How Can MPN Patient Advocacy Groups Help Patients?

How Can MPN Patient Advocacy Groups Help Patients? from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) patient advocacy groups can help support patients? Expert Natasha Johnson explains different ways that advocacy groups can help MPN patients in their care, her experience with advocacy groups, and other health professionals who can aid in patient support.

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“…look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help.” 

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Transcript:

Natasha Johnson:

There are several unsung heroes that work with the MPN population and are just not known, but offer great, great resources and can be utilized. First, I’ll start off saying with, there are foundations, for example, the MPN Foundation where it’s a large patient advocacy group that comes along and they establish support groups all over the United States, and they invite patients and caregivers to come and join, whether in-person or through Zoom. And through those meetings, sometimes experts are brought in and taught. Sometimes the nurses are brought in and taught and just provide resources, education to patients, and also just to help answer questions. Through attending those meetings, maybe you can also get in to see an MPN expert. So I would strongly encourage the use of these foundations and these support groups because these are people, that they’re not in the clinic setting day-to-day.

They may be a patient themself who has had MPN for a long time, but now they’re overseeing and heading up the support group. Sometimes it’s a family member of a patient who’s now overseeing and heading up the support group. Additionally, there are pharmacists who are well-versed in MPNs and the medications and can guide and direct exactly where to go to get help when it comes to financial assistance for treatment. And then, of course, nurses. Nurses are just such a key player here that they take the time to listen and to educate and to answer questions or direct.

And so my activation tip would be to one, look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help. 


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How Can Underrepresented MPN Communities Access Support?

How Can Underrepresented MPN Communities Access Support? from Patient Empowerment Network on Vimeo.

What are some ways for underrepresented myeloproliferative neoplasm (MPN) communities to access support? Expert Natasha Johnson shares ways that she’s helped inform patients about resources and clinical  trial information to help bridge gaps in care.

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 “…try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible.”

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How Can MPN Patient Advocacy Groups Help Patients

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Transcript:

Natasha Johnson:

From a nursing perspective, there are several gaps that affect our underrepresented communities. And unfortunately, these are patients who are very late diagnosed, maybe incorrectly diagnosed, and even underdiagnosed because there is difficulty with access to care and then getting treatment. And here’s where it’s important that as providers, as nurses, we’re educating the community. We’re educating the public health department on these diseases to help pick up for that. We’re making people and patients aware of these diseases to help pick up on that. And there are many resources that are available online for free.

There are also local support groups for patients with MPNs and their caregivers that you can join in-person or on Zoom that provide just education resources on new trials that are out there or new treatments that are out there. Patients themselves can research clinical trials by looking at clinicaltrials.gov and see what’s out there and contact the academic center that’s performing those trials. There’s free information online that provides recorded sessions from conferences or speakers or speaking done by the MPN experts that you can just look to and get to easily to help understand the disease, knowing the symptoms, and then guiding treatment.

If you belong to an underrepresented community, my activation tip would be to try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible. 


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Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions? from Patient Empowerment Network on Vimeo.

Have myeloproliferative neoplasm (MPN) disparities been addressed by institutions? Expert Dr. Idoroenyi Amanam from City of Hope explains MPN disparities that need to be improved, how institutions can collaborate on improvements, and how patients can advocate to lessen disparities.

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“…we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?”

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Transcript:

Lisa Hatfield:

So, Dr. Amanam, what can institutions do to better address racial and socioeconomic disparities in MPNs? And what has changed? Have there been improvements in that?

Dr. Indoroenyi Amanam:

Yeah, I think that along the lines of improving access to care and understanding what are the socioeconomic reasons for poor outcomes in specific groups, I do believe that from a scientific perspective, we have to understand why some specific groups have poor outcomes. So what are the biologic differences? And I do believe that centers should work together to get this understanding especially since MPNs are a rare disease. And each institution may not have the numbers to really be able to answer those questions.  So my activation tip for this question is, we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?


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What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like? from Patient Empowerment Network on Vimeo.

What does the future of myeloproliferative neoplasm (MPN) care look like for patients? Expert Dr. Idoroenyi Amanam from City of Hope explains how MPN treatments have changed in recent decades, symptoms that are relieved with treatments, and how treatments of the future may help patients.

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Are There Any MPN Disparities in Subtypes and Genetics?

Transcript:

Lisa Hatfield:

Dr. Amanam, what promising treatments are available for newly diagnosed MPN patients, and what questions should patients be asking? They come into your office scared to death and not even knowing what to ask. Do you have any suggestions for what those patients should be asking when they go in as a newly diagnosed patient?

Dr. Indoroenyi Amanam:

Right, right. Twenty years ago, we really didn’t have any therapies for most MPN patients, aside from performing phlebotomy and using non-specific therapies to try to help control their counts and therefore reduce their risk of clotting and stroke. We are getting to a point which is really exciting, where we actually are treating the underlying disease, meaning that the cells that are causing this cancer, we have been able to identify targets that will help eradicate those cells and, therefore, get rid of the cancer. And so we’re getting there. Unfortunately, we still are not there yet, and so when we look at the FDA-approved drugs in this space, really, they help control symptoms, they help control some of the associated complications with the disease, mainly when your spleen’s enlarged, and that potentially may affect your quality of life, mainly your nutritional status and your physical status, and so we do have drugs that are able to do that, that are FDA-approved right now.

I think in the next three to five years, we’re going to have drugs that are going to actually be able to treat the underlying disease before it gets to a point where you may need more aggressive therapy. Currently, the only defined curative therapy that we have, when I say defined, meaning that we have multiple studies that have shown that that’s the case, is bone marrow transplant. I’m a bone marrow transplanter, I do treat some of my MPN patients with bone marrow transplant to get rid of the underlying…those underlying cells that are driving this disease. But that’s a very intense therapy and it has its own associated complications. But we are…will be having other drugs that potentially we would be able to offer that are not as intense as bone marrow transplant.

And those include immunotherapy, other drugs that can target the signals that drive these cells to divide and multiply. Also there are within the bone marrow for patients that have myelofibrosis, which is one of the MPNs, we will be able to target the environment that allows for these cells to persist and grow. And so it’s exciting where we’re going, and I think the questions that as a patient that I would ask are, because of the fact that we only have few FDA-approved therapies, are there any clinical trials that are able to target the underlying disease as opposed to just treating the symptoms? I think that’s very important for the patients to ask, especially in this space now.


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How Is MPN Care Influenced by Technology (AI, CRISPR)?

How Is MPN Care Influenced by Technology (AI, CRISPR)? from Patient Empowerment Network on Vimeo.

How do CRISPR and artificial intelligence (AI) influence MPN care? Watch as experts Dr. Joseph Sirintrapun and Dr. Jeanne Palmer share their perspectives on how CRISPR and AI can impact MPN patient care and explain situations where AI performs above and below healthcare professionals.

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Transcript:

Lisa Hatfield:

So in addition to the telemedicine technology, there are other types of technology that are influencing cancer care. Can you speak to some of those technologies? I know I’ve always been really interested in the CRISPR technology, which I don’t hear about as much anymore. Artificial intelligence, my oldest daughter is graduating from college this year. That’s what she’s studying. So can you touch on some of those technologies and how those are continuing to evolve also?

Dr. Sirintrapun:

Oh yeah, there’s a lot. So maybe as a disclaimer also, in addition to being an informaticist, I’m a pathologist. So it’s a great honor to speak in front of patients because many patients may not necessarily know whenever you get a diagnosis, there’s a pathologist who made the diagnosis on a glass slide through a lab test. So that’s my path as a pathologist. So a lot of my technology mindset is in terms of diagnostic. So how do you make the diagnosis better? And you mentioned about…well, I mean, we’ll start with CRISPR. CRISPR is not necessarily in the diagnostic front, but it’s a very exciting thing, especially for those tumors that have genetics. One of the simple genetics. You misplace one gene here, and all of a sudden it just alters the way one protein goes, and it leads to a disease, a cancer. And if you’re able to surgically or genetically microsurgery you can imagine the implications and the transformation for that.

We’re already looking at it with hereditary diseases like Huntington’s and some of the different blood disorders out there, which have like single genes or maybe a couple that you can just sort of pick out there. It’s still early. And that’s maybe the reason why you haven’t heard the technologies there that can do it. But how to deliver it, how to do the microsurgery. You can have the scalpel, but somebody has to hold the scalpel and how to do that in terms of what type of nanotechnology is out there, all these different things. But CRISPR is very exciting. I do expect over the next, definitely in the next couple of decades, you’ll see something, some brilliant application coming out of that.

Now you mentioned AI, that’s definitely down my wheelhouse because I implement a lot of…I see a lot of AI and I try to figure out different ways to implement the AI into healthcare. Because there’s tons of AI out there, but the idea is to basically use the right AI at the right time with the right person using it and for the right problem. And there’s a lot of rights in there and it sounds simple, but you have to keep in mind that in the AI world, we sort of separate AI into like general AI and narrow AI. General AI is kind of the, is what some people term the singularity. Like it knows everything. It can read your mind. You can switch the setting of whatever it is. It can write poetry in one setting, play the piano in another. There really is no such thing.

So if you hear ChatGPT, if you ask it to play the piano, it’s not quite applied for that. It’s really for language. And I try to illustrate that point because that…all these AI currently that’s out there is still in a narrow AI. It doesn’t do what a person does. As people, we can switch. We can task switch. We may not beat the robot, but we can certainly task, if the setting changes, we can adjust. And that’s the power with our intelligence. We’re generalized. While most AI is narrow, but very good. They can be…obviously, when IBM Watson beat everybody at Jeopardy, and now you hear ChatGPT beat people in passing the boards. So a lot of med students are going, oh my gosh. Keep in mind that it’s narrow. I mean, this is what the robot is really good at. They’re very good at facts. They’re good at other things. And you can use that. You can, but they’re not going to be able to task switch.

And they’re not going to be able to know when they need to deploy the right situation. Remember, they’re narrow. So they’re not going to know when you change a situation. It’s not going to know when to switch. That’s the job of a physician, maybe the patient. And it’s my job as kind of the engineer or an informaticist to figure out when those come in. When should it trigger at the right time? When to make sure that people don’t misuse it at the wrong time and deploy the right problem to the right AI. And so, for instance, as a pathologist, one of the big hottest things that we have right now is prostate biopsy. I deal with male cancer. So I deal a lot with prostate. But the AI is pretty good at actually even, I would argue, probably getting better at catching cancer in a small prostate biopsy than humans are. There’s small things that maybe, for whatever reason, human factors being tired, the AI can actually catch it quicker.

It might overflag. It might catch things that are not necessarily cancer. But it will catch it. It will catch it. And it can be very helpful. Because you can imagine as humans tire, they can use that to screen. It may not be perfect at diagnosing, but it can screen. And at least it won’t miss anything. And then the human, the pathologist who comes in, can go and say, I can confirm that that’s cancer or not. So you save a lot of mental power, mental energy in terms of things. And this is an application of AI helping providers, and I can see in the future even patients sort of answer questions that would have been very laborious, tedious. This goes back to the automation theme that we had earlier. How do we make things easier? How do we decrease the friction? I sort of illustrated a case where they had friction points and tiredness and things like that. And so these are things that are on the horizon.

And I think we’ll learn a lot in the next decade or so. You’ll see a lot pop up. You’ll probably see some mistakes too, people overusing it or being in the wrong situation. But that’s the way medicine works. Medicine works through some trial and error. You make your best guess. You have experts. But in the end, there’s a lot of unforeseen things. But you learn a lot along the way. And you learn when to use it. And eventually, you reach this equally important point where everything works very well. It’s part of the workflow. It’s just part of…you just expect it. It’s just when you go to care, you just expect that there is a human overseeing some AI that’s making sure that you’ve got the right diagnosis that nothing’s left out, nothing’s omitted, and you can trust it. That’s kind of the place you eventually end up being.

Lisa Hatfield:

Well, and you hit right on something that I think a lot of people worry about is how can we trust AI and all of the ethics surrounding that? Can we really trust AI? As a patient, I’m fascinated by that. And I know that the Cancer Moonshot Program has directed some funds to AI and cancer research. I look forward to the day when there’s a bridging of that gap between research and then clinical practice with humans involved in a lot of the decision-making along the way also. I’m not sure that we can ever move away from that. But that was a great overview of technology. I hope it continues to evolve. I hope what I’ve seen, what you talked about, you work more in solid tumors. I have a hematologic cancer myself. But I do see that there is some AI being used in earlier screening and also in the identifying of different genetic mutations within those cancers. So I look forward to that continuing to evolve.  

Dr. Sirintrapun:

That reminds me, too, and I left that part out. Some of these technologies… I’m sorry I left that out, but genomics has become a big thing over the last decade because of the Cancer Genome Atlas and other things that actually allowed us to map the genome. But along that front, we have technologies that can monitor progression. So we can at the cellular level. If you’re actually circulating cell-free DNA as a technology that’s out there. Where if you can implement it correctly, you can actually follow the patients just through blood without anything invasive. And it’s much better than any imaging study out there. So there are technologies that are evolving on this. And because of all the progress we’ve made over the last 10 years, you can see that being incorporated in a clinical trial where you can monitor patients much better. You can intervene faster and more effectively and all those other things like that. And thanks for reminding me about that. I forgot to mention cell-free DNA is another one that I’m very excited about, still early. 

Lisa Hatfield:

Yeah. Well, thanks for that information. Dr. Palmer, do you have anything to add to this informatics description or discussion?

Dr. Palmer:

Well, I think there’s a couple of things about the technology component of it. I know it was several years back, CRISPR, when it first came about. It’s a brilliant technology. Everyone got very excited. Okay, if you look at a lot of the myeloproliferative neoplasms, there’s three driver mutations that are really felt to contribute strongly to the development and the ongoing nature of the disease. Everyone said, oh, I can go in and if you take out that gene and replace it with the new one, I can fix it. I think that where the role of CRISPR right now is, is it’s doing amazing things to help us understand the biology of the disease.

I think in terms of treating a lot of the malignancies, they’re so genetically complex that even though we say, okay, well, you have, for example, a JAK2-positive essential thrombocythemia, which is JAK2 is one of the driver mutations and essential thrombocythemia is too many platelets. Unfortunately, I probably can’t go in there and get all the JAK2 mutations in the blood system to replace them. Now, where it is making huge strides is in things like sickle cell disease and thalassemia, where there is one gene that is a problem. And even if you only replace it in 50 percent of the cells, you can really drastically change somebody’s life. So I think that it is used in certain situations and is absolutely astounding and amazing. I think it’s utility and completely eradicating cancer is going to be something that is going to take a long time to come about. But I do acknowledge that it’s making enormous strides in understanding how everything can work, because you can quickly remove something, replace it with something else, and really understand what the function of that mutation or that gene happens to be. In terms of the artificial intelligence, I’m looking forward to seeing how it can be used.

I think it’s right. You try to find, how can I come up with the right answer? And once you think, oh, this should be easy, I should be able to look at somebody’s blood counts over the course of a year and be able to predict something. But to actually be able to do that, I think, is going to take a lot more thought. So it is something that I’m hopeful that we can all start to utilize more. I think the last thing is, is some of these really fancy ways of detecting minute amounts of diseases. I think circulating DNA, which I frankly don’t know a lot about, because I don’t treat a lot of solid tumors. But also, when I look at just bone marrow disorders, like acute leukemias, we often look for something called minimal residual disease, which is this below the microscopic level. You’re looking at like one cell out of 0.001% of the cells.

And honestly, we don’t really know how to deal with that. And I think sometimes it ends up providing more anxiety, because you have otherwise a disease that you would say, under all historical purposes, you’re in remission, this is great. And then you have this little amount of disease. And sometimes it’s good, because it can help us determine the next steps of therapy in a more effective way. But sometimes it just creates stress, and we don’t truly know the actual meaning of it.


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How Will Telemedicine Continue to Evolve?

How Will Telemedicine Continue to Evolve? from Patient Empowerment Network on Vimeo.

How will the use of telemedicine continue to evolve? Watch as expert  Dr. Joseph Sirintrapun explains telemedicine benefits and expansion during the COViD-19 public health emergency and the potential for telemedicine evolution in the future.

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Transcript:

Lisa Hatfield:

Can you give a brief overview from your perspective, how telemedicine has evolved and continues to evolve and how you think it might evolve going forward? 

Dr. Sirintrapun:

Yeah, I think I like pulling out these old sayings and I think Winston Churchill was credited with it even though I don’t think he said it, but never let a good crisis go to waste. You probably heard that during COVID, and COVID really blew open the door for telemedicine. I think because we just had to, there was no choice behind that. And thankfully, people…organizations, people recognized it. And I remember in March, March 2020, the public health emergency was declared and a lot of different things that were barriers and a lot of them were regulatory. They were opened up so that it can enable reimbursements, all these different things that factor in. And being able to leverage the technologies, because keep in mind with providers, I knew providers that didn’t know how to use Zoom and other technologies. And because of COVID, they were forced, and they found out, “Hey, it’s not that bad.” But if I were to do that before the pandemic, they’d be like, “Well, why should I? We’ll just show up in this conference room. We’ll just be there at six o’clock in the morning.

So it opens people’s minds. And I think that really helped. I don’t think that Genie’s going back into the bottle, not at least completely. I think we’re going to figure different ways to leverage those technologies moving forward. So in terms of telemedicine moving forward, some of the things I’d like to see and hence I think this is maybe one of the reasons why I’m here, is like how do we enable clinical trials to embrace the telemedicine model? Because clinical trials till now historically has been kind of a physical model. You have to go to some ivory tower, some centralized place and that really limits down, the patients can do it. There’s access problems. Even if you had the richest study in the world, you had to fly people from all over the world. You can imagine that just drains the budget. There’s just all these different things there. And when you think of the way clinical trials are conducted, it didn’t really take into account telemedicine visits.

At my institution Memorial Sloan Kettering, we developed an entire ecosystem of telemedicine tools to actually try to encompass the patient experience as close as we could. Because the experience, it can never be completely duplicated, but you can do certain things definitely through telemedicine. We tried to do our best to do it so it’s easier for patients, the nurse coordinators as well as the providers to use that. And clinical trials, they’re moving towards it. They’re acknowledging the issue and they’re rethinking the ways to do it. How can we enable it so that we can decrease the chasm between the patient and being able to enroll in a clinical trial? So in a nutshell, that’s the way things are going. We’re not there yet, but we’re definitely thinking about it. It’s definitely a discussion. I think the future will see a much more clinically- and a telemedicine-enabled clinical trial framework.


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What Does Informatics Mean for Cancer Care?

What Does Informatics Mean for Cancer Care? from Patient Empowerment Network on Vimeo

What kind of impact can informatics have on cancer care? Watch as expert Dr. Joseph Sirintrapun explains the components of informatics and the benefits they provide in care of cancer patients.

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Transcript:

Lisa Hatfield:

So, Dr. Sirintrapun, as far as informatics goes, can you give us the layperson or a patient-friendly version of what informatics is and what it means for cancer care?

Dr. Sirintrapun:

I really appreciate Dr. Palmer giving the segue for the informatic system. So this is…let me start with maybe when I explain to colleagues and other people about what informatics is. When you think of informatics, you think of three pillars, and we always…I almost have it down like a parrot. So it’s people, processes, and technology. And people always think it’s the technology, but it’s also people and processes, and that’s always been…whenever you see informatics, that’s the three pillars, but I wanted to add one more that Dr. Palmer also mentioned is data and information. You incorporate all those, so imagine all the four pillars coming together to enable the practice of medicine care and at a very high level, what I like to think of informatics is, it’s the science of bridging the gap, decreasing the chasm between the right caregiver to the patient who needs it. Because there are chasms everywhere, in terms of logistics, space, physicality, you have to travel five states to get with a rare tumor.

Those are chasms there. And I see informatics as bringing all those different pillars together. How do we do it so that the chasm is decreased? Or if it’s not a chasm, decreasing the friction, decreasing the burden between making these things work, making things more efficient. So I think I was hearing a little bit earlier about how can we automate things? As Dr. Palmer mentioned before, data, data abstraction data, being able to pull data from these gigantic enormous resources, it’s tough. And it’s not like we can hire the entire high school student population on their summer internship to go and read through these notes. And there’s not enough money, there’s not enough knowledge. And we need to find different ways that we can use automation, AI, or other things like that to do it.

And this is where informatics kind of delves in. How do we apply all these different things so that people can use it, because you never can forget about people. It works in the processes that take place and it’s the right technology. Because sometimes technology, it’s a great technology, but it’s not ready for certain things. I see a lot of technology kind of ahead of its time. It’s basically a tool in search of a problem and people try to stick it somewhere where it doesn’t fit. So it’s a lot of that. And as you can tell, I’m pretty excited about it because that in a nutshell gives you a feel of what informatics is all about, so.


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How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?

How Can I Get the Best Myeloproliferative Neoplasm (MPN) Care? from Patient Empowerment Network on Vimeo.

 There are many exciting developments in the myeloproliferative neoplasms (MPNs) research pipeline, but how can patients get the best possible MPN care? Internationally respected MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in London shares information about research updates, treatment strategies, clinical trials, and how to achieve patient-centered care for you or your loved one.

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Transcript:

Dr. Nicole Rochester:

Hello and welcome. My name is Dr. Nicole Rochester, I’m a pediatrician and a professional health advocate, and your host for today’s Patient Empowerment Network program. We are thrilled that you have decided to tune in. With so many exciting developments in the research pipeline from myeloproliferative neoplasms or MPNs. We’re going to answer several important questions during today’s program, how can you as a patient access the best possible MPN care? Will there be alternative treatment strategies for MPN patients who have failed previous therapies? Should you consider a clinical trial as a path to enhancing your care? Whether you’re living with polycythemia vera, essential thrombocythemia or myelofibrosis, we have so much to unpack and we are joined by world-renowned and highly respected MPN expert, Dr. Claire Harrison. Thank you so much for joining us, Dr. Harrison, it’s an honor and a privilege to join with you.

Dr. Claire Harrison:

It’s a great pleasure and it’s a privilege to join you as well.

Dr. Nicole Rochester:

Following this program, you will receive a survey and we’d be delighted if you take some time to provide your feedback that helps inform future MPN programs that we produce. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team to determine what is best for you. Now, let’s dive right into this very important topic, how can you get the best myeloproliferative neoplasm care. 

Dr. Harrison, we know that the treatment landscape for MPN is rapidly changing and keeping up with the pace of the developments can be challenging both for healthcare professionals and certainly for patients and their families, so I was wondering if you can give us a general overview of the treatment landscape and maybe highlight anything that’s new and in development that you think would be helpful for the audience.

Dr. Claire Harrison:

Well, sure, I think this is obviously really interesting, very important. It’s a fast-moving field. And one of the first changes actually completely hot off the press is a brand new diagnostic criteria that has been produced by two separate groups that are shortly about to be published, kind of just seeing pre-published and those of us that have been privileged to be involved, have seen them. So that’s gonna really focus the mind of clinicians on how do we achieve the diagnosis, and that’s the first thing that’s really important, get an accurate diagnosis, don’t just accept well, you’ve got an MPN, actually, it’s really important to know what type you’ve got. 

Maybe as much do you tell as possible in terms of the genetic mutation or change that underlies the disease, because that is increasingly important in what we call prognostication, understanding what the risk of events happening due to the disease actually is. When we make a diagnosis, we sometimes can’t be accurate and we might have to go back and revisit them, so some patients don’t get a PV, ET or MF diagnosis, they might get an MPN unclassified. That’s okay, but it’s important to keep revisiting that.

Once we’ve made a diagnosis, then it’s really important to think about what the risk is to the patient, and we’ve had some changes to our risk classifications recently, right from the ET end of the spectrum where we’re thinking more and more actually, those patients who are under the age of 60 with a lower count and the CALR mutation, do we even need to give you aspirin because we might be increasing the risk of bleeding. 

To the other end of the spectrum for patients with myelofibrosis, a more aggressive disease, we want to know more about your mutational profile, so we’re doing more powerful genomic tests and assessing them, your prognosis, and then what the features of your disease are that need treatment. And there are lots of changes, which I think we’ll get into later in our conversation here and lots of new options, which are really important, I just also don’t to leave this segment without saying to all of you who are listening, it’s important that you understand your disease, it’s important that you understand the diagnosis, prognosis, etcetera, and you get the best care.

But that’s maybe not enough, you need to know that you’re taking good care of you, and that’s something that’s really important to all of us, so you need to know that you’re managing your vascular risk don’t just think about your blood. Think about the fact that you know if you’re smoking, quit smoking, if you’re drinking too much, cut it down, if you’re not walking enough,  walk more, lose weight. The majority of patients with MPN actually have a problem with a blood clot, not a further complication of their disease, so maybe we’ll stop there and then we can dive in a bit more deeply

Dr. Nicole Rochester:

Thank you, I appreciate you pointing out the changes with the diagnosis. I’m really excited to learn more about that, and also pointing out the importance of self-care and some of the other risk factors that individuals with MPN can mitigate. So I think that’s extremely important. Can you share a little about what’s in the robust pipeline of potential therapies for patients with MPN, what is it that you’re excited about? And is the future bright in this area?

Dr. Claire Harrison:

I think the future is really bright from the point of view of de-escalating treatment as well as newer treatment, so I think it’s important to point that because all treatments have potential complications inside of it, so as we understand that some of these conditions may have very low risk for patients, it’s important to understand that, and de-intensify, I call that calreticulin (post ET?), I would also call out ET, essential thrombocythemia, which lacks a known driver mutation, so-called triple-negative ET, emerging data suggests that may have very low risk for patients, but what you all want to hear about, of course, is what’s new treatment-wise. So I think just to call out, I’m really excited that there will be a new trial this year for ET patients with Bomedemstat, which is an LSD-1 inhibitor, new target, new molecule. We’ve been testing it in myelofibrosis and we’ve tested it now in a bunch of patients with ET, and it seems to be very efficiently reducing the platelet count not affecting hemoglobin and patients appear to get a good benefit with regard to fatigue, which we know is the number one symptom for patients with MPN, so I’m excited about that because it’s been a long time since we’ve had a new treatment for patients with ET. And then for patients with PV, increasingly across the globe, the availability of this newer formulation of interferon, Besremi is becoming more available and the latest data with that agent suggests that it may be superior to standard therapy such as hydroxyurea, hydroxycarbamide in terms of clotting, et cetera, is really important.

Interestingly, and we may both have to think back to our med school days on this, we’ve been targeting the iron pathway in for patients with PV. So I always tell my patients with PV, do not let anyone give you iron tablets without speaking to one of our team because that’s like putting oxygen on the fire, it’s like feeding the red cell production. So there is a new agent called Rusfertide PTG-300, which targets the iron pathway and allows iron to build up in the body, but it doesn’t allow it to get to the bone marrow and so, this is a new treatment for PV patients, which might reduce the need for iron removal by phlebotomy or venesection, and has been also shown to give symptomatic benefit, and then of course, there’s a bunch of new treatments for patients with myelofibrosis, that’s probably the busiest part of the portfolio at the moment. 

We’ve just seen positive data with me Momelotinib, which is one of the fourth JAK inhibitors, very strong data from the momentum study, good results in patients even with low platelet counts down to 25, and then I’m really excited to see strong data coming with Navitoclax and Pelabresib, which are other agents targeted at are the pathways in myelofibrosis and then finally, in Denmark, they’ve been looking at vaccination strategies, and I know my patients are really interested in vaccination and (inaudible). I don’t have anything new to say (inaudible), but I do have something new to say on vaccination.

So in Denmark, they’ve been looking at producing a vaccination against the calreticulin mutation Nicole, because it’s expressed on the surface of the blood cells, so antibodies can find it. So this is ongoing, no positive result as yet, but it’s still ongoing and there are newer taking off with regards to vaccination structures, and I think that’s really exciting.

Dr. Nicole Rochester:

Wow, there is a lot on the horizon for MPN patients. That is extremely exciting, Dr. Harrison, how can patients best keep up with the new treatments and communicate with their doctors in a way that makes sure that they have access to these new therapies?

Dr. Claire Harrison:

Well, I think patient advocacy groups are really important here, and use of social media and the internet, you’re only a few clicks away from updated data, programs like these, but you also have to trust your team and trust your doctor. We all have to keep up to date. That is a professional requirement, and we also are all networked, so I’d probably get 10-15 emails a day from colleagues saying, Hi Claire, can I talk to you about this? There was an email just the other day about a patient in Washington, actually a very young child, we are all connected. 

We all want the best for our patients. But do you remember that you can contribute as a patient to advance this in your field, and I know many patients are really interested in this, if you are asked to submitting a blood sample, giving permission for us to use your data. So if we can touch maybe on the field of real world data and real-world data collection here would be good, so what about the real world data? What does that mean? And so this is becoming a really important way that’s recognized by the FDA and other approval agencies in the world, so in Europe, we have EMEA for example, and in the UK, we have NHRA as a way of collecting data on agents, so once they are approved, we collect data with regard to how the patients do. 

We’ve traditionally done this, but increasingly, as we use electronic data for our patients, we’re more able to collect real-world data, how does my patient who is with myelofibrosis on Ruxolitinib in my clinic inside East London do. So if we can pull that data, we learn a lot more about how these agents are working in patients outside of clinical trial, so you will be contributing if you allow us to collect that kind of data, we discovered JAK2 mutations, CALR mutations, etcetera from samples collected from patients and data. If you want to be part of a clinical trial, then by all means, ask your healthcare team, many MPN centers have lists of trials, and you can always look at clinicaltrials.gov, but boy you throw up a lot of different options when you search in that… On that website.

Dr. Nicole Rochester:

Thank you. I think it’s important to talk about real-world data because in this day and age, many of us are very protective about our personal health information and we should be, but as you stated, having access to that data is really a key way to advance the science and technology in the treatment of some of these conditions, so I really appreciate you sharing that.

Dr. Claire Harrison:

I think just to point out, and I’m sure the audience is acutely aware of what we learn about COVID? We learned an awful lot about COVID from real-world data from all you MPN patients who gave samples, who told us about how you did with COVID, that’s how we learned about what happened to patients during covid with MPN, how they responded to vaccination, etcetera. It’s really powerful. And your data will be anonymized, it won’t be linked back to you, Nicole Rochester, or me, Claire Harrison it will be completely anonymous.

Dr. Nicole Rochester:

Absolutely, thanks for clarifying that. I want to go back to treatment strategies, you’ve mentioned earlier about low-risk versus high-risk patients, and that some of those criteria are changing. How are treatment strategies changing for low-risk and high-risk patients with MPN?

Dr. Claire Harrison:

It’s complicated because we need to think across the entities, and we don’t have an answer to that for patients with MPN unclassified and we don’t actually have a good answer to that for this entity called pre-fibrotic myelofibrosis which does appear and is strongly recognized in the new diagnostic criteria, but for ET, for example, low-risk patients I mentioned triple negative, calreticulin, m-positive, young patients, platelets less than 1500, not too much changing their queries about aspirin or not, and then for PV patients, we haven’t really changed all kind of high-risk criteria and for both ET and PV, the questionnaire is, should we use the treatment above aspirin or above aspirin (inaudible). And for the most part, that would be hydroxycarbamide, hydroxyurea, which is the commonest treatment used worldwide or Interferon, and these are the right treatment for some patients and not the right treatment for other patients, so some patients can be very fixated on interferon is the absolute best, but there is no clear evidence of that, and there are some patients who interferon is not the right treatment, but low versus high risk becomes even more important for myelofibrosis patients.

And here, we’re thinking about using a risky strategy like transplantation for those patients who have higher risk disease, and we’re using, as I mentioned to you, these molecular markers and newer prognostic tools to stratify patients, and it is important to remember is a patient leave if someone puts your data into a prognostic tool and that comes up with five years, but it doesn’t mean to say five years on the dot your times up, that’s an average. 

And if we put your data into a slightly different tool, we might get something else. So for the most part, we make decisions like transplants,  we are learning more about transplantation and outcomes from that, and then in some countries, some treatments are used for patients who fall into intermediate or high-risk categories, and some clinical trials are based on that as well. I would want to say about myelofibrosis, and something I think I would really like to see changed, not changing yet, but changed, is that we should be able to intervene for patients with a low-risk disease. If my myelofibrosis patients have breast cancer, we would not be going there, then you’ve got low-risk disease we’ll put you on watch and wait, watch and wait is really hard for our patients, we know that I can see you nodding.

Dr. Claire Harrison:

You know that too, right? So if these were patients with breast cancer we would not say, We’ll just watch and wait. So I would really like to see in the next five to 10 years a treatment that we could use earlier in the disease course, but there is nothing at the moment, but we’re looking at that. The other thing we’re looking at, if we’ve got a minute or so is the different endpoint, so we’re trying to understand what does it mean if you’re a (?), so the amount of abnormal genes you’ve got goes down, the amount of bone marrow fibrosis you’ve got goes down. And again, this is something we’ll collect in a clinical trial, but also from real-world data.

Dr. Nicole Rochester:

Wonderful. Wow, thank you. What about for patients who have failed therapies, are there any treatment strategies for MPN patients who have failed traditional therapies?

Dr. Claire Harrison:

Yes, in fact, actually, that’s where we’re evaluating new therapies across all of these entities, so if you’re a PV or an ET patient and you failed a therapy, then this is where, for example, in ET, we would be looking at Bomedemstat or we’re looking at the bromodomain inhibitor Pelabresib, and there’ll be other agents that we’ll be looking at, or we might be looking at vaccination. And for MF patients that while there are a bunch of different therapies for patients who you have not tolerated or progressed through standard therapy. So actually, there’s a lot of options, some of them are already approved and some of them are in clinical trials.

Dr. Nicole Rochester:

And you mentioned clinical trials, and so I think this is a perfect opportunity to transition and start to talk more about clinical trials as a treatment option for NPM patients and really focusing on treatment access, what would you say are the unmet needs in access related to MPN and care, specifically as it relates to clinical trials, and what can we do to address those unmet needs?

Dr. Claire Harrison:

Well, I think there is a problem with rare diseases in terms of geographical access to trials, and we often find patients have to travel a long way. I know that’s true in North America as well as in Europe. And we’re very lucky in our geographical locations, but in some parts of the world, some companies or doing not open clinical trials, so I think there’s an access issue. I think also there is something about patients have to meet rigid entry criteria for clinical trials, and so oftentimes in myelofibrosis, for example, commonly patients who fail (?) have a lower platelet count, and that is often an exclusion criteria. Those criteria are there to try to get a uniform population of patients in a trial, but it can feel like you’re excluded as a patient, and it can feel very tough and for your health care team that we can’t include you in a clinical trial. We also have to remember that it is there for safety purposes, so if there is a lower limit for platelet count that’s often because the drug might affect platelet count. It is really important that we have a broad spectrum of trials available and that we try to increase the availability of trials for patients. 

I also want to say a word about inequality of access and thinking about accessing some different ethnicity, so often non-white and patients are under-represented in clinical trials, and I know that a focus in the UK and also in North America as well. And it is really important that patients have access to a clinical trial if they need it, and also that we understand how investigational products will work in people of different backgrounds. So for example, we know that probably Nicole, your blood count assuming it’s a healthy, normal blood count may well be different from mine for background, racial genetic differences, so drug metabolism might be different, so this is really important and we need to work hard as a community, the clinical community and the patient community to raise awareness and improve access for patients.

Dr. Nicole Rochester:

Well, as someone who does a lot of work in health equity, Dr. Harrison, I really appreciate you pointing that out. It’s certainly an issue here in the United States, as you mentioned, differential access to clinical trials, and we’ve learned that not only our patients, often not aware, but often the providers, at least here in the US, are not offering clinical trials as an option for patients from marginalized and minoritized communities. So I really appreciate you bringing that up. It’s said that clinical trials are tomorrow’s medicine today, and you’ve already kind of alluded to the importance of clinical trials as it relates to MPN. What would you say to an MPN patient who is on the fence or may be concerned or afraid of participating in a clinical trial?

Dr. Claire Harrison:

It’s right to be cautious and you know, careful because ultimately it’s a huge privilege as a clinician that involves patients in clinical trials that my patients trust me and trust my team to look after them with something that is experimental, but remember there are varying degrees of experimental most clinical trials are not first in man, you’re not a complete gene page, it may be a drug, for example, Levetoclax (?) is in clinical trials mainly for myelofibrosis also ET and PV but that is a drug that has been used for thousands of patients, for another indication so talk to your healthcare team, if you don’t find the answer from the primary person that you’re used to dealing with, find someone else, be linked to somebody you trust and that you have a good relationship with, take someone with you to the consultation, write down the questions I’m so sure you say this all the time, don’t you Nicole to the people that you talk to, but write down your questions, don’t be afraid to ask them again, there is no stupid question in this context, you will be given a 30-plus page booklet to read, and I lost count of the number of times, my patients go, yeah, I’ve got this or I trust you.

Actually, you know, you need to read it… We are experimenting on you, and you need to read that and understand. And you need to understand, what happens if I go on the control arm, will I be able to cross over? How many visits will I have, will, I have to pay for those visits, etcetera. It’s all really important, but ultimately the relationship with your healthcare provider is important and using an advocate (inaudible) is really important.

Dr. Nicole Rochester:

I agree, 100%. So important, these are things that I talk about all the time, so I really appreciate that you highlighted that, and just the importance of patients taking an active role in their medical care and also the trust that is required between the patient and their treating providers. So I really appreciate that. Do you have any examples, Dr. Harrison in your own practice of successes with MPN patients who have participated in clinical trials? 

Dr. Claire Harrison:

Oh yes, I think I started doing clinical trials, well golly a long time ago. I think my first clinical trial, we probably the records of written parchment to be honest, but we’ve still learned a lot from that, so that was an ET study. It was from that study we understood about the JAK2 mutation on and we understood how patients behave differently. I think probably the most gratifying thing for me was being involved in the JAK inhibitor studies in myelofibrosis and being involved in delivering Ruxolitinib and Jakafi to patients and seeing the benefits for those patients. 

Big things, you know, there are patients who are alive because they took part in that trial today, I think, but there are also patients for whom small things were also really important, so as a patient, that’s important to define what is the benefit you want to get. So one of my first patients, you haven’t been able to have a bath or a shower for years, because he had terrible what we call aquagenic pruritus itching induced by contact with water, we called him two days after he started Ruxolitinib and he was in tears, he could take… Or you can take it out.

These things are really important. Like myself, I can imagine not being able to dig it out, I would either be very tough for another patient, it was, Well, I looked really skinny because I’d lost loads of weight and I put weight on, and body image was really important as well, but then the small things like being able to be… participate more in family activities is really, really important too.

Dr. Nicole Rochester:

Wonderful, so what advice would you give for patients so that they can really take a proactive approach to their healthcare and feel more confident in talking about their concerns and communicating with their healthcare team, you’ve shared with us how important that is. Do you have maybe two or three specific tips or maybe questions that every MPN patient should ask their healthcare provider?

Dr. Claire Harrison:

I think the first thing to say is, in my personal view is you do not have to be under an MPN expert to get the best care. I know some people differ with regard to that, but these are chronic conditions, there are national and international guidelines, clinicians are connected. We all talk about patients over time, as we like to do that, we like to get the best for our patients, so a local center with a clinician who you trust, who you get on with… Where you can get there easily. You trust their team, you know their logistics work for you, maybe it’s a nurse who work who you get on with, well, who comes to the appointment with you, that is just as good as being under the best professor in the state, where you might not actually see them  when you turn up and go to the unit, so that’s really important, understanding your condition, and if you don’t understand being empowered to ask questions, and if you’re in a position where you can’t ask a question, something’s wrong. So don’t be afraid, take somebody with you, write it down. Sometimes it can be a mistake to do a troll on the internet, so I wouldn’t always encourage that because what’s on the internet is not always accurate, but go to a trusted website as the clinician… Where can I go to find out more information? Some patient advocacy groups run buddy systems that can also be very helpful and it can be very empowering to meet another patient with the same or similar condition, so I think those are all helpful tips from my perspective, also don’t expect to get all the answers all the time, it can be really tricky as a clinician, maybe you get a patient who comes with a big long list of questions, and say What is your top question that you really want answers to.

Dr. Nicole Rochester:

Those are awesome, awesome tips. I’m just gonna repeat a few of them, just to highlight, you mentioned prioritizing your concerns which is incredibly important, and acknowledging that the clinician doesn’t have unlimited time, and so really focusing on the things that concern you the most, you mentioned bringing a buddy to appointments, which is something I fully endorse, so that there’s someone else that’s taking notes or… It can be your eyes and ears during that appointment, things that you may have missed either because of anxiety or stress, and you mentioned writing things down, taking notes, even as the patient asking questions, which is so incredibly important, and really the way that I feel patients demonstrate their involvement in their disease and being an active member of the team, so I really, really appreciate those tips, Dr. Harrison, I think that you have given us so information, so much information about how to empower MPN patients and their families so that they can really get the best care at the outset. So it’s time to wrap things up, Dr. Harrison, I’d love to close with any closing thoughts that you have, any takeaway messages you’ve given us so many already, but if there’s anything else that you have not had the opportunity to share with the audience, I love for you to go ahead and do that now.

Specifically anything related to how they can advocate for themselves or any other important messages that you wanna leave the audience with.

Dr. Claire Harrison:

I think I would want the listeners to feel empowered and to feel very hopeful, this is the time where there’s a great change. We’ve been through a really difficult couple of years, but actually, we group together really well as a patient in a clinical community, and we’ve learned a lot, so trust your clinical team if you don’t trust them if there’s a problem. Move on. And don’t be afraid to do that, don’t be afraid to ask for another opinion, actually, we as clinicians like somebody else to give an opinion on our patients, that’s another thing we haven’t covered, and do connect with patient advocacy and keep up-to-date. Do you ask for a copy of your letter, don’t be afraid to ask for copies of your diagnostic information, you will properly outlive the relationship with your clinician. I will probably retire before my patients move on from my practice, so keep the information and understand it as much as you can.

Dr. Nicole Rochester:

Wonderful, thank you. So Dr. Harrison and you’ve just left us with a message of hope and a message of empowerment, and I think those two things are incredibly important, so I really appreciate you taking time with us today, and thank you so much for sharing your insights and your expertise. And I wanna thank you all for tuning in to this Patient Empowerment Network program. 

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Dr. Nicole Rochester:

So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which healthcare is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGrory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about…a lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a healthcare system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more…I mean I have this sign behind me it says, “Get comfortable being uncomfortable to talk about racism.” But I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk about, and that is a pathway to healing, which I think this country really could use. And so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful.

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Dr. Nicole Rochester:

If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to whole person care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the time, they just do a couple of tests and they’re like, “Oh well, we can’t find anything, so let’s just move along,” and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, “Okay, you know, well, we can’t find anything wrong, so just go.” And it’s like, “No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling.” And there are just so many different layers to just one, if you come in and say, “Oh, well, my hip hurts.” Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones…to kids, to spouses, there are so many different things on top of that, that’s more than just, you know, “Hey, you know like, I just need a prescription,” and you can go. There’s so much more conversation needs to be have then I really wish that a lot more healthcare providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing.

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Dr. Nicole Rochester:

We know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher. And what they found in this study is that they looked at prostate cancer cells from African American patients and white patients, and when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy. And so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Dr. Broderick Rodell:

So, these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness. And so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies. And so, the various structures that are in place are facilitating our conditioning and from our conditioning we…that our conditioning creates our perspective, the framework that we operate from, that’s determine…that’s going to determine how we relate to our experiences. And how we relate to our experiences can be gracefully, or it can be stressfully, just to put it in those two different terms, and so that stress that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address our familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that. And they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, “How can I change myself?”

I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension? Because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s going to suppress our immune system. It’s going to cause damage in our blood vessels, organs are not going to function optimally, and I think that we’re going to keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons, or social reasons. Then, of course, that’s going to get passed on from generation to generation, a sense of hyper-vigilance, a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s going to have a significant influence on how the body is capable of dealing with various illnesses – be it cancer, be it cardiovascular disease, or any other disease that’s associated with, or probably all disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s…no, simple relationship there. You can’t just say, “Stress causes cancer.” I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, “Okay, I need to work on how I relate to my experience,’ but also “How do I create favorable conditions in my internal system, in my body through the food, in through the exercise that I do, through the literature and I expose myself to, etcetera?”

How Can Cultural Competency Play a Role in Your Care?

How Can Cultural Competency Play a Role in Your Care? from Patient Empowerment Network on Vimeo.

Cultural competency, also known as cultural humility, can help provide better care. Dr. Nicole Rochester and Sasha Tanori discuss barriers to diagnosis and Sasha’s experience as a Mexican American patient in the healthcare system.

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Advice From Cancer Survivor to Better Whole Person Care

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

Sasha, from your perspective, and you mentioned you’re a Mexican American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area. Just to get my diagnosis, like I said, I had to leave out of my community to go get the community…to go get the diagnosis. Sorry. And when I did that, it was…a lot of it had to also do with your…for me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, “Oh, you’re exaggerating.” Or it would be like the typical [passive], “You’ve got to go and put some Vicks on it, and you’re fine,” type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a…like I said, I live in a…what’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans. If a white girl was to go to the hospital and say, “Hey, I’ve got bruises.” It’s like, “Okay, let’s do testing right away.” But I kept…and it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, “No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong.” And I wish that I would have advocated for myself a lot sooner. I wish that I would have taken my own problems more seriously because I didn’t…I didn’t think anything was wrong either. I just kept ignoring it, because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I needed it right away, it was now kept pushing it back on, “You need to lose weight,” or “You’re anemic,” or “You have this blood disorder, so take this medicine.’ Like nobody really took anything I was saying serious, because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican. That’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work, and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I’ve been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, “Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.”

What Is the Importance of Culturally Competent Care?

What Is the Importance of Culturally Competent Care? from Patient Empowerment Network on Vimeo.

Culturally competent care is another way to work toward health equity. Dr. Nicole Rochester and Aswita Tan-McGrory discuss barriers to providing culturally competent care and ways to address the issues.

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Advice From Cancer Survivor to Better Whole Person Care

How Can Cultural Competency Play a Role in Your Care?

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How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

We know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and have safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I want to move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture. But I want to talk about how those come together, this idea of being respectful and sensitive and aware of an individual’s culture and how that connects to some of the health inequities that we experience. So, Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, “Oh my God.” And not around just medical issues, they all align, right? If you don’t have housing, you’re going to have medical stress, like Broderick said. I’m just calm listening to you, so I’m going to guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage. And so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right? But you formalize it because it’s not happening, so now it becomes like a screening question. And I will just say that we’re very narrow-minded in our view. I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls. It said,  “Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits.” And I think the healthcare system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there. But I think just acknowledging that the person in front of you has different experiences based on language, education, gender, ability, sexual orientation…I don’t think that’s a bad thing. I think you just need to own it, we’re working on it. So I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so…I’m with you, Broderick. We don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care? from Patient Empowerment Network on Vimeo.

What is whole person care, and why is it important to address? Dr. Nicole Rochester, Dr. Broderick Rodell, Aswita Tan-McGrory, and Sasha Tanori discuss the factors that whole person care examines, obstacles of healthcare systems, and how to advocate for optimal care.

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Related Resources:

How Can Cultural Competency Play a Role in Your Care?

How Does Stress Correlate to Our Physical Ailments?

How Does Stress Correlate to Our Physical Ailments?


Transcript:

Dr. Nicole Rochester:

So let’s start with a definition of whole person care. Whole person care is defined as the patient center, optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve the coordination of care for patients, their well-being, and their health outcomes. So I’d like to start with you, Aswita, and I’d like to know your thoughts on whole person care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGrory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about…we have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication, or communication is sort of inconsistent between those pieces. And so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient…and I’m sure all of us have had our own experiences in healthcare where we are like, “They’re not talking to each other. Well, why does this doctor not talk to my primary care doctor? Aren’t they like logging into the same system?” And then if you go outside of your system, it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a physician and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGrory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you…and they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on. So I’m totally in agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, “We don’t know what’s wrong with you. Go home.” They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, “Oh, if you lose a couple of pounds, you’ll be fine.” And I show up at the hospital with bruises on my body and they’re like, “It’s because you’re overweight.” And I’m like, “That doesn’t really make a whole lot of sense.” So yeah, it was definitely difficult trying to find a good healthcare professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, “Well, it could be this blood disease, it could be this, it could be that.”  And they were like, “Oh well, is anyone in your family…you’re Mexican, is there anyone in your family who has this type of illness, do they have diabetes, or this or that?” And I was like, “No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me.” And finally, I think after two months or something of just going to doctors’ appointments, after doctors’ appointments, they finally were able to give me proper diagnosis. But it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half-Mexican. But a lot of people see that part of me first, and I think they automatically start being prejudiced, or they start judging you based on the way you look, the way you talk and stuff like that, so that way. It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border. So they just automatically…they’re like, “No,” it’s just straight up, “No.”

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story. What about you, Broderick? And you’re a naturopathic physician, you’re a wellness expert, so you probably fully…not probably you fully understand the importance of whole person care. I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician. And so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help. It doesn’t deny the various social conditions or structural issues there. It’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the Internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners. But I’ve also really emphasized what can I do to maximize my health, my well-being, what choices can I make in my life to make my life into a life with maximum wellness and well-being and minimal suffering? And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I want to say, I’m going to be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients. And if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick, the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body. And I know that that can be challenging. And some people feel like, “It’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting.” And it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit. And as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training. And it’s unfortunate that we kind of just see the body over here, and then the mind over here. And we know that we are all…this is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.