Sometimes patients with acute myeloid leukemia will have an elevated white blood cell count or low white blood cell count. Ideally, if a patient has responded to treatment, we would see the hemoglobin and platelets improving and less transfusion requirements. They might not normalize that, they would usually improve if there is response to treatment, and similarly, when it comes to the white blood cells, if the patient has responded to treatment, ideally the white blood cell count should normalize and you should not be seeing any abnormal immature blood cells in the blood work, so we should not be seeing any blasts and ideally we would be having…I’m sorry, a good number of healthy white blood cells.

So that is a surrogate marker for the bone marrow biopsy to assess response, how is the patient doing? What symptoms are they having? What is their CBC or blood count looking like? Ultimately, the bone marrow biopsy is the best test, because then we look at the place where the blood cells are being born and confirm that the blast count has been eradicated, that we see no blasts or at least less than 5 percent, which would be what we call a morphologic remission, then we do deeper assessments by sending the tests about the karyotype or chromosomes that are driving the disease and the mutations that could be driving the disease.

Ideally, if the patient has a very good response, all of those should be gone, sometimes the mutations are still there, but we’re not seeing the deceased being active, and really the bone marrow biopsy will guide the treatment to see if we’re in the right trajectory, if we can continue whatever treatment the patient is on or if we need to switch gears and treat with a different regimen to get the disease back in control.

As it relates to specific dietary or lifestyle recommendations for patients undergoing bone marrow biopsies, I wouldn’t say that there are any specific recommendations for that. On occasion, if a patient is on a blood thinner, they may be asked to stop the blood thinner for the bone marrow biopsy. Of course, that depends on what the indication for the blood thinner is. But in terms of dietary lifestyle changes, I don’t think that any change is necessary.

In terms of patients overall going through acute myeloid leukemia in terms of lifestyle recommendations, it is recommended that the patient be extra careful with infections because they are at higher risk for infection and this may mean different things at different stages of treatment and may be guided by what blood counts are looking like, specifically the neutrophils, which are the healthy white blood cells that help protect us from infections.

So patients that are neutropenic, meaning have low neutrophil count are at really high risk of infections, and we recommend for them to avoid undercooked meat or raw seafood, for example, ceviche or sushi. Any meat should be well cooked and any vegetables have to be very clean, very washed, so that we eliminate the risk of infection.

Oftentimes, I tell my patients to stick to cooked vegetables rather than raw because, unfortunately, if there is some bacteria, then the risk for our patients is much higher than the general population. Additionally, in terms of going out in the world, I would avoid for our AML patients to be in crowded spaces, and if they are going to be in crowded spaces to use a mask so that they’re protected from respiratory infection.

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AML Clinical Trial Participation Disparities | Impact on Access, Outcomes, and Inclusion Strategies

AML Clinical Trial Participation Disparities | Impact on Access, Outcomes, and Inclusion Strategies from Patient Empowerment Network on Vimeo.

What are AML clinical trial disparities, outcomes, and solutions for inclusion? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses patient factors that impact access, underrepresented patient groups, and patient advice for improving clinical trial access. 

[ACT]IVATION Tip

“…inquire if there are clinical trials available at the institution where you’re being cared for, not all institutions do have clinical trials available, and that is okay, but you should be informed and given the opportunity to look into other facilities if clinical trials are available and have the ability to do so.”

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Transcript: 

Lisa Hatfield:

Dr. Taveras, so this is kind of a three-part question regarding disparities in acute myeloid leukemia. So what are the disparities in clinical trial participation among AML patients, and how do these disparities affect access to innovative treatments and outcomes, and then kind of a third part to this question, how can efforts be made to increase diversity and inclusion and clinical trials for AML? 

Dr. Sara Taveras Alam:

Thank you. This is a very important question. Unfortunately, disparities exist in the outcome of AML patients based on different factors, social-economic factors, racial factors, ethnicity, and unfortunately, it has been proven that in clinical trials, the non-Hispanic white population is the predominant population study, so unfortunately, our African Americans or Black patients and our Hispanic patients are underrepresented, and this may impact whether or not the treatments that are getting put, being studied and being utilized in AML patients are appropriate for these patients who were not included on the clinical trials.

I do see that there is an intentional effort to recruit patients from minority groups in institutions where trials are available; however, one caveat is that unfortunately, some of those underrepresented populations don’t necessarily have access to the institutions that are leading the clinical trials. I’m in Houston, and we actually have a county system here in Houston, where leukemia trials are available, and that is really a blessing, because it’s not something that is very common. So throughout my training, when I did go to a county hospital, I was able to see Hispanic patients and African American patients being given the opportunity to participate in clinical trials that may impact the long-term treatment of other patients and those treatments being studied in the population that was using them.

My activation tip for this question is to inquire if there are clinical trials available at the institution where you’re being cared for, not all institutions do have clinical trials available, and that is okay, but you should be informed and given the opportunity to look into other facilities if clinical trials are available and have the ability to do so.

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