Mary (00:01)
Hi everyone, welcome to the third episode of the 2025 season of the Health Tree Podcast for AML, where we connect patients with AML to the research and information they need to know about. If you've been with us before, welcome back. If this is your first time joining us, welcome. We're happy to have you joining our AML podcast community. My name is Mary Arnett. I'm your host and AML education manager here at the Health Tree Foundation.

The goal of this podcast is to make research and new information about your disease easy to understand and accessible. If you've ever found yourself overwhelmed by clinicaltrial.gov or a medical abstract, we're here to help change that. The topic of today's podcast is identifying the gaps and potential solutions to barriers to care for the AML adolescent and young adult or AYA population, specifically pulling from a research abstract titled, Evolution of Survival Disparities Among Young Adults and Adolescents with AML in the US.

I will link this in the episode description if you want to take a look and read the abstract further. We're going to be joined in just a few minutes by Dr. Erin Feliciano, a researcher on the study I just mentioned. Before we bring her on, I want to give you a little introduction. Dr. Feliciano is an AML researcher focused on the AYA population at Mount Sinai Hospital in New York City. AML is a complex and aggressive disease, but science is constantly evolving.

This week, we're talking about AML and young adults learning about the latest breakthroughs, unique challenges in treatment, and what's next.

Stick around until the end of the episode when I'll be back to share my final thoughts on today's interview, as well as some additional resources you can dive into related to today's topic if you want to keep learning. And now, without further ado, let's bring on Dr. Feliciano.

Mary (01:36)
Dr. Feliciano, thank you so much for joining us.

Erin Feliciano (01:39)
Well, thank you for having me today, this afternoon. And I'm really happy and excited to speak about the topic that's very close to my

Mary (01:47)
So I want to start with giving a little bit of background and helping to set the scene for what we're going to be talking about today. So I love to start with the why behind research. So if you wanted to share, kind of why you were interested in this topic, and why this research matters to you.

Erin Feliciano (02:03)
Okay. So I guess I can start by talking about why I wanted to study AYAs in the first place. So just as a background, I'm interested in AML as my specific topic of research in the cancer scene, but specifically for AYAs, and the reason I am interested in looking at their, well, looking at them is because they are actually relatively rare in the AML scene.

The American Cancer Society states that the median age of AML is 69. So it's actually uncommon to have someone in that age group have AML, which makes it interesting. They are a minority. They don't have much research on them, which means that, you know, there's not to mean that they don't need it. Obviously, they need it as well as much as other people do. But it just makes it harder to do that research. And, you know, that's why I was interested in the first place. And in terms of being an AYA, it's a pretty special life stage.

Mary (02:40)
Right?

Erin Feliciano (02:57)
So I'm in it right now and it's a time of your life where you're exploring yourself, you're trying to making these life altering decisions that kind of impact how the rest of your life is going to be like. So just exploring that experience melded with the experience of being sick with AML was a very interesting thing for me and that's why I wanted to dig into this further. Now, the study I did was on survival disparities.

which is survival disparities across the board in medicine. It's basically differences in patients' experiences and outcomes with diseases that can be problematic and frankly unsettling because when you see how far medicine has come in terms of discovering new treatments, figuring out new treatment strategies for disease, you kind of think to yourself, well, like everyone should have this, right? No one chooses to have cancer or no one chooses to get sick. But...

Unfortunately, that's not the case. Some people have the shorter end of the stick, if that's how I would say it. They don't have access. They don't have the opportunity to get these treatments that are available and that should be given to them. And that's unsettling for a doctor or for anyone.

Mary (04:04)
Yeah, AML and blood cancers in general are already rare. And then to put it in an even more rare subtype or subgroup of these patients, it makes sense why there's not a lot of research. But like you mentioned, every patient matters and needs that research. So it's exciting to see that there's some work being done in this area. I'm curious, what was the main purpose of this study and why was it important to use specifically to study survival disparities in that AYA population?

Erin Feliciano (04:32)
the particular aim of the study is to look at the changes in disparities over time. This study is actually inspired by a study done in 2014, around that time, by doctors Durrani and Goh. They're hematologists, oncologists. They're currently at the Mayo Clinic in Rochester.

what they looked at initially was racial disparities from 2004 to 2014, I believe, around that timeframe. So it was really just a kind of snapshot, you know, what the data showed based on race, how the outcomes of these AYA patients are. And it did show that there are disparities already at, you know, from the get-go. So they showed that the black population had worse outcomes compared to the rest.

the Hispanic population had better outcomes. And they showed that over time, it was mostly the white population that had improvements in outcomes compared to others. So if you kind of like divide that based on race, you see trends that kind of stick out by themselves. And it's 2025. So you think that, it's been 10 years. And in those 10 years, so many advancements have occurred in terms of AML. The research is fascinating.

Mary (05:42)
right?

Erin Feliciano (05:44)
It's very fast, people are finding cures. You know, they're working hard to get these cures. So you think to yourself like, well, did the trends actually, are they parallel? Did they kind of go with each other? And that's the question we wanted to figure out because we had the data already from 2014 to 2021 we found out that unfortunately there have been strides in certain areas, but no, not all areas. And that is unsettling because it's a disparity in itself.

when you see that not everyone is making it to the finish line at the same rate.

Mary (06:16)
So let's go ahead and dig into some of these results. I found them so fascinating and so interesting and I'm excited to be able to hear your thoughts

So the study looked at differences in survival by race. So why was this a factor that was chosen and what did we already know about the impact of race on AML outcomes before the study?

Erin Feliciano (06:37)
I mentioned how Drs. Durrani and Goh had this very interesting study where they kind of made the initial snapshot of what racial disparities are for AOAs with AML. And they found out based on the data they had,

on race and they were like, Let's look if there are certain trends based on race, you know, and they found out that yeah, there are so there are some outcomes that Depending on race you have a certain advantage. in terms of better survival outcomes So unfortunately the black population had worse overall survival outcomes.

and the Hispanic population had better outcomes, the white population had better improvements in terms of like the rates of improvement was better for the white population. And that's why I continue that study because this is, you know, I wanted to check, I wanted to know, okay, we already know there's a problem to begin with. Were there any improvements that happened over time?

Interestingly enough, in the space of the AYAs with AML, there have been studies that looked at outcomes based on other factors such as insurance, so private versus public, whether or not they were treated at academic centers versus community centers. So wherever they were based, does it make a difference in terms of their outcomes?

Mary (07:46)
So the study found that Black patients continued to have worse survival rates compared to White patients. Do you have any ideas on why this might be a possible continuing disparity?

Erin Feliciano (08:00)
So one thing I would think of is difficulty to access treatment because of financial and logistical reasons, I did some reading recently on the status of the black population here in the US in terms of poverty. And right now, based on data, the US black population still are at relatively higher risk of poverty, which

puts you at a disadvantage. I mean, it goes without saying, right? If you are with lack of financial resources, it affects the way you can access treatment because you need to work to get insurance and that insurance is your key to getting treatment. Problem is when you're sick, it's not easy for you to go to work, right? You have this life.

Mary (08:47)
Yeah.

Erin Feliciano (08:48)
altering disease, this life-threatening disease, you have to go to you have to go to infusion centers almost daily just to get the treatment and you can't go to work because you're exhausted, you're tired. So you lose your insurance, you have no money to kind of help you get through this and you don't have access anymore to treatment because of that lack of insurance. So this is one of the reasons why. Another thing is logistical.

Obviously, you are of lack of resources and you don't have the means to get to the centers, that's one thing as well. You live in an area the treatment centers are not as accessible to you, they can't come to you, then you can't get the treatment as well. So there are various reasons for that. One thing I could think of really is financial, logistical. an interesting thing was,

social support because when you are sick with AML, to get a bone marrow transplant, which is indicated for some people, you need a caregiver, a round the clock caregiver for a certain time of the treatment phase. And if you cannot secure a caregiver from the beginning, the transplant cannot happen. And to secure a caregiver right now is, can only imagine like how difficult it is because you need to have to ask someone to stop working for you.

so that they can care for you. And these people are not gonna get paid to care for you. It's time, it's a time commitment. And if you are at this place in your life where you need to work and people you know have to work as well, it's hard to find the luxury to get someone who can commit to you like that. So I think that definitely puts someone at a disadvantage as well.

Mary (10:23)
those are such big societal issues that are impacting this vulnerable group of AML, AYA patients. And it really puts into perspective how complex of an issue this really is. And you mentioned health insurance. So how do health insurance and other health conditions impact survival for these AYA, AML patients?

Erin Feliciano (10:47)
In this day and age, health insurance is the main key for you to get treatment for AML, for other things, for most things, right? The AYA population is so special in a sense that this is the prime of your working age.

At this age, you don't really have many security blankets, if you know what I mean. It's hard to find that special support because at this age, there's not much. Most of the people, unfortunately, you know, who are your age are working and they have the energy to work. And this already puts you at a disadvantage. And it's heartbreaking, but I have seen people with or without AML who are sick and they need care. And they tell me, well, I lost the medicines I needed because I lost my job and I can't.

Mary (11:05)
Yeah, yeah.

Erin Feliciano (11:26)
go to work because I'm sick. So it's a vicious cycle and it's heartbreaking because it's not like they don't want to work, but they can't, right? So if you don't have health insurance, then you can't get treatment. If you can't get treatment, then you can't get cured. You can't get managed for your disease. you can't, the cycle just keeps going and going. And you're like, when is this going to stop? Who's going to stop or like step in and help this person? So that's the health insurance part.

Mary (11:28)
Wow.

Erin Feliciano (11:52)
In terms of other health conditions, one thing I'm concerned about and I think about is mental health for these patients because having a disease like this, especially at that special life stage, I don't blame people for feeling anxious, depressed. It's a hard time in your life, right? And when you see people out there living their normal lives, they're not sick with anything.

Mary (12:12)
Right.

Erin Feliciano (12:21)
And it's heartbreaking. if, you know, but if you feel that you're anxious, depressed, you don't have enough social support, it's harder to get treatment.

Mary (12:28)
if you're a patient and you're listening to this information and you belong to one of these groups that are affected by these disparities, what should they be taking away from these findings? Are there resources that you're aware of that patients can be reaching out to or trying to access? What do they do with the situation that they found themselves in?

Erin Feliciano (12:52)
So what I want to tell the patients who find themselves in this situation is that, first of all, share your stories. The clinic is a safe space. You think that the doctor's only there to kind of talk to you about your disease, but your disease comes with everything else. How you're feeling, how you're living, how's your day going, how are you able to live your life despite this disease?

And be, well, I don't want to say be brave because I don't think it's a question of bravery. I just want them to know that we want to know what's going on. There are so many people on your care team. They're doctors, there are nurses, there are social workers, and it's their job to make sure that other non-clinical issues are being managed there are so many other people involved that you

don't think are, but actually are involved. And there's so many resources that are there to help you guys. So share your stories. The clinic is a safe space for you to tell us what you need. And we honor each and every story that you have.

There are moms, young mothers, young fathers, so for them it's a different story. There are immigrants who come here to work fresh. They landed here and they're about to start their lives anew and they're stuck with this disease. They're all alone, their families are all back home and that's a different story altogether. Yeah, so and you have other stories just like that.

Mary (13:58)
Right?

Erin Feliciano (14:16)
And I'm sure there are many more experiences that have not been shared that I wanna know just so I can get a bigger picture of like, hey, these are what the young adults need, especially at this time and age. So this one, wanna let them know that they're not alone and that we honor your stories and we wanna know what they are so we can help you.

Mary (14:36)
I think that's

it really highlights the examples you were just giving. I mean, the diversity there, you know, young parenthood, or we've talked about being, you know, being in college or like you mentioned, being newly in the United States and trying to start your life and then having this disease come in, which, you know, knocks a lot of people off their feet in more stable conditions. So.

really highlights the diversity of experience in this population and the importance of sharing their story and sharing their experiences so that we can make sure that those things are able to be addressed and resources can be created that fit the needs of this unique demographic. I'm curious, we've talked a lot about

the direction, there's a lot of direction that this research has caused your team interest in and wanting to look into these ideas further. And from what we've talked about, the study suggests that there are medical advances that benefited some groups more than others. So from the medical perspective, from that clinical side, what kinds of changes need to be made in order to be able to have all patients benefiting equally from these advances in treatment?

Erin Feliciano (15:44)
So one brilliant idea I heard another institution tried to do is kind of build a financial screening assessment tool that's systematic and built into their system. So in the cancer space, at least, we have this thing called tumor board, where we have different kinds of clinicians come in, surgeons, medical oncologists, radiologists, all these specialties come in and look at the patient from a clinical lens, right?

But then one brilliant doctor was like, hey, let's do this. instead of looking at their disease, let's look at their financial risk. And so we don't just have doctors in the room. We have social workers. There could be lawyers in the room because lawyers can help from a legal perspective in terms of what can be available for certain patients. And there can be nurses as well, nurse practitioners or nurses who know the patients also very well. And instead of just really looking at

them in terms of someone with a disease, you're looking at them with someone with the disease, but also who needs help financially. So you look from different perspectives like, how can we all work together in terms of making sure that this patient does not end up falling off because they don't have the financial means to get their treatment, right? Whether it means they need help at home because they have young kids, whether it means their job is making it hard for them to get treatment.

I think if we build that in from the beginning and we catch these things early on, then it makes the problem, at least it helps mitigate the problem. And we know from the beginning, like what things we need to prepare for so that this patient is able to continue getting treated for AML. Another thing I also thought about was data because I was only really limited to the data I had in terms of AYAs with AML. And I had these findings, but

There are so many other data points we can get, like are you a student? Are you working? What's your median income? Are you a parent? Do you live alone? Do you live with your kids, but just you and your kids, no one else at home? There are so many things we can get. Of course, this is contingent on whether or not the patient wants to share. We're not going to force them to share things they don't want to share. But as long as we...

Mary (17:50)
Right?

Erin Feliciano (17:53)
tell them like, hey, this is data that does not leave this place. Like this data is actually meant to be taken for your benefit. And we want to know and get a profile of you as a young adult with AML. Just so we get a better picture of who you are. And there are other people who may be experiencing the same things. And if we have that data, we can actually act on that. And we can see certain trends as well, just beyond race and other objective things.

Mary (18:21)
Yeah, it really highlights what you were talking about earlier and the importance of sharing your story and sharing where you're at in life and the implications that that data can have on being able to take your situation and your unique story and how this disease and the treatment and everything has impacted those individual people and turn that around to be able to benefit other patients who are gonna come after them who...

are in similar situations or are experiencing some of those same disparities or difficulties. really, someone sharing, whether they live by themselves or they live with someone else, can really benefit other people, even if it may not feel like it at the time when you're sharing.

Erin Feliciano (19:01)
Mm-hmm.

Yeah, for sure. So just wanting to know their story as much as possible, as much as they want to share. You obviously want to make them as comfortable as possible because getting treatment for AML is a long game. And we're your partners from the beginning. So the more we get to know about you, your life is so rich with so much experience, especially in the AYA stage. And we just want to be a part of that.

Mary (19:13)
Right?

I really love the idea of that, the kind of altered tumor board that you were talking about looking at the patient in a more holistic sense, their financial situation and other potential barriers to their receiving care. And again, the implications that that can have for other patients as more patients are being seen in that holistic sense, how much better we'll be able to as a whole field and,

advocacy and the medical centers how we'll be able to better suit our resources and our abilities to those patients based on the things that we're learning about them.

are there any other specific efforts or research that you're aware of in this subset of AML and AYA that patients should be aware of?

Erin Feliciano (20:06)
terms of other research, know there are clinics that are available for AOIAs in general. I know there's one that looks at fertility because again, the AOIA stage is so vast. You can talk about so many things in terms of their experience, career, wanting to start a family, education, That life altering stage where you make these big decisions.

So again, there's one on fertility. There was one question I just had randomly. I wanted to like look at how education is impacted by this treatment. Just meeting one student and going like, I heard you were at school, university X, how's it going? She's like, well, I'm on gap year. And I'm like, I wonder how that feels. know, like how many years did you have to take off? Was it hard for you to get a gap year? How are your studies going to be impacted after that?

Mary (20:38)
Mm.

Erin Feliciano (20:56)
So that was just one question from one patient. I'm so sure there's more than one patient who experiences this. So that was one question in my head. I didn't get to dive into the research yet and see if this was specifically looked at, but that's one thing. But AYA's with AML is a very specific subset. And not a lot.

Mary (21:01)
Right.

Right.

Erin Feliciano (21:16)
But that's something you want to change.

Mary (21:17)
So what kind of role do things like clinical trials play in improving treatment access and outcomes for some of these more underrepresented groups?

Erin Feliciano (21:26)
clinical trials are meant to test treatments for patients you get treatment for cancer, we usually give standardized treatment, right? There are standard, standard of care is how we say it. But there are certain subsets of patients who have failed the standard of care and they need bigger guns for lack of a better term.

And the bigger guns are being currently worked on in the labs. know, people have been researched for years to kind of develop these bigger guns. And that's why these clinical trials are made. They're developed so that these bigger guns can be reached to those who need them the most. Not, so like I mentioned earlier, you know, these bigger guns aren't reached by most. There are people who need them. But unfortunately, the accessibility is a question mark. You know, they don't get it. And these are the patients on their representatives.

you know, people who cannot reach these bigger guns easily, which is unfortunate, but of course people have been working on that right now. I spoke to someone in a cancer center and she actually changed my thinking. She said that, hey, did you know that these academic centers actually can, they serve everyone and not just people who have money.

people who have insurance, it's possible. And I've seen success stories of people at risk who are underrepresented, who are able to reach these big guns. And it's just a matter of communication, making sure that these people are aware this exists. Because when you think of clinical trials, you're like, my gosh, this is like in a big academic center in a fancy city. I'm never be able to, know, they're never going to take me, right? But

Mary (22:59)
Right.

Erin Feliciano (23:04)
I think people have to be aware that there are opportunities out there and there are people who willing to help you. And it's great, it's wonderful really when you hear about these stories, because you hear about social workers and lawyers really and doctors really trying to work together and get this patient the treatment they need. So communication is one thing. I think community engagement is another. Not everyone has the luxury to live five minutes away from an academic center, but I think having the community or like

Mary (23:22)
Mm.

Erin Feliciano (23:31)
just engage and kind of connect them with the academic centers. I think this is already trying to be done. Building stronger connections with the academic centers so that they're able to work more closely together and have the treatments usually available in the academic centers available in the community centers. So there are logistical things you need to work around that and communication as well. So that's one thing. And I think having someone from the community tell these patients like, hey,

These academic centers are not just ivory towers, they're actually open to us. I've seen community engagement work in so many ways. And word of mouth is a strong thing. I like it's actually a very, very strong thing when these patients know this knowledge from someone they're so familiar with in the community and they're like, so it does work. And you're like, yes, don't be afraid. This opportunity is open for you. So I think that's one way.

like clinical trials can reach the underrepresented, the wonders of clinical trials, the benefits that they get can be reached to those who are at risk.

Mary (24:31)
Yeah, I think you highlight such an important point of the accessibility of academic centers and academic information in these more community clinic, community center locations and the importance of the collaboration between the community and the academic center, making sure information is being shared and providing patients with a well-rounded team of

know, doctors in an academic center who, like you said, maybe have access to additional resources, treatments, and that collaboration back to their community doctor who is closer and is better, you know, suited for some of those day-to-day type treatments so that patients have access to someone instead of having to travel hours. It's such an important relationship that I would encourage patients who are seen in a community center to

Erin Feliciano (25:14)
Mm-hmm.

Mary (25:21)
start the conversation with their doctor and see what's available and if it's possible to start that collaboration. any doctor I've talked to in this role from the community and from the academic center is open to those kinds of conversations and wants to best suit the needs of their patients. So even just being aware that that is a conversation you can have with your doctor I think is big.

Erin Feliciano (25:42)
sure. Don't be afraid. Again, the clinic is a safe space and everyone is there to help you. ask and we're working together. So that's the truth serum, I would say.

Mary (25:53)
So in your mind, what are the next steps in research in order to better address these disparities? If you got to choose the direction that research goes next in order to start to tackle some of these problems, what would that look like?

Erin Feliciano (26:07)
So my knee jerk reaction actually after finding these results was to do more qualitative studies. was one step I wanted to do. And that's because when I started thinking about, my gosh, these numbers and how they presented themselves, there has to be a reason why. And just looking at these numbers won't really help you because you have to kind of dig further and really look at their experience as a whole. Numbers cannot capture the fact that you are a mother.

struggling with this or cannot capture the fact that you were this close to graduating, but you got sick. And you can only do that by actually opening the question and going hey, what's your experience like? And this is what qualitative studies can answer. And this is something my team and I were hoping to do as one step forward into figuring out why these racial disparities exist.

Mary (26:35)
Right.

Erin Feliciano (27:01)
Just hearing your stories, kind of looking for trends based on that and kind of realizing, hey, that these certain number of people actually are experiencing the same thing, or these numbers of people are actually experiencing this. And what are they doing to kind of manage that? And how do we bring that solution on a level that's, know, the clinical level, on the system level that we can leverage to spread to other patients who are at risk?

Mary (27:28)
I think it's so interesting. I want to thank you for coming and talking to us today about this. think it's such an important area of research and like you mentioned, for a group of people who there isn't a lot of information out yet. And so I think this earlier information gathering time is really important for the future of how AYA AML patients are treated. And I think all of the research you shared is so interesting and gives us so many new questions and

know, questions are what power research. So I think it's amazing to take all of the stuff that we've learned, all of the information, take those questions and then move forward with them. And we are excited to see where this goes and what your team decides to do next. And we'll definitely keep our community in the know about what's happening

Erin Feliciano (28:12)
Yeah, I like how you said that. Yeah, research is obviously based on questions. you know, research isn't just a like an us thing as a doctor thing, you know, if patients have questions, you are more than welcome to share them. And I would love to hear your questions from your end, because that would fuel our research as well, because I don't see things the way you do as much as I would love to, you know, understand as much as I want. I'm still not you. I don't have your lens. I don't have your perspective. And you're seeing things

different from the way I'm seeing it. And if there's a research question, if they share with you, or they can let me know that you would love for us to look deep into further, that would be wonderful and more authentic because it's coming straight from you and it's not just us from the other side. You know what I mean? So I would love if patients reach out and go hey, you know, I'm going through this. I wonder if this is the same for other people. And, you know, we'll work on that. We'll explore that with you as well.

Mary (28:58)
Yeah.

Erin Feliciano (29:09)
and we'll find answers together.

Mary (29:12)
That's amazing. I will make sure that I include my email in the description of this episode when we release So excited to see how this goes and I wanted to say thank you again for taking time out of your day and recording this with us and sharing your thoughts and the research you've been working on.

and I hope you have a great rest of your day.

Erin Feliciano (29:29)
Thank you. So thanks, Mary, and thanks to Health Tree for all the work that you do. And thanks to all the patients and providers out there who continue to care for these patients. Again, close to my heart. And I really hope to find more solutions for you guys.

Mary (29:45)
I really appreciate Dr. Feliciano's unique insights into the AYA population from a research perspective. As she explained, all AML patients are battling their disease from multiple fronts. Remembering the unique life stage that AYA's are in and how that life stage can add additional layers to their ability to manage their treatments was really powerful to me. There's a lot of work to be done in this space as Dr. Feliciano laid out, but the work that's already being done was really exciting to hear about.

If you wanna keep learning, we have additional resources you can look at. One I wanna highlight is an article our team published about health inequity that goes into cases and potential solutions across the AML space I also wanna mention that like in pediatric AML, we are actively working to expand our resources and support in the AYA population and are putting together a separate patient advisory board specifically for this population.

to help us inform how we develop resources and what support is needed that Health Tree can help provide. If you fit in that demographic and are interested in being a part of this advisory board, please send me an email so I can set up a time for us to meet virtually and explain the opportunity a bit more to see if it's the right fit for you. Thank you so much for joining us on today's episode of the Health Tree Podcast for AML. I hope you learned something new.

Over the last three weeks, we've heard experts in the AML field talk about unique issues faced by AML patients and how research is helping to identify and address these issues. If your interest has been piqued and you're considering talking to your doctor about participating in a trial or any form of research, join us next week for our final episode of this season where we're going to talk about all things clinical trials. We'll go over myths, common patient questions, and things you should know as you consider participating in important AML research.

I would love to hear your thoughts on today's episode, so share them with me in a comment or send them to me in an email. You can find my email in the episode description. Until next time.