Tag Archive for: myeloproliferative neoplasm

Experts Share Best Practices for Telemedicine in MPN Care

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Experts Share Best Practices for Telemedicine in MPN Care from Patient Empowerment Network on Vimeo. 

What are some best practices for MPN care with telemedicine? Watch as expert Dr. Jeanne Palmer explains how telemedicine care can be adjusted for optimal care and hopes for the future of telemedicine and monitoring technologies.

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Transcript:

Lisa Hatfield:

So I think we’re going to talk just a little bit, we’re going to move on to talking about best practices for MPN patients and families using telemedicine. Dr. Palmer, we’ll just start with you and then talk to Dr. Sirintrapun about that. But what are the best practices for MPN patients utilizing telemedicine? And what are some of the newer technologies that we’ve even talked about today that are being explored that you’re most excited about?

Dr. Palmer:

Well, again, I think it’s hard to say the right way to use telemedicine. I think that, as much as automation and trying to come up with processes that are very standard is important, I think it is still a learning process. How long is it safe to do telemedicine? How many, if I’m the only provider seeing this person and there’s not somebody physically looking at them, am I doing a disadvantage? So like, what’s the safety realm in that? I mean, that is something that I know comes up and it comes up with a lot of physicians, like, “Well, I have to examine the patient, I have to eyeball the patient.” So trying to figure out that balance of making sure you’re providing good quality and safe care, but that you’re also allowing for people to have access to things they otherwise wouldn’t have access to.

And some of that is a matter of having good collaborations with providers in different places and the willingness of the local providers to work with one of us. And some of that’s just kind of saying, “Well, I’m going to try this.” And then after a while if you say, “Hey, this isn’t working well,” then you switch it. But I think a lot of this is something that you can’t prescribe. It is something that needs to be the level of comfort for the provider, the level of comfort for the local provider and the patient. And it’s not going to be the same for any two patients. There certainly is going to be some variability. I’m very excited about the ongoing telemedicine and our ability to utilize it. I’m really hoping that even after the public health emergency, some of the barriers to being able to provide telemedicine outside of your own state will not be a problem. And I think each institution’s handling it a little bit differently.

So that’s something I’m excited for and there’s probably going to be a lot more that I can’t even begin to think about that’s going to come up in terms of ways that people can, like there’s handheld imaging machines and stuff like that. Is there going to be a way that we can actually have patients apply it? So, for example, I like to feel spleens in patients who have myeloproliferative diseases because they’re often enlarged. Is there going to be a way that there’s some type of equipment or some type of material that can do a spleen exam without me actually having to physically see the patient and lay hands on them? This is something that I probably, people are thinking about who are a lot smarter than me. And I’m looking forward to something like that being developed. But that’s what I’m hopeful is that we get to the point where I can feel like I’m providing really top quality care to people who could be anywhere in the United States or even honestly the world. 

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What Are Risks and Rewards of Telemedicine in MPN Care?

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What Are Risks and Rewards of Telemedicine in MPN Care? from Patient Empowerment Network on Vimeo. 

How can telemedicine provide benefits and risks in MPN care? Watch as experts Dr. Joseph Sirintrapun and Dr. Jeanne Palmer explain benefits and risks of telemedicine and some of the logistics and lab test procedures and analysis.

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 Experts Share Best Practices for Telemedicine in MPN Care

Transcript:

Lisa Hatfield:

Okay. So, Dr. Sirintrapun, the importance of connecting to specialized care when living with a rare cancer is so paramount. But with anything comes risk and rewards. What are the risks and rewards of telemedicine and maybe even some of the limitations? You both touched on that a little bit. But if you can talk about that a little bit, that would be great.

Dr. Sirintrapun:

Yeah, I’m so glad that Dr. Palmer actually illustrated to everybody, including myself, kind of how the processes work and if you had a trial, particularly with monitoring, and getting the right tests. So being a pathologist, that’s the other hat, I look at glass slides, but I also handle a lot of tests in particular, is looking at them. And in Memorial we do those complex humongous genome panels, it’s actually become much more commonplace to have 500 genes. And as Dr. Palmer had alluded to, sometimes you don’t know out of the 500, which are really meaningful, which are not. But out of that, you do know with some of them. I see it like the initial diagnosis, at least with technology, like the complex testing being done, still centered. It’s hard to outsource that to locally.

But in terms of convenience, I can see a future where a lot of these tests can be done more closer to the patient, where they’re simpler, there’s more automation. Somebody who might be a lab tech or nurse practitioner might, the instrument might be simple enough to press a button and you’ll get your results. And that’ll be just the right amount of genomes to monitor. Now going back to rare diseases and such, it depends on the rare disease. Because rare diseases have been kind of the classic paradigm for a clinical trial where you have to go to a centralized center because a lot of times the way rare diseases work is that they’re, at least in pathology, there centrally to an expert. Because there’s only one person that’s ever looked at it in the entire world and nobody else really knows. And you end up sending it to that guru.

And so the problem with that is that somebody has to know from the outside, “Hey, I think it’s this, I should send it to that person.” So you have, you already have friction and a gap right there. And you have the logistics of it just, okay, once it’s there and you get the diagnosis, what happens next? Can the patient who might be living from wherever be able to go and get enrolled in that trial? So you have all these different barriers that I alluded to before. So the advantage of the telemedicine is that you basically might have diminished the gap. You can bring that expert in terms of consultation to the patient who lives very far away. Now, going back to all the logistics about monitoring, if you had the right lab tests, and this is where the FDA comes in, and we don’t have time to go into the way lab tests are developed, but if the lab test is simple enough, you can do the monitoring more closer to the patient.

And in that way the clinical trial is much more enabling. They don’t have to fly somewhere, you have to go some…it all depends on how they can actually get the test to the right quality level and closer to the patient so that you can have the monitoring as more frequently and you don’t have the cost of actually having to ship either the patient or the sample elsewhere. So things that are changing, I’m hoping, because the technology’s there and it takes architects of clinical trials to rethink that. What’s the right technology now that we can apply it locally, so that we don’t have to do all this back and forth. And so that’s the type of thing. So going with the record, there’s lots of opportunity. I think the cautionary part would be is that tech, if you’re going to deploy something, let’s say near the patient, we call it point of care in lab testing, point of care, right?

Right, right near the patient. You have to make sure that lab test is quality, it’s actually good enough, like it met all the standards, and then you can trust the results. That’s the trick. And that’s where the cautionary part comes in. Are these things really good enough that anybody with a little experience can use it and that people can interpret the result and you can trust the result. That all these things are in place. I’m giving you the ins and outs with the way, when you want to deploy something, these are the different things you have to consider. But there’s a lot of potential as I mentioned. 

Lisa Hatfield:

Sure. Great. Dr. Palmer, do you have anything that you want to share or add to that? Risks, rewards, limitations for MPN patients about telemedicine?

Dr. Palmer:

So, I think that brought up a really good point. So when we look at these tests that you can order, I think there’s a lot of companies that do very reputable tests that are even sometimes utilized by some centers. And so at the first diagnosis, I think there’s the piece that what is going to help clinically based on the knowledge that we know, and that is some of these tests that actually can, are very good quality have somebody to be deployed, draw the blood, send it to wherever and do the test. Sometimes it’s good to be at the center itself where there’s actually labs and that increases the learning. I think that the architecture of the clinical trial which was a great way to put it, is going to be really important, because if I take a complete blood count, honestly, I mean, anyone can do a complete blood count and I can get the information that I really need to get out of it.

If we look at drug levels, that’s a far different animal is to make sure that these drug levels get drawn in the right way at the right time, sent to the right place. That can be a real challenge. So there are going to be different aspects of the clinical trial that can and cannot be done virtually and through outside resources. So I think that, that it’s certainly not all created equal. So there’s no way I can do the entirety of a clinical trial without physically having a patient at the center. However, on the other side of that coin, I think there’s probably a number of things, especially with like really routine visits where we’re not getting drug levels, we’re just checking a CBC, or a complete blood count or chemistries or something in the blood, that that can probably be done almost anywhere.

So it’s just going to take an extra layer of thought. I think that a lot of times you use what you know, so you say, “Well, this is how this clinical trial was run and they have to come in and they have to get an exam and they have to get a CBC and they have to get everything else.” I think that there’s going to be ways that we can alter that to really think what are the meaningful things we need? Like we don’t use every single solitary time point, What are the safety measures we need to make sure we capture? So it is going to require sort of a lot of thoughtful processing to figure out how to do that. The other thing to be cautious about is if you have the interpretation of the test.

So let’s say I send out a lab to one of the companies that does really extensive panels of genes, and then it goes back to their primary provider. They might look at that and go, “Well, geez, I don’t know what any of this actually means.” I mean, frankly, out of those 400 genes, there’s a number of them that I don’t even know how to interpret. I say, “Well, this is interesting, but these are the ones that I know are really critically important and can impact your, what I anticipate is going to happen to you. But some of these we don’t know yet.” I mean, I think that’s what we’re learning about. So doing these tests, sometimes getting these big panels can be confusing and frankly scary if you don’t have somebody there who is able to say, “Yes, these are the important ones. These are probably not that important. So it’s interesting that you have them, but we don’t need to worry about them right now.”

And so that’s really key, because otherwise you start to go to Dr. Google and, which is not anybody’s friend, and get yourself really terrified. So I think that that ability to put things into perspective is also, and have the ability to incorporate it into the education given and the treatment plan is really critical. So again, a hybrid model is really necessary for a lot of these to work well. And how that hybrid model works is going to be dependent on the disease type, the clinical trial in that situation. But I think that there’s ways to do it, and I personally in my own practice have created a set of rules that I’m like, “Okay, well, for this and this and this and for this you have to do that and I need to do this.” So I have certain things set up to make sure that I feel like I am providing safe care, but also being able to provide it virtually. 

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How Is Personalized Medicine in MPN Care Influenced by Telemedicine?

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How Is Personalized Medicine in MPN Care Influenced by Telemedicine? from Patient Empowerment Network on Vimeo. 

How is MPN personalized medicine impacted by telemedicine? Watch as expert Dr. Jeanne Palmer shares situations where personalized care can aid essential thrombocythemia, myelofibrosis, and polycythemia vera patients, how telemedicine can aid in care, and the value of specialized care.

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Transcript:

Dr. Palmer:

So I think one of the key…so when we look at treating different myeloproliferative neoplasms, you have to take what’s your goal of therapy. So for the ones like essential thrombocythemia, where you have too many platelets, or polycythemia vera, where there’s too many red cells. A lot of times what you’re doing there is you’re just saying, “Well, how can I predict whether you’re going to have a blood clot or something?” Because people can live, these can be fairly chronic diseases that with appropriate therapy, people can live a long time.

So a lot of that’s risk mitigation. Where I think a lot of the personalized aspect of it is coming in is probably in myelofibrosis, which is a disease where I view it as too much inflammation, scar tissue develops in the bone marrow, people could get a large spleen, high white blood cell count. A number of different manifestations. And in that, we’re learning more and more that in addition to the three driver mutations, the JAK2, the MPL, and the calreticulin, there’s probably a whole other group of mutations that can really be used to help us predict and try to take a look into the future to help guide them. And what is the timing for transplant? Should we be more aggressive as we’re getting more and more agents being evaluated and hopefully approved in the treatment of myeloproliferative diseases? Who are the people who should utilize these agents?

Because again, you don’t want to overtreat. And so I think that being able to hone in on these different mutations to be able to help us predict what we think will happen and maybe different treatment options that we would have, that’s going to be important. Now, one of the things that’s really exciting is that some of these companies that actually do this deep sequence, like looking at multiple, multiple genes, actually have mechanisms by which they will send somebody to a person’s house and then draw the blood and take it over and run it. And so I’ve actually had that done before, where somebody I saw via telemedicine, and we really wanted to get that information so I could appropriately advise on what I anticipated was going to happen in the course of the disease.

And we were able to actually get that information through using home care, saying, “I want this order to be done. The home care people went out, drew the blood, sent it to where it needed to go in the right format, and I was able to get that information.” So I think that telemedicine allows them access to people who understand how to interpret that information. But I think we have to give a lot of props to a lot of these companies that are really getting innovative in how they’re capturing the data, saying, no, you know what? You don’t need to have this done in Scottsdale, Arizona or Phoenix, Arizona. You can have this done in your own home and wherever your home happens to be.

So I think that that type of thing is really changing some of how we can utilize that data that’s very personalized, but be able to use it in a telemedicine format where we don’t need people to physically come here to get their blood taken. Now, I do want to add the caveat. There are a number of different institutions have enormous amounts of lab work that’s looking at things above and beyond the approved tests that have been validated and everything. And that would be a lot harder to get. There still are ways of doing that, but I think that we have to acknowledge that there is something that we do lose by doing that. Although I can get a lot of information, be able to provide a lot of input to a patient. It still doesn’t address the fact that by physically being there, sometimes you can get samples that you can biobank and you can send to somebody’s lab. And then these are the people who are discovering the new things that really that’s how we learned what we know so far. Is because somebody went and looked at these genes and more and more and more of this is going on. So I want to temper this with saying not everything can be done by a telemedicine.

That we have to be thoughtful about our approaches and really utilize combining in-person visits along with telemedicine to really do care. And to give an example, what I do for patients is if I follow them by a telemedicine only, I won’t actually be a prescribing doctor. I won’t be a primary provider. I have to at least see them once a year if I’m going to give medicines or do things like that. So I think that there’s a hybrid model that’s going to be really important to do as well for patients who are able to do that.

Lisa Hatfield:

Thanks for that.

Dr. Palmer:

If that makes…yeah.

Lisa Hatfield:

It does make sense. And I just had a quick question too. So if I’m coming in or I’m going to see my…I’m a newly diagnosed MPN patient going into my local oncologist. I’m watching this webinar and I hear, “Oh, if somebody came to my home. I could maybe do telemedicine, or I can have somebody come to my home and take my blood and look at these genetic mutations. My local oncologist doesn’t know exactly how to go about doing that.” Would that be the point where they might try to contact a specialist or go through the consult center through Mayo Clinic or somewhere to say, “Oh, I need a specialist to help me access this type of testing?”

Dr. Palmer:

So I have to be very honest. I just learned about this type of testing in the last year or so. And so it’s something that I’ve started to be able to utilize. With myeloproliferative diseases, I think, and very honestly, and there’s a number of us specialists around the country, I think everyone seeing one at least once in terms of just saying, hey, what’s our plan of care going to be? Are we looking at all the angles of it is a really important thing to do. And I think there’s a number of excellent physicians out there in different parts of the country that some of whom are using telemedicine, some I’m not sure that they are. But I think that getting that specialized opinion is extremely important. I think then in terms of managing care, there’s multiple… There’s multiple ways that can be configured that will help take care of the patient depending on their individual needs and their ability to travel and everything. 

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

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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?

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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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What Role Does Technology Play in MPN Symptom Management?

 Emerging Novel Technologies and Therapies for MPN Care

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?

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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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What Role Does Technology Play in MPN Symptom Management?

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What Role Does Technology Play in MPN Symptom Management? from Patient Empowerment Network on Vimeo. 

How can MPN symptom management be aided by technology? Watch as expert Dr. Jeanne Palmer shares how technology helps in gathering and monitoring  of MPN patient symptoms and in the clinical trials process.

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Transcript:

Lisa Hatfield:

So another question for Dr. Palmer, Is technology playing a role in accelerating progress in MPN care, not just the technology of telemedicine, but other technologies? And what role does technology play in symptom management and in clinical trials? You mentioned that you can maybe do telemedicine every other month, but what other roles does technology play?

Dr. Palmer:

So that’s a great question. I actually have been fortunate enough to work with an informaticist who will be joining our faculty this summer, and what we are trying to do is be able to utilize our electronic medical record and some of the forms and texts that you can use within it to be able to capture data and be able to understand it. From the standpoint of even my day-to-day practice, one of the things that’s very important in myeloproliferative diseases is capturing the symptoms score. And this is a way of measuring some of the symptoms that can be very bothersome and troublesome to patients with myeloproliferative diseases and has been validated and utilized throughout multiple studies and multiple settings. So I’m actually in the process of getting that built into our EMR here, so that before patients even come and see me, they can fill out that form of questions. And I think that the sky is the limit. There’s so many patient-reported outcomes and so many things that are going to be important to capture as we move forward. And a lot of times you can ask somebody, how do you feel? And they say, “Oh, I feel great.”

Because what else are they supposed to say? Social norm is to say everything’s fine, and then you start to ask them specific things like, “Are you having itching? Are you having fatigue?” And all of a sudden it comes out that they’re really not feeling that well. So this will be really important, and if you can have people do that beforehand, and I think that we can gain a lot of information that can really help utilize the small amount of time we have to focus it on the areas that need to be focused upon.

Lisa Hatfield:

That’s great to hear. Yeah.

Dr. Palmer:

Yeah, the other thing that I didn’t mention is that I think being able to do research, it will be very helpful if we can capture all the data about patients in a way that can be outsourced to a database and then analyzed versus having to hire people to extract information directly from the chart, which is a very laborious process and often not very accurate. So that’s one of the things that we’re working on here is to say, “How do I not only create this template for capturing information from the patient, but how do I make my clinical notes into something that can be harnessed for a database that can then be queried for different questions to try to understand the disease better?”

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How Did COVID-19 Impact MPN Treatment?

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How Did COVID-19 Impact MPN Treatment? from Patient Empowerment Network on Vimeo. 

How was MPN treatment impacted by the COVID-19 pandemic? Watch as expert Dr. Jeanne Palmer discusses the positive and negative impacts of COVID-19 restrictions on care of MPN patients.

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Transcript:

Lisa Hatfield:

All right, so, Dr. Palmer, the COVID pandemic has resulted in significant changes to many aspects of daily living for all of us, but for patients like myself who are living with cancer, there are different realities that we have to deal with, so can you give a brief overview of the impact that COVID-19 has had on MPNs.

 Dr. Palmer:

So I think the impact of COVID-19, I think we just spoke about some of the favorable things that telemedicine became a real reality, some of the detrimental things, enrolling in clinical trials has been very, very difficult because of the fact that, number one, the public health emergency, some patients weren’t able to travel. And then number two is, I think there has been sort of an exodus of people working in healthcare, I think healthcare has become extremely stressful because of all the pressures associated with the COVID pandemic. So having the appropriate staffing for clinical trials has been difficult, but one of the things that I think is coming out of this that I think will be really positive is there are a number of studies that are being looked at now that are actually creating ability to have some of the visits done by a telemedicine. So taking what’s not as critical to be seen in person, and what labs we don’t need to necessarily get that need to go to a central processing area, but there are actually ways that we are working with home health care companies with different labs to be able to provide some of this ability to do telemedicine, especially on the clinical trials where there’s monthly visits.

I have had patients travel from multiple different areas of the country to be on clinical trials. I’m usually more in the Southwest or at least the West Coast, but I think that with some of these changes, it’s going to be a lot more of a reality for it. So I think some of the pressures of the COVID pandemic will…again, there will be sort of a silver lining of it, and that we may have this ability to do that, because even if I looked at…you look at the pre-COVID clinical trials, if there was a trial that needed monthly visits, which a great number of them do, I would say the majority of my studies that I have for patients with MPNs require monthly visits, at least the first six months. Being able to have that extended out is hugely important and will allow access for it, so if we can have a virtual visit, even every other visit, that can make a big difference in somebody’s ability to access new treatments.

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How Can MPN Patients Access Telemedicine?

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How Can MPN Patients Access Telemedicine? from Patient Empowerment Network on Vimeo. 

How are MPN patients able to access telemedicine? Watch as experts Dr. Jeanne Palmer and Dr. Joseph Sirintrapun discuss access aspects of telemedicine, benefits of telemedicine, and the potential for changes after the COVID-19 public health emergency ends.

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Transcript:

Lisa Hatfield: 

We’re going to have a real-time look at telemedicine. I like to start with the current landscape and the ever-changing yet ongoing role of telemedicine, so starting with Dr. Palmer, How does telemedicine work, and how does an MPN patient ask for, or access telemedicine? How do you do that at your center?

Dr. Palmer: 

So telemedicine has been a real…one of the blessings that’s come out of this whole COVID pandemic because it put fast forward on the development of it and certainly has opened a lot of doors. I think one of the beneficial things of telemedicine is in a disease like MPNs, these are very rare diseases and there are not a lot of specialists in the country. So depending on where you live, there may or may not be somebody who specializes in this disease focus. So by having telemedicine, you can have access to a provider who has a higher level of specialty in that specific disease. I think this is really important for any rare disease, just because of the difficulty in finding specialists. Many of them are in urban areas, and so if you live in a rural area or somewhere outside of that specific zone, it can be very difficult to come and see a specialist. Additionally, it can be very costly.

If you look at the cost of the airfare and the lodging and everything else, I think of people coming to Scottsdale can pay an enormous amount of money just to come for two nights and to be able to see me. So the fact that we can do this via telemedicine, they can get the information, receive the education about the disease and help for maybe their local provider and managing it can make a huge difference in the quality of care.

Lisa Hatfield:

Great. Well, thank you. So from a practical perspective, and if you have a newly diagnosed MPN patient and they wanted to get specialized care or talk to an expert, would they just call…would they just look up online and find a phone number and try to call your clinic or how would they access maybe as an expert opinion from you, via telemedicine?

Dr. Palmer:

So as of right now, the best way to access it is if you go on to the Mayo Clinic website, there’s actually a referral phone number where people can self-refer for a consultation. Now, the changing part of this, the changing part of this landscape is that right now we’re still in the public health emergency, so a lot of the barriers between seeing patients in different states based on…because I have a license in Arizona, I don’t have a license in another state. That’s going to become a bit more challenging because of the fact that if the physician…like, for example, myself, if there’s a patient who wants an opinion who lives in Nebraska, I don’t have a Nebraska license, so therefore it would be a lot more challenging, because I can’t actually do an initial consultation via telemedicine once the public health emergency ends.

I think this is a really important thing that needs to be worked on, probably on more of a legislative level of trying to change some of the rules and laws associated with this, and something that I know there’s a number of people working on, but as of right now, and I think…I don’t remember when the public health emergency will be ending, but during the public health emergency, it’s just been a matter of just calling in like you’d normally try to get a consult. However, that will change and hopefully, as more awareness of telemedicine and some of its benefits are really understood that some of these laws can change and some of these processes can change so that they can allow people to get access to care they otherwise wouldn’t be able to receive.

Lisa Hatfield:

Yes, I appreciate that, and I will be a fierce advocate out there trying to have those telemedicine benefits continue, because I do come from a more rural state, so I appreciate those.

Dr. Sirintrapun:

To help answer some of the points that Jeanne had brought up. The American Telemedicine Association works very hard in terms of looking at the same problem about the state laws, being able to be licensed and have ways to overcome state barriers, and then another one about the public health emergency…and it is true, I’ve been hearing that it’s going to end some time in a couple of months, so that’s one thing to keep in mind as well, and they’re going to have to look in terms of what to do afterwards. Because there’s a lot of things that patients enjoy, providers enjoy that they’ll have to continue that technically go away, but we don’t necessarily want to see that go and so these are the things that we’ll have to keep in mind moving forward after the public health emergency ends.

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What Do MPN Patients Need to Know About Clinical Trials?

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What Do MPN Patients Need to Know About Clinical Trials? from Patient Empowerment Network on Vimeo.

What is a clinical trial and how does patient participation work? This animated video provides an overview of clinical trials, the process, and details key steps for engaging in your care.

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Transcript:

Brian: 

Hi, I’m Brian and this is my doctor, Dr. Liu. 

I have myelofibrosis, which is a type of myeloproliferative neoplasm, or MPN as it’s commonly referred to. 

And when discussing therapy with my doctor. She suggested a clinical trial might be my best treatment option. Dr. Liu, can you please explain what a clinical trial is? 

Dr. Liu: 

Absolutely. In basic terms, a clinical trial is a research study that involves human volunteers. The goal of cancer clinical trials is to discover new and improved approaches to prevent or treat the disease.  

There are typically four phases of a trial. Each phase gathers valuable information about the treatment and helps measure its effectiveness1.  

But, Brian you had some hesitations at first, right? 

Brian:  

That’s right.  Although I trusted your advice, I definitely had questions about the process.  

One thing I worried about was safety. I asked Dr. Liu how I would be kept safe if I participated in a clinical trial. 

Dr. Liu: 

I hear this concern a lot from patients. But every trial has a strict safety protocol, with set guidelines in place to protect patients.  

Additionally, researchers must follow patient safety rules, which are regulated by the U.S Food & Drug Administration (the FDA). And an institutional review board (or IRB) regularly reviews a study at each study location. Plus, many trials are overseen by a group called a data and safety monitoring committee2. 

Finally, there is also a clinical trial team that can include healthcare team members like cancer researchers and oncology nurses. This team regularly observes the health of each participant, through each stage of the process. Because of this, trials often involve more testing and visits, which can be a bigger commitment for a patient. 

Brian: 

When Dr. Liu explained the safety measures, it helped me feel more confident in the process and comfortable about participating. So, then I asked which trial she would recommend for my individual disease.  

Dr. Liu: 

It’s important to note that every trial has “eligibility requirements” that include things like a patient’s age, health, and prior treatments they have received. These requirements determine whether a patient qualifies for a trial. 

We talked about which trials may be a good fit for Brian and discussed the pros and cons of each one. We also reviewed the logistical and financial impact the trials could have on his life.

Brian: 

That’s right. Dr. Liu also pointed out that patients can leave a trial at any time–for any reason– once they have enrolled.

Dr. Liu: 

That’s right—participation is completely voluntary. 

Brian: 

One of the main reasons that I joined a trial was because I wanted to find out if a treatment in development would be more effective in treating my cancer. AND I wanted to help advance research forward, so I could help the MPN community.  

Dr. Liu: 

Right, Brian. Patients may have different reasons for participating, but trials are the only way to develop and study new and improved treatments for MPNs. 

Now that you understand more about trials, how can you find out more? 

  • Start by asking your doctor if there are any trials that you are eligible for.  
  • If there is a trial that your team recommends, ask to discuss: 
  • The treatment approach used in the study and the purpose of the trial. 
  • The risks and benefits of participation. 
  • The financial costs, if any, and if there are assistance programs to help if you need it. 
  • The location of the trial and whether it can be coordinated with your local institution if it isn’t conveniently located—or if transportation is available. 
  • And, how often you will need to visit the trial site and how long the trial will last. 
  • Finally, continue to educate yourself, using resources like clinicaltrials.gov. 

Brian: 

We hope you found this information useful! Visit powerfulpatients.org/MPN to learn more about clinical trials and MPN research. 

Dr. Liu: 

Thanks for joining us! 

Should All MPN Patients Undergo Molecular Testing?

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Should All MPN Patients Undergo Molecular Testing? from Patient Empowerment Network on Vimeo.

Dr. Gabriela Hobbs discusses the necessity of molecular testing for myeloproliferative neoplasm (MPN) patients, including the pros and cons of this in-depth testing for patients with polycythemia vera (PV) and essential thrombocythemia (ET).

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

How useful is having a genetic panel done? Should all patients get molecular or genetic testing? 

Dr. Hobbs:

Great question. And I think that it is very important to have genetic testing.   

And genetic testing involves more than just testing the JAK2 mutation. So, we know that the JAK2 mutation is the most common mutation in patients with MPN. But that being said, there are other mutations that also occur such as the calreticulin mutation and the MPL mutation.   

And so, I think having genetic testing that at least tests for those three mutations is very important so that we can actually help a patient know that they have an MPN. In addition to those three main mutations, many clinicians now have access to what’s called extended next-generation sequencing, where there’s a panel that tests for many different genes at the same time and can test for a variety of other mutations.  

And this is particularly relevant for patients with myelofibrosis. As we know that having other mutations, like, for example, mutations in IDH or ASXL1 and others, can increase the risk of that disease in terms of its risk of transforming to leukemia or how long a patient may live with their myelofibrosis. 

And so, I do recommend having extended next-generation sequencing done at least at diagnosis.  

When I generally think about repeating that, if there’s something that looks like it’s changing within the patient’s disease, to be honest, also on the flipside of that argument, sometimes this next-generation sequencing will mostly contribute to adding anxiety and will not necessarily directly impact how a patient is treated. And this is particularly true in patients with PV and ET, where we’ll sometimes order these tests, and we get a bunch of mutations back, but we don’t know what to do with that information yet.  

And so, as a researcher – not a clinician – as a researcher, I think it’s very important to have that information so that we can then do studies and understand the patterns of mutations and how that affects outcome. But as a clinician, and you as a patient, you need to really be aware of how that’s going to impact the patient in front of you and how that may impact you as a patient. Do you want to know if you have these mutations if nothing can be done about it? So, I would say, take a moment to reflect upon what I said and also to ask your clinician, how is this information going to help me? Do I need to have this information?  

Maybe you want to have it done so that it’s in your record. But maybe you don’t necessarily want to know those results. And everybody’s very different. And I think it’s absolutely wonderful to talk to my patients about all the information. But there may be some patients that really are just, like, do the test but don’t tell me the results, because I know that I’m just going to be very anxious knowing that I have something that I can’t do anything about. So, just take a minute to talk about it with your doctors. I think that’s really important.  

What Are the Long-Term Effects of JAK Inhibitors?

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What Are the Long-Term Effects of JAK Inhibitors? from Patient Empowerment Network on Vimeo.

MPN expert Dr. Gabriela Hobbs discusses what researchers know about the long-term safety of JAK inhibitors and options for patients if the treatment loses effectiveness over time.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

What are the long-term effects of JAK inhibitors? And what happens when JAK inhibitors are no longer effective? 

Dr. Hobbs:

Yeah. Great question. So, so far the patients that have been on JAK inhibitors for a long time don’t seem to have the development of additional toxicities that we didn’t know about.  

So, I’ll just comment on some of the things that we do know about. Weight gain is a common complaint that I have from patients, especially those that have polycythemia vera, because maybe they didn’t want to gain weight when they were put on a JAK inhibitor compared to the myelofibrosis patients who maybe had lost a lot of weight before being on a JAK inhibitor.  

There are certainly higher risk probably of developing infections with some of the JAK inhibitors. And we see, for example, shingles reactivation being a common one. And there’s the concern of development of skin cancers, which has been seen with some JAK inhibitors. But generally speaking, long-term use seems to be safe. That being said, ruxolitinib (Jakafi), which is the oldest one to be approved, has only been around since 2011, so we don’t have decades worth of experience to know.  

When JAK inhibitors stop working – to answer the second part of your question – until fairly recently we really didn’t have a whole lot to offer because there was only one JAK inhibitor. Now we have two others. We have fedratinib (Inrebic) and also pacritinib (Vonjo). And we know from the studies that have been done with both of these agents that some patients that lose response to Jakafi, meaning that their spleen starts to grow or their symptoms start to come back, can be treated with these other JAK inhibitors.  

And many patients will, again, have control of their spleen and symptoms. Now losing response to a JAK inhibitor can come in many different ways. And so, some patients may also develop signs of having leukemia or progression of their disease to leukemia. And, unfortunately, for those patients, being on another JAK inhibitor doesn’t make sense. So, those patients may need to receive other types of medications or a stem cell transplant. 

Advances in Myelofibrosis Research

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Advances in Myelofibrosis Research from Patient Empowerment Network on Vimeo.

What are the recent developments in the study and advancement of myelofibrosis treatment? MPN researcher Dr. Gabriela Hobbs discusses ongoing clinical trials for new JAK inhibitors, BET inhibitors, and anemia therapies, among others.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

What about myelofibrosis, Dr. Hobbs? What advances are being made in the care of patients with this more advanced MPN? 

Dr. Hobbs:

Yeah. So, in myelofibrosis, I would say it is almost difficult to keep track of how many clinical trials are currently open. So, in 2011, we had ruxolitinib approved, or Jakafi. That was the first JAK inhibitor. Since then, we’ve had two more JAK inhibitors approved, fedratinib (Inrebic) and most recently pacritinib (Vonjo). And we’re currently awaiting the fourth JAK inhibitor to be approved, and that’s called momelotinib.   

And in addition to the JAK inhibitors, there are lots of other clinical trials underway right now that are either alone – a drug by itself or a drug in combination with ruxolitinib.  

So, there are several Phase III studies. And the reason why that’s important is that after Phase III we usually see a drug approval. So, we can expect, hopefully in the next couple of years, to see many more drugs available on the market to treat patients with myelofibrosis. Some of those include agents that block different pathways within a cell. And that includes a drug called parsaclisib. There’s a drug called pelabresib (CPI-0610), which is a BET inhibitor.  

There’s another drug called navitoclax (ABT-263), which is a cousin of venetoclax (Venclexta), which is a drug that we’ve been using a lot in leukemia. So, there’s lots of different drugs that are being used in combination with ruxolitinib. There’s also a drug called luspatercept (Reblozyl) that’s also been approved for myelodysplastic syndromes. And I suspect that that’ll be approved as well to help patients with anemia. So, really, there’s lots of drugs that are being studied right now. And I think the question that we’re all asking is, well, how are we going to use all of these different drugs? So, I look forward to seeing the results of those studies.  

Katherine:

Mm-hmm. Will some drugs work better for some patients and others not? 

Dr. Hobbs:

That is such a good question. And so, what I’m hoping to see is exactly that. I’m hoping to see that for patients, for example, with anemia, perhaps we’re going to be using luspatercept and momelotinib. Perhaps we’re going to see that patients with certain mutations may respond better to certain medications like the BET inhibitors or navitoclax or the PI3 kinase inhibitor, parsaclisib. But as of now, we don’t have enough information.  

We haven’t seen enough results of these studies to start to be able to know, you know, what is the patient that’s going to do better with two drugs versus one drug? And so, I think that over the next couple of years we’re going to start to have answers to those questions.  

Advances in Polycythemia Vera Research

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Advances in Polycythemia Vera Research from Patient Empowerment Network on Vimeo.

What are the recent developments in the study and advancement of care for patients with polycythemia vera (PV)? Dr. Gabriela Hobbs reviews recently approved PV treatments as well as those currently in clinical trials.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

There was recently an interferon approved for use in patients with PV. What other studies are showing promise for patients with PV?   

Dr. Hobbs:

Yeah. So, we as a community, there’s been a lot of excitement about this new interferon that was approved, the ropeginterferon (Besremi) study. And there are still some ongoing studies utilizing ropeginterferon to see if we can use it differently.  

Because currently the way that that drug is approved is that it has to be titrated up very slowly to get to the maximum dose. So, that’s something that is still ongoing. In addition, there’s a new drug that’s being studied called Rusfertide (PTG-300) from a company called Protagonist. And this drug has been very interesting. It acts through iron metabolism.  

And so far in preliminary results, it has shown that a lot of the participants that receive this medication no longer need phlebotomy. And I think what’s exciting about this is that phlebotomy is a very archaic way of treating patients.  

And I hope that we can stop utilizing it. So, it’s nice to have a compound that’s specifically asking that question. And the other thing to keep in mind is that this drug has been used in combination with other drugs, which is really reflective of how participants or patients show up to clinics.  

Some patients are not going to be on any medications. Some patients may be on hydroxyurea (Hydrea).  

Some patients may be on an interferon. Some patients may be on ruxolitinib (Jakafi). And these trials allow participants to be on a variety of different medications. So, that’s an exciting new compound. 

Advances in Essential Thrombocythemia Research

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Advances in Essential Thrombocythemia Research from Patient Empowerment Network on Vimeo.

Are there new treatment developments for patients with essential thrombocythemia (ET)? Dr. Gabriela Hobbs shares an update on ET therapies in clinical trials and discusses when it might be appropriate for a patient to join a clinical trial.

Dr. Gabriela Hobbs is a hematology-oncology physician specializing in the care of patients with myeloproliferative neoplasms (MPN), chronic myeloid leukemia, and leukemia. Dr. Hobbs serves as clinical director of the adult leukemia service at Massachusetts General Hospital. Learn more about Dr. Hobbs.

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Transcript:

Katherine:

Let’s talk about ET for a moment. Is there any research being done to help better manage this condition? 

Dr. Hobbs:

Yeah. I would say that of the three MPNs, ET is certainly the one that has the least amount of drugs that are being currently studied for this group. But that doesn’t mean that there isn’t any research. Ropeginterferon (Besremi), which was recently approved in polycythemia vera, is now being studied in essential thrombocythemia.  

So, I would expect in the next couple of years, if those trials are successful, to have ropeginterferon as a therapy to offer patients.  

There is also a clinical trial that we have at our site. We’re using ruxolitinib or Jakafi for patients with ET that have symptoms of their disease to see if it can help them in the same way that it can help PV or myelofibrosis patients. So, there’s definitely some research going on in ET. But probably less than for PV and myelofibrosis.  

Katherine:

Mm-hmm. While ET is typically well-managed, what patient type might benefit from joining a trial? 

Dr. Hobbs:

It really depends on what the patient is experiencing. I think there are some patients that really are very asymptomatic and can expect to have an excellent outcome with their disease. But they can also participate in research, for example, by participating in a tissue bank and offering a sample of their blood or if they have a bone marrow by offering some bone marrow if there’s extra.  

Because that can really help to understand the disease biology, if a patient is going to progress from ET to myelofibrosis.  

So, we can learn a lot from that. But then there are maybe some ET patients that need to be on a medication to reduce their blood counts or a cytoreductive agent.  

And that’s a patient that could ask about participation in a clinical trial. For example, the ropeginterferon study or, like I mentioned, there may be some patients that maybe are already on a medication, and their blood counts aren’t well-controlled on the first drug that was used. 

So, before considering switching to a second-line agent or a second medication, that could inquire with their clinician if there’s a clinical trial available for second-line use. Or those patients that have a lot of symptoms with ET, they could potentially be eligible for a study that addresses just symptoms.