AML Clinical Trials, Access, and Health Disparities Archives

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?

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.

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

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

May 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Access and Affordability, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video AA, AML Video ND, AML Video TC /by Kara Rayburn

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

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Related Resources:

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

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.

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

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

May 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Access and Affordability, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video AA, AML Video ND, AML Video TC /by Kara Rayburn

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

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

Related Resources:

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

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.

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

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

May 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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?’”

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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

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.

Download Resource Guide | Descargar guía de recursos

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

May 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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?’”

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

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.

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

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

March 25, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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.

Download Resource Guide | Descargar guía de recursos

How Can AML Patients Benefit From Shared Decision-Making?

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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.

Download Resource Guide | Descargar guía de recursos

How Do AML Patients and Outcomes Differ by Population Groups?

March 25, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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…”

How Can Bone Marrow Biopsies Be Used in AML Care?

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Black and Latinx AML Patients | The Impact of Cultural Beliefs

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

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.

Download Resource Guide | Descargar guía de recursos

Black and Latinx AML Patients | The Impact of Cultural Beliefs

March 25, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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.”

How Can Bone Marrow Biopsies Be Used in AML Care?

Related Resources:

How Do AML Patients and Outcomes Differ by Population Groups?

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

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.

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

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

March 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

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.”

Download Resource Guide | Descargar guía de recursos

Advancements in AML Treatment | Tailoring Therapies to Individual Patients

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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.

Download Resource Guide | Descargar guía de recursos

AML Diagnosis | Exploring Bone Marrow Biopsy and Alternatives

March 24, 2024/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC, Bone Marrow Biopsies & Predictors of AML Outcomes /by Kara Rayburn

AML Diagnosis | Exploring Bone Marrow Biopsy and Alternatives from Patient Empowerment Network on Vimeo.

What are the purpose and alternatives to bone marrow biopsy? Expert Dr. Sara Taveras Alam from UTHealth Houston explains what’s involved in bone marrow biopsy, what is analyzed, patient advice for the procedure, and alternative testing methods.

[ACT]IVATION Tip

“…ask the providers what to expect from the bone marrow in the facility where you are in. Usually in all facilities, lidocaine, or local anesthesia is used, but if you foresee that in general, you are anxious about procedures or susceptible to pain, you are welcome to request for some medications for pain and anxiety to help you get through that procedure, and generally, once patients have undergone a first bone marrow biopsy, they know what to expect and what accommodations may be needed for them in subsequent bone marrow biopsies.”

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Transcript:

Lisa Hatfield:

Dr. Taveras, what specific features are pathologists looking for in the bone marrow sample when diagnosing AML, and are there any alternative diagnostic methods or tests available for AML besides a bone marrow biopsy?

Dr. Sara Taveras Alam:

And that is a great question. I think that many patients may be scared of what bone marrow biopsy entails. It is a procedure after all, and it can be painful. I do know that they’re able to get some details about the diagnosis from the peripheral blood just from blood tests alone; however, the best diagnosis is performed through the bone marrow biopsy, so it can provide more information about the email, than what we’re able to obtain from the blood, sometimes the blood count, the white blood cell counts are elevated in AML and that may make it easy to do some of our testing from the blood work, but in other patients, the white blood cells may be low at presentation and that can make it very difficult to obtain any meaningful diagnostic and prognostic information without a bone marrow biopsy.

The bone marrow biopsy would also allow to tell if the patient had a preceding blood disorder like a myeloid dysplasia and this may have treatment implications. This is not something that we would be able to tell from the blood alone unfortunately, so when our pathologists look at the bone marrow sample, they are looking at some of the blood that is obtained from that boom marrow space where the blood is produced, and a tiny piece of the bone from there as well, and they’re looking at the amount of cells, especially the normal red cells, the normal white blood cells, normal platelets, and specifically the abnormal white blood cells or blasts that are quantified in a percentage fashion to diagnose the AML.

There are also different types of blasts, so they may be able to sub-classify the AML from just looking at the morphology or how these cells look under the microscope. There are many ancillary tests that are performed on the sample as well to look into the genetics for the driving forces behind the acute myeloid leukemia.

We look at a chromosome analysis to see what the chromosomes are for the leukemia. We look at mutations during FISH testing, and we do molecular testing that are looking at specific point mutations that may be associated with AML and provide insight into the treatment options as well as the prognosis, the patient’s disease, and whether or not they may benefit from a stem cell transplant to increase the chances of maintaining a remission and obtaining a cure.

My advice for patients who may be anxious about the bone marrow biopsy would be to voice their concerns for their providers. I believe that different centers have different practices as it relates to pre-medication, so some places may provide anxiety medications and pain medications in advance of the procedure, but some other facilities may not. So my activation tip for this question is to ask the providers what to expect from the bone marrow in the facility where you are in.

Usually in all facilities, lidocaine, or local anesthesia is used, but if you foresee that in general, you are anxious about procedures or susceptible to pain, you are welcome to request for some medications for pain and anxiety to help you get through that procedure, and generally, once patients have undergone a first bone marrow biopsy, they know what to expect and what accommodations may be needed for them in subsequent bone marrow biopsies.

How Does One’s Culture Impact AML Care?

March 13, 2023/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Activity Guides, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

How Does One’s Culture Impact AML Care? from Patient Empowerment Network on Vimeo.

AML patient and Empowerment Lead, Sasha Tanori, shares how her culture impacted her care and how her diagnosis opened her family’s eyes to start taking care of themselves.

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Transcript:

Sasha Tanori:

My culture made a big significance in my care, because it was something that my family, especially my dad with the Mexican side, it wasn’t something that you did. You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day. So when I started getting the bruises and the tiredness and the fatigue, my dad was just like, “She’s just clumsy, she’s just making it up, or she’s being dramatic,” and it was never a big deal to anybody, especially with him. You know my mom, she’s a little bit more on my side with everything, so she was like, “Oh yeah, you know, maybe you should go to the hospital. Maybe you should go check this out, maybe you should go do that.”

But finally, it was my cousin who convinced me about like a month after all, I was going through all of that to go to the hospital, and still my dad was just like, “Man, she’s going to go to the hospital and be there for 12 hours, and nothing’s going to be wrong.” He was so sure that everything was fine, so finally, when I had went, and I found out I had cancer, I think it really opened my dad’s eyes to realize, “Wow, maybe she wasn’t lying.”

Maybe she wasn’t making it up. But yeah, I think it was a really big step on my part being Mexican American, to finally take that step to take care of myself, especially physically and mentally, you know? God forbid, you have depression or anxiety in a Mexican household, they’re just like, “No, no, no, there’s no…what do you mean you don’t feel good? Just walk outside, drink some coffee, you’ll be fine. Get over it.” So yeah, I think it really opened my dad’s eyes, especially seeing me so sick for him to kind of realize, “Wow, you know, this stuff is kind of serious.” Because now he goes to the doctor, he takes his medication, he takes care of himself more.

But yeah, having that type of cultural background in your household, it’s really hard to express how you’re feeling when it comes to your mental and physical health. It’s hard to walk up to your dad and be like, “Hey, Dad, I’m not feeling good, can you take me to the doctor? Or can we talk about this?” And she’s like, “No, no, no. We don’t talk about stuff. No, we don’t go to the doctor, we don’t do any of that stuff, we have to stay strong and work and take care of the family.” We’re not allowed to be sick, we’re not allowed to take care of ourselves pretty much, I think…

Thankfully, me taking care of myself has kind of helped him as well to take care of himself.

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BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

February 1, 2023/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics from Patient Empowerment Network on Vimeo.

How can acute myeloid leukemia (AML) disparities be addressed in BIPOC groups? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares insight. Learn about disparities, molecular profile cytogenetics, and clinical trial benefits.

[ACT]IVATION TIP from Dr. Daver: “Clinical trials are usually developed to improve and move forward the standard of care to better outcomes, as well as knowing that there are many different approaches to getting financial support through different organizations, entities and even potentially through some of the clinical trials, as well as considering becoming volunteer donors for national marrow donor programs, so you can support potential transplant for patients from those communities, which will give them a potential curative option.”

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Transcript:

Art:

Dr. Daver, non-Hispanic Black and Hispanic patients with AML have higher mortality rates than non-Hispanic white patients despite more favorable genetics and younger age. How can we address disparities in AML among diverse patient populations?

Dr. Naval Daver:

This is a great question, and then something that I think we all need to spend more time with understanding, and now researchers started to look at the differences in molecular profile cytogenetics presentations among different ethnic backgrounds. It is definitely true that access to care has been more limited in some of these populations that you mentioned, including the Hispanic population and in the non-Hispanic Black population, and I think there are a number of things that may be causing this issue, so I think one there is definitely an economic divide, and especially for large academic centers where patients do have to travel, often stay locally for a period of time to go on the trial, this causes expense, and a lot of times,I think a number of these populations may not have had funding or they may not have the insurance that would cover that particular center.

And so this is one of the big hurdles… second, I think that there is among us communities, sometimes more suspicion or circumspect approach to clinical trials and large academic centers thing, that’s something that hopefully we will be able to change with programs such as the and many, many others that we all are working on, because I think we actually do want to have more inclusion in clinical trials. And we do want to have a more representation of the entire population rather than just a subset.

So hopefully the understanding that clinical trials are usually done with the intent to improve the current standard of care, and randomization includes the current standard of care, and then something that we think could be added to further improve that, and often that many of the clinical trials may even be able to provide some degree of financial support for travel stay.

These could all help maybe some of these populations to access and get on clinical trials, which is one of the big goals for MD Anderson and other large academic centers and investigators such as myself.

I think the third big hurdle, of course, is that even proven extensive transplant, which still remains the most effective long-term curative approach, we don’t have as many donors for the Black and the Hispanic community proportionately than we do for the Caucasian white population.

So I think this is another kind of call to voluntarily consider becoming a donor for the national marrow donor program, for others who are in that community, because we often do find challenges finding ideal donors, and this is a very simple procedure where it…here one, all you have to do is give us a saliva swab, mail it in.. You don’t even have to go to the clinics.

Nowadays, they log it in and if you’re ever called on, it’s just a blood collection, it’s like donating in blood, and you could save somebody’s life to be probably the easiest thing to save, somebody’s like that you will have the opportunity to do in your life.

So I think it’s really, really important that those communities also start signing up and becoming voluntary donors, so I think these are three of the kind of hurdles, of course, there are many, many others, but hopefully with the big push and impetus that’s happening across the world and across the country and across the large academic centers. In the next five to 10 years, we will see more inclusiveness and more representation of all populations proportionally in the ongoing trials and publications.

My activation tip for this is understanding that clinical trials are usually developed to improve and move forward the standard of care to better outcomes, as well as knowing that there are many different approaches to getting financial support through different organizations, entities and even potentially through some of the clinical trials, as well as considering becoming volunteer donors for national marrow donor programs, so you can support potential transplant for patients from those communities, which will give them a potential curative option.

Share Your Feedback About [ACT]IVATED AML

A Look at Ongoing Acute Myeloid Leukemia Phase III Trials

February 1, 2023/in [ACT]IVATED AML, Acute Myeloid Leukemia, Advances in AML Treatment and Research, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

A Look at Ongoing Acute Myeloid Leukemia Phase III Trials from Patient Empowerment Network on Vimeo.

What are the acute myeloid leukemia (AML) Phase III clinical trials that are ongoing? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares his perspective about encouraging trials. Learn about the MORPHO Study and others.

[ACT]IVATION TIP from Dr. Daver: “The maintenance with gilteritinib and the MORPHO Study, as well as the relapsed refractory study as well as the use of a e-selectin inhibitor called uproleselan, and hopefully this will lead to approval of the next batch of three or four drugs, which will further improve outcomes for frontline as well as relapsed AML.”

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Transcript:

Art:

Dr. Daver, can you speak to some of the ongoing Phase III trials in AML, what are you most excited about?

Dr. Naval Daver:

This time there are numerous ongoing phase three in acute myeloid leukemia, some in the frontline, some in the relapse setting. In the frontline setting, the ones that I’m most excited about are trials incorporating a novel immunotherapeutic pathway called the CD47 antibody that works to activation of macrophages, these are looking at a very high-risk molecular group of acute myeloid leukemia, the TP53 in adverse cytogenetics, and there are two randomized phase threes with this agent, one focused on TP53 mutated AML looking at the azacitidine and magrolimab versus the current standard of care FDA-approved azacitidine-venetoclax (Onureg or Vidaza-Venclexta) in TP53 mutated.

The other is actually looking at all older unfit AML so trying to improve on azacitidine venetoclax doublet with a triplet, so this is looking at azacitidine venetoclax magrolimab versus azacitidine-venetoclax placebo so if both of these trials are positive, then this will lead to incorporation of immunotherapy in the frontline setting in AML, which is exciting and something we’ve been working towards for the last 10, 15 years.

The other Phase III trials in the frontline setting or in the maintenance setting really that I’m excited about is called the MORPHO Study…this is using a FLT3 inhibitor gilteritinib (Xospata) as a maintenance post-transplant, so we know FLT3-mutated patients respond well, when they receive intensive induction FLT3 inhibitor, we still need to take them to transplant because even though the initial response is good, many can relapse.

So we actually try to give to the cycles of intensive induction for the move to transplant, and then if we start there, we still see at about 40 percent of these patients can relapse in the next three years, so this has led to efforts to add a maintenance FLT3 inhibitor gilteritinib single agent post-transplant as a maintenance for one to two years versus placebo observation, which has historically been a standard of care, and so this is being looked at a large multi-center called the MORPHO Study that we hope to get data from in the near future.

Another study in the similar design that’s being done by the UK cooperative group is looking at maintenance with the oral azacitidine, post-transplant for non-FLT3, so similarly, can we overall improved outcomes not just for FLT3, but the general patient population is going to transplant by using the maintenance oral azacitidine post-transplant versus placebo.

And in the relapse setting, there is a very novel unique oral therapy drug called uproleselan, which is an e-selectin inhibitor, and this agent is now being combined with traditional salvaged chemotherapy such as FLAG-Ida mec versus the placebo mec plus FLAG-Ida or mec in the relapse setting.

And that’s what he’s actually been completed to enrollment, and we’re hoping to hear data from that in the near future. So these are the major randomized studies focusing on TP53, FLT3, and relapsed refractory AML that we’re looking for in the near future and hopefully could lead to two or three more new approvals in the AML space.

My activation tip for this question is that there are ongoing numerous frontline Phase III as well as relapsed refractory Phase III, targeted immunotherapy approaches, specifically among these we’re excited about the CD47 antibodies. The maintenance with gilteritinib and the MORPHO Study, as well as the relapsed refractory study as well as the use of a e-selectin inhibitor called uproleselan, and hopefully this will lead to approval of the next batch of three or four drugs, which will further improve outcomes for frontline as well as relapsed AML.

Share Your Feedback About [ACT]IVATED AML

AML Clinical Trials Critical to Treatment Breakthroughs and Improvements

February 1, 2023/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

AML Clinical Trials Critical to Treatment Breakthroughs and Improvements from Patient Empowerment Network on Vimeo.

Why are acute myeloid leukemia (AML) clinical trials so critical? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center shares his perspective about clinical trials. Learn how clinical trials help both current and future AML patients.

[ACT]IVATION TIP from Dr. Daver: “Clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward.”

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Transcript:

Art:

Dr. Daver, what is the importance of clinical trial participation as it relates to breakthroughs in AML, and what advice do you have for AML patients considering a clinical trial?

Dr. Naval Daver: Clinical trials are critical for the progress that we have already seen an acute myeloid leukemia, the drugs that have been improved in the last six, seven years, including venetoclax (Venclexta), FLT3 inhibitors, midostaurin (Rydapt or Tauritmo), gilteritinib (Xospata), hopefully quizartinib other emerging targeted therapies…IDH1, IDH2 inhibitors, menin inhibitors, CD47 antibodies, we’ve learned about all of them and have got approvals and many of them through the ongoing clinical trials.

I think it’s very important for patients to realize that in most large academic centers, we will only participate in the clinical trial if we think it has the potential to improve the standard of care in the future. There’s very little incentive for academic investigators or clinical investigators, such as myself, we’re very, very busy to get involved in a trial if we don’t think that it has the potential to improve the outcome or change the nature of AML therapy in the future, so a lot of patients often ask me, Oh, I want the randomized or placebo arm. There is no real placebo alone in any AML study that I’m aware of, most of the studies will use standard of care, which is what you would’ve gotten wherever you were getting treatment at home, locally, community hospital versus a standard of care plus where the new drug will be added, whether it’s the FLT3 inhibitor, the CD47 antibody, the menin inhibitor

So there’s a good chance, 50 percent that you’re going to get standard of care plus that we think has the potential to improve the outcome, of course, you never know, that’s what you do, the trial, but we think based on the previous pre-clinical data to pass when the page to deliver this looks like it will improve the outcome for this molecular or site group versus standard of care, which is what you will have gotten.

So I think it’s important to realize that you will never get less on standard of care and any clinical trial, at least in the AML field, and at least in our experience that they understand.

Now, beyond that, there’s also a Phase I in two states, and those are the ones that we focus on quite a bit at MD Anderson, these are single arm studies, meaning everybody will get the investigational agent combo, so azacitidine (Onureg or Vidaza) and venetoclax (Venclexta), we were one of the first sites to work on and leave this study and all of our patients in 2015, 2016, we’re getting this regiment, it was not approved to much later in 2019, 2020, and for those three, four years, our patients, hundreds of patients were able to get that combination, which probably cured many, many more than would have been cured to the standard of care until, of course, I’ve got a pro four years later, but for an option, of course, you cannot wait four years, so I’m a huge believer in clinical trials, I think it’s really, really important, both for the patients themselves as well as for the field, for us to be able to move the entire AML field forward for the next decade, and I would very strongly consider looking at or discussing with your treating physician trial options, and then you can look at them on your own through clinicaltrials.gov, or other sites with leukema and lymphoma that give a lot of information on clinical trials.

So my activation tip related to this question is that I think clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward, all of the clinical drug approvals in progress we have seen in AML in the last six, seven years have come through clinical trials that patients in the past have agreed to kindly participate and helped probably themselves by getting better medications and combinations, and definitely the field to move forward, so definitely a big proponent for clinical trials.

Share Your Feedback About [ACT]IVATED AML

What Different AML Subtypes Are More Prevalent in Certain Demographics?

February 1, 2023/in [ACT]IVATED AML, Acute Myeloid Leukemia, AML Activated, AML Activated Experts, AML Clinical Trials, Access, and Health Disparities, AML Newly Diagnosed, AML Programs, AML Programs New, AML Treatments and Clinical Trials, AML Video ND, AML Video TC /by Kara Rayburn

What Different AML Subtypes Are More Prevalent in Certain Demographics? from Patient Empowerment Network on Vimeo.

Are some acute myeloid leukemia (AML) subtypes more common in some demographic groups? Dr. Naval Daver from the University of Texas MD Anderson Cancer Center discusses different forms of AML. Learn about the extent of knowledge about AML subtype demographics.

[ACT]IVATION TIP from Dr. Daver: “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.“