AML Access and Affordability Archives

The impact of cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many AML patients and care partners.

More resources for AML Access and Affordability.

Expert Perspective | The Value of Empowering AML Patients and Care Partners

 

How can patients with AML and their care partners feel empowered? Dr. Eric Winer, an AML expert, discusses the crucial role of the healthcare team and emphasizes the importance of open communication, asking questions, and understanding the care plan. 

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

As a provider, Dr. Winer, how do you empower care partners and patients who have been diagnosed with AML? 

Dr. Eric Winer:

From a provider standpoint, one of the most important things we need to do is listen and try to understand, first of all, what the patient is going through, and what the patient needs. Like I said, that’s where this is a team approach. It’s a team approach from not just a standpoint of patient and caregiver, patient and physician, patient and nurse practitioner or physician’s assistant, patient and social worker. 

This is a traumatic experience, and there are things that we can try to do to make it less traumatic, but one of the best ways to make it less traumatic is making sure patients are informed, that patients understand plans, that patients understand what’s going to be happening. One of the biggest concerns with any of these diseases is the unknown. There is a certain amount of unknown that I can’t predict.  

I can’t say to somebody you will or will not respond, but what I can say is, listen, here is what we’re going to be doing over these next few weeks, and here is our short-term plan, and here is our long-term plan, and making sure that we’re all on the same roadmap.  

I think that’s really important in terms of empowering the patients. The other thing that is important is that the patients should feel comfortable asking questions, because we’re not expecting our patients to be experts in leukemia. We’re expecting our patients to be the patients. I think of us, in terms of the clinicians, as being sherpas. We’re guiding people through this process, but the reality is they’re doing all the work. We’re just the guides, and so it’s important as guides that we make sure all these questions are answered, all of the information is given to the patient, and that the patient asks for that information.  

The other thing that is important, that is a little overlooked, is taking care of the caregivers as well. It’s very difficult to be a patient, but it’s also difficult to take care of a loved one or a friend during this time. So, it’s important that the caregivers have an adequate understanding as well about what’s going on, and what we expect to be coming forward in the next days and weeks so that they can plan for these processes as well.  

Distinguishing AML Symptoms and Side Effects | Why Communication Is Essential

 

How can patients determine if they are experiencing AML symptoms or side effects of treatment? AML expert Dr. Eric Winer underscores the importance of open communication with the healthcare team for timely, effective care, and better outcomes.  

Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Advice | How to Elevate Your AML Care and Treatment

Expert Advice | How to Elevate Your AML Care and Treatment

Advice for Managing Emotions Around AML

Advice for Managing Emotions Around AML

Transcript: 

Katherine Banwell:

It may be difficult to distinguish disease symptoms from treatment side effects. What advice do you have for patients who are experiencing any issues that stem from their AML? Why is communication important? 

Dr. Eric Winer:

When I speak to my patients, I say to them, your job is to tell me everything that is going on. My and my team’s job is to figure out what’s important and what’s not because that’s what we’re trained to do. I think that brings up two aspects. One is the importance of openness and honesty, because we can’t treat a problem if we don’t know there is a problem. We have a plethora of drugs that we can use for different symptoms, but if we don’t know the symptoms, we can’t treat them. A perfect example is if somebody is nauseated, we can’t tell by looking at them if they’re nauseated.  

We can tell when they’re vomiting and at that point, it’s too late, but if we know ahead of time they’re nauseated, then we can actually give a number of different treatments. What I say is it’s not just telling me, it’s telling people on my team as well, because it’s important to have an entire team involved in the care. So, for example, at Dana-Farber, we don’t just have a doctor-patient relationship. We have a doctor. We have a nurse practitioner. We have a physician’s assistant. We have nursing staff. We have social workers, care coordinators. It’s really a gigantic team effort, all working to try to make the best outcome and best situation for the patients. 

Expert Advice | How to Elevate Your AML Care and Treatment

 
 
How can patients elevate their AML care and treatment? Dr. Eric Winer from Dana-Farber Cancer Institute emphasizes the importance of actively participating in the care journey, staying informed about treatment plans, and seeking a second opinion.
 
Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

Related Resources:

Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask Your Doctor

AML Care Essentials | Health Literacy and Recommended Resources

AML Care Essentials | Health Literacy and Recommended Resources 

Transcript: 

Katherine Banwell:

This interview is part of PEN’s Elevate series, which encourages patients to take an active role in their care to improve outcomes. What advice do you have for AML patients who are seeking to elevate their care?  

Dr. Eric Winer:

I think it’s important for people to be an active participant in this care. While we recognize that not everyone has medical expertise when they are going through this, it’s important that they are informed that they would like to be informed. It’s important that they have a full understanding of what’s going on in terms of the treatment, the plan, the short-term plan, and the long-term plan. 

So, there is a lot of information that needed to be digested. What’s important to note is that it doesn’t all have to be digested at that very moment at the time of diagnosis. These are processes. What I tell people is that this is not going to be your only opportunity to talk and ask questions. This is something that we’re going to be going through and doing this journey together. So, I think it’s important that they become an active participant in that journey, not just with themselves but also with whoever their caregiver is, and whoever is important to them that’s going to be going through this journey as well. 

Katherine Banwell:

I understand that some AML cases require treatment shortly after diagnosis. Is there room for a second opinion, and if so, what are the benefits? 

Dr. Eric Winer:

So, there often is room for a second opinion. There are times, quite honestly, like you said, where patients have a really acute problem when they come in, along with the diagnosis, or that the diagnosis has gotten to a point where we need to initiate therapy as an inpatient, urgently. That is becoming less common. It used to be, when I started doing this, that if you had a diagnosis of AML you were admitted to the hospital, and you stayed there until you completed your first round of therapy. That is not the case now.  

Generally, what we’ve learned is that there are studies that show you can actually delay therapy for a period of time in order to make sure that other things are established. Getting a second opinion is very important, particularly as a tertiary care center where physicians specialize in these types of diseases. And so, I think it’s very important to get expert opinions, not just in terms of how to treat the disease but also diagnostically, and to make sure the correct tests are run, the correct molecular studies are run, in order to figure out exactly what would be the best treatment for your individual version of AML. 

AML Treatment Planning | Key Questions to Ask Your Doctor

 
What key questions should patients ask about their AML treatment plan? Dr. Daniel Pollyea provides key advice and emphasizes the importance of sharing symptoms, while also highlighting the critical role of a care partner for support and advocacy in AML care.
 
Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 
 

Related Resources:

How Is an AML Treatment Plan Determine?

How Is an AML Treatment Plan Determined?

AML Treatment | Understanding Induction and Consolidation Therapy

AML Treatment | Understanding Induction and Consolidation Therapy

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

Transcript: 

Katherine Banwell:

Dr. Pollyea, when choosing a therapy what questions should patients be asking their healthcare team about a treatment plan? 

Dr. Daniel Pollyea:

So, at the time of diagnosis I think it’s a reasonable question to say, “Is my disease amenable to a cure? Can I be potentially cured?” and “Is this treatment part of a plan for a cure?” If that is possible, then I would want to be walked through the steps that that’s going to executed. And if it’s not possible for me to be cured, then I would like to discuss what is the treatment plan that could potentially give me the longest duration of a remission and the best quality of life. And so, that’s the conversation that I think is important to have.  

And then, everything that we discuss comes into play there; an individual’s sort of appropriateness for intensive chemotherapy versus less intensive regimens, and also the disease biology and what that maybe make them a candidate for.  

Katherine Banwell:

Are there certain symptoms or side effects a patient should share with their care team?  

Dr. Daniel Pollyea:

Yeah. So, we have a very, very sort liberal request that really anything, it should be shared. We have a 24/7 number to call with one of us on-call at all times. So, it’s very difficult for a patient to kind of be able to appreciate, when they’re going through such dramatic changes, “Hey, is this expected or not?” So, we really emphasize oversharing concerns about symptoms.  

All these drugs have very different side effect profiles, and some of them are common and some of them are less common. The disease itself can cause symptoms and clinical issues. So, instead of really trying to educate yourself in an impossible way on what could be or is not related, it’s better just to ask.  

Katherine Banwell:

What is the role of a care partner when someone is in active treatment? 

Dr. Daniel Pollyea:

Having a care partner is crucial. This is physically and mentally extraordinarily stressful on the body and on the mind. Having that support person for those purposes is really important. Having that person be an advocate for a patient to ask those questions that may not be getting asked, to reframe questions to get the best answers is really, really important.  

And then, there’s the more mundane things; just getting patients to their appointments and kind of keeping their morale up and those things. So, there’s data and research on this that patients with caregivers, they have better outcomes. When it comes to a transplant, a caregiver is not an option. You must have a caregiver. And the importance of that will be sort of relayed to you in the context of a discussion about a transplant. But a caregiver in the setting of a transplant is so important that it is a requirement to even be considered for that.   

AML Care Essentials | Health Literacy and Recommended Resources

 

How can patients learn about acute myeloid leukemia (AML)? Dr. Daniel Pollyea defines AML, how the condition develops, and highlights the importance of health literacy. Dr. Pollyea also recommends resources like the Leukemia & Lymphoma Society for learning about AML and shares key questions to ask your doctor.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

Related Resources:

How Is an AML Treatment Plan Determine?

How Is an AML Treatment Plan Determined?

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Dr. Daniel Pollyea:

AML, acute myeloid leukemia, it’s a type of a cancer.  You can think of it as a cancer of the bone marrow, and it’s the likely result of several abnormalities, or sometimes I call them mistakes that can occur in stem cells or a stem cell in the bone marrow. And those mistakes that occur, most times, we don’t understand why they happen.

In most cases, they’re completely out of a person’s control. This isn’t something that comes on because it runs in a family in most cases, or because of something somebody did or didn’t do. These appear to be pretty random events that occur. But these mutations that occur in these sort of stem cells in the bone marrow cause a cell to become a cancer cell.  

And over a course of a variable amount of time, these can evolve and develop into this condition, AML. 

Katherine Banwell:

Okay, thank you for that. Health literacy, which is defined by the ability to find, understand, and use information for health-related decisions, is essential. Would you expand on the term “health literacy” and why it’s important to accessing quality AML care? 

Dr. Daniel Pollyea:

Yeah. So, I think health literacy in our field is a challenge, because these are acute conditions that come on oftentimes very quickly. And these are not diseases that are top of mind. Most people don’t know somebody who’s had this. They’re not common; only about 30,000 people every year in the United States will have AML. So, it’s very hard to have any sort of background in this.  

And for most patients because of the pace at which this disease occurs, it can be very difficult to sort of read up on it before meeting with a provider or an expert or a specialist. So, there’s a lot of challenges or barriers to health literacy. But like anything, the more a person knows, the more sort of empowered they can be, the more ability they have to ask questions and seek care at sort of the optimal place.  

What I find often is that health literacy is best harnessed by a patient’s team; so, in other words, their support system, their family and friends. Because it’s so much to deal with in such rapid succession, to get this diagnosis and to usually be feeling very poorly. To also be expected to sort of have read the most relevant literature and come armed with that information is often too much at the beginning.  

So, in the beginning, I think it’s best to leave that to your support system, and then as time goes on and as you start treatment, get comfortable, health literacy in our field, it becomes a more prevalent issue. And I think that when patients learn the most about how the field has evolved and where we are, the better that they can potentially do. 

Katherine Banwell:

Well, that leads us perfectly into my next question. What resources do you suggest for boosting knowledge about AML? 

Dr. Daniel Pollyea:

AML is like so many fields in medicine, but probably more so, moving so quickly that sort of the usual Google search is not going to, in most cases, bring up the most important, the most relevant information.  

So, I think that there are some organizations out there that do a really good job of educating patients. The Leukemia & Lymphoma Society is one. They have a good website.  

They have people you can contact, and they have really good information that’s available to patients and their families. That’s where I typically recommend people start. And then from there, based on our interest in education level and things like that, there can be other resources. But I think The Leukemia & Lymphoma Society’s a great place to start. 

Katherine Banwell:

Okay. Newly diagnosed patients and their care partners are often overwhelmed, as you mentioned earlier. What advice do you give them at their first appointment? 

Dr. Daniel Pollyea:

Right. So, this is a huge challenge. Anybody in the situation would be feeling like this. So, first of all, it’s sort of like, it’s okay to feel like this. It’s normal. 

It would be unnatural to not be overwhelmed with what you’re going through; that’s an important message. And then, I think there’s this period of time between diagnosis and a plan that is particularly anxiety-provoking. And so, as your doctor and their team sort of sorts through the necessary information to get a plan together, just know that that this a very anxiety-provoking time when you’re being told that you have a really significant and serious disease, and we don’t have a plan yet.

So, making sure that you sort of comfort yourself during that period, knowing that that his temporary and that is potentially the worst anxiety you will feel, I think, can be helpful. And then, from there once the plan is sort of in place and enacting it, it really is just focusing on short-term goals.  

So, instead of thinking three steps ahead and how’s the transplant going to work, in the early days, focusing on “Okay, how am I going to get into a remission?” and “How am I going to feel day-to-day? How can I feel as best I can day-to-day? What’s the best path to a remission?” And then, once you sort of meet the goal of remission, “Okay, what’s next? How are we going to cure this?” So, thinking through sort of in short bites, I think, is best. 

Katherine Banwell:

Are there other key questions that they should be asking their doctor or their healthcare team? 

Dr. Daniel Pollyea:

Yeah. Depending on the situation, this is a disease that can be cured; and so, from the first day, asking “Is that a possibility for me? Is there a curative plan for me, and what might that look like?” I think is an important question to ask from the beginning.  

Making sure you communicate your goals and your wishes, how you define quality of life, what that means to you. And in that way, that can really help inform your doctor and their team to put together a plan that sort of is most customized to you.  

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway?

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

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

[ACT]IVATION TIP

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

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED AML

Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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

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

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

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

Transcript: 

Lisa Hatfield:

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

Dr. Andrew Hantel:

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

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

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

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

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

Share Your Feedback About [ACT]IVATED AML

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

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

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

[ACT]IVATION TIP

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

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED AML

Related Resources:

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

What Are Key Acute Myeloid Leukemia Care Barriers and Solutions?

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

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

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

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

Dr. Andrew Hantel:

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

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

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

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

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

Lisa Hatfield:

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

Dr. Andrew Hantel:

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

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

Lisa Hatfield:

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

Dr. Andrew Hantel:

I completely agree.

Share Your Feedback About [ACT]IVATED AML

How Can We Address Disparities in AML Among Diverse Populations?

How Can We Address Disparities in AML Among Diverse Populations? from Patient Empowerment Network on Vimeo.

What do acute myeloid leukemia (AML) patients need to know about care disparities? Dr. Catherine Lai from Penn Medicine discusses ethnic disparities and other factors. Learn about factors in AML care disparities and some available resources for patients to elevate their care.

[ACT]IVATION TIP from Dr. Lai: “Speak with your social worker, is there a resource that I can tap into that can help me with my care so that I can make sure that I can get the best access?”

Download Resource Guide

Download Resource Guide en español

See More from [ACT]IVATED AML

Related Resources:

BIPOC Patients Living With AML _ Mortality Rate and Favorable Genetics

BIPOC Patients Living With AML | Mortality Rate and Favorable Genetics

What Different AML Subtypes Are More Prevalent in Certain Demographics

What Different AML Subtypes Are More Prevalent in Certain Demographics?

Transcript: 

Art:

Dr. Lai, how can we address disparities in AML among diverse populations?

Dr. Catherine Lai:

So this is an extremely important topic. And there was a large study that was recently published out of Chicago that looked at the different hospitals in the area and to look at ethnic disparities between white and Black populations and did find significant differences. Unfortunately, I would say that there are many factors that go into this, and a large portion of it is education and resources, and so what I would say is that we…we need to, as physicians and also the community, be better about educating our patients and being able to have access to resources so that everybody can get the same treatment.

And so involving other societies who support cancer to just get the word out that we need to…that we need to be aware of the differences so that we can address them specifically and make sure that for patients who don’t have resources that we are able to provide for them. So the activation tip here is that asking about resources, but we use a lot of Leukemia & Lymphoma Society grants that help our patients get access to and lower the cost of drugs, but also will…they will also provide grants just to help with cost of living, occasionally, there are other societies that can help with ride shares, and so I think even if you don’t know the specific…the specific society that can help, just asking to speak with your social worker, is there a resource that I can tap into that can help her help me with my care so that I can make sure that I can get the best access?

Share Your Feedback About [ACT]IVATED AML

Financial Resources for Patients and Families

Financial Resources

Resource: AA•MDS Find Your Specialist

AA•MDS has launched a map of specialists who are seeing new patients for treatment or consultation.

It’s important for patients to seek consultation with physicians who have experience working with bone marrow failure disease. They have developed an interactive map of physician specialists in bone marrow failure disease who have worked with them in a significant way as speakers, writers, editors, and/or advisors. This map will allow you to search for physicians in your area by location using the zoom-in feature, by zip code, or by disease area utilizing the dropdowns provided below.

Please note:

  • This list is not comprehensive and there may be specialists in your area who have not yet been included.
  • Physicians may move to another institution for various reasons and may no longer be at the location noted on this map.
  • The map will be updated as often as possible.

Patient Assistance Programs (PAPs)

Patient Assistance Programs: A Guide for Patients

Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.

When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.

It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.

While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.

Find a PAP

The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.

Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.

John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.

NeedyMeds

There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs.

While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.

Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.

AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”

PAP Enrollment

Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.

The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.

 

Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.

PAP Qualification

Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:

  • Have very limited or no drug coverage from public or private sources
  • Must demonstrate a financial need based on a set income and assets
  • Provide proof of US residence or citizenship.

“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”

In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.

“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”

PAP Basics

Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.

AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.

Are PAPs Worth It?

For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.

Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”