Is There Financial Assistance for Myeloma Patients?

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Is There Financial Assistance for Myeloma Patients? from Patient Empowerment Network on Vimeo.

Can myeloma patients access financial assistance for their care? Expert Dr. Benjamin Derman shares information about available support and resources to reduce the financial burden on patients.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

The Role of a Myeloma Specialist on Your Care Team

 How Can You Engage in Your Myeloma Treatment Decisions? Resource Guide

 Expert Advice for Newly Diagnosed Myeloma Patients

Transcript:

Katherine:

One final question for you. Jennifer asks, “Many new medications for treatment were mentioned. And I’m sure these could be expensive. What are the options to make these available financially for patients who need them?”  

Dr. Derman:

That’s a really good question, and one that we don’t yet have great answers to. As a physician, I don’t receive compensation based on the drugs that I prescribe. And so, I do know – I often have a good sense of what these drugs cost. A lot of the costs that are passed along to patients typically revolve around oral therapies. Even patients who are on Medicare, or sometimes especially patients who are on Medicare. And looking at some of the policy changes that seem to be coming down the pike that include capping Medicare out of pocket costs for medications will be a huge benefit to our myeloma patients.  

It’s important to familiarize yourself with different organizations and the financial support that may be available. Just to name a few, and you’re not limited to these, but The Leukemia & Lymphoma Society does a really great job in providing financial support to patients. But there are definitely other programs that can be contacted for this.  

And also, a lot of the pharmaceutical companies will actually have patient assistance programs as well. Sometimes it’s as simple as asking your provider, and typically they will have their team look into this for you. But we’re fortunate to have a team of pharmacists and my nurses as well who are used to doing this kind of thing. So, it’s important to look into those as well.

How Can Myeloma Patients Cope With Fatigue?

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How Can Myeloma Patients Cope With Fatigue? from Patient Empowerment Network on Vimeo.

Fatigue can have a big impact on daily life for people with myeloma, so how can this common symptom be managed? Expert Dr. Benjamin Derman shares insights about why fatigue occurs, advice about treatment timing, and recommended adjustments to optimize energy levels.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

What Factors Affect Myeloma Treatment Decisions

 How Is a Myeloma Patient in Active Treatment Monitored?

 Expert Advice for Newly Diagnosed Myeloma Patients

Transcript:

Katherine:

Craig sent in this question prior to the program. “My primary side effect is fatigue.” And you just mentioned that. “What advice do you have for planning activities through the day?”  

Dr. Derman:

So, this is a very common side effect that we see. In part, it can be from the disease itself. And if that’s the case, it’s going to get better as treatment works. In other cases, it’s due to the treatment itself. And sometimes there are controllable aspects. If it’s a pill, let’s say, where you can control the timing of when you take it. I often tell patients, “Take the drug at night. Because if it makes you tired, at least you’re going to be going to sleep at that point.” 

I do think making sure that you have a good night’s sleep is important. I think making sure that you keep your day-night cycles. So, even if you feel fatigued and you’re at home, it’s not good to be having the windows closed and not being exposed to the outdoors at all. You need light during the day. That’s a normal human need. We do the same thing when patients are in the hospital, and it’s very easy to get your day and night cycles messed up.  

And the other thing too is planning periods of the day when you know that your activity level is going to be, or your energy level is going to be higher, and planning your activities around those times. I think those are at least some important things that we can do.  

Myeloma Maintenance Therapy | What Patients Need to Know

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Myeloma Maintenance Therapy | What Patients Need to Know from Patient Empowerment Network on Vimeo.

What should myeloma patients know about maintenance therapy? Expert Dr. Benjamin Derman discusses the role of maintenance therapy, data presented at the 2022 American Society of Hematology (ASH) meeting, and the role of minimal residual disease (MRD) testing in myeloma care.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

How Can Myeloma Patients Cope With Fatigue

 What Are the Phases of Myeloma Treatment

What Are the Phases of Myeloma Treatment?

 Making Myeloma Treatment Decisions at Every Stage of Care

Transcript:

Katherine:

When a patient goes into remission, they’re often placed on a maintenance therapy. What’s the role of maintenance therapy in myeloma care?  

Dr. Derman:

Yeah. So, maintenance, just to specify, is typically something that we call a long duration of usually, less intensive therapy after a more intensive schedule of therapy. So, the most common area that we talk about maintenance is after, let’s say, an autologous stem cell transplant, which came after induction therapy that I mentioned.  

But for patients even who don’t go to a stem cell transplant, they can also go on maintenance therapy. So, when we think about the frontline setting, which in this case would be induction transplant maintenance, the most commonly used drug is a single agent lenalidomide (Revlimid). And that’s been shown to have survival benefits not just in keeping the disease away, but also helping patients live longer. So, maintenance therapy does seem to carry some real importance. One of the things though that we don’t know, is really how long patients need to be on maintenance therapy.  

So, we can all accept I think in the myeloma field, if there’s one thing we can agree on, is that maintenance is important. But the question is, what makes up that maintenance therapy? And then how long? Those are questions we don’t really have the best answers to. And actually, one of the areas that I do quite a bit of research in is about this, how long do patients need to be on therapy?  

So, we recently published some – we presented at ASH this year in 2022, some recent data, at least a preliminary data on patients who had really deep responses, and who we stopped their maintenance therapy after at least one year – but the average was about three-and-a-half years on maintenance therapy – to see if the disease would actually be at risk of coming back.  

And so, what we’re finding is that even in the first year, about 85 percent of patients did not have their disease come back after stopping therapy. So, maintenance therapy is certainly important, but I think we still have to figure out how long patients need to be on that therapy.  

Katherine:

Right. And I can imagine that each person, each patient is different, and some – the maintenance therapy would work really well for them for a long period of time. For others, not necessarily.  

Dr. Derman:

Yeah. I mean, a lot of it comes down to the risk there of the patient’s myeloma. And what I mean by that is – so, somebody has explained to me previously, and I really like the analogy that myelomas are kind of like people. They have different personalities, and they give first impressions. And sometimes your first impression of a myeloma may end up being wrong. You thought it was going to be really hard to treat and you found out that it actually responded pretty nicely to therapy. And other times, it’s the other way around.  

But for the ones that give us a bad first impression, we’re going to be treating those patients typically more aggressively. At least that’s my personal approach. And I take that all the way through from induction, to transplant, even into maintenance therapy where I mentioned already, most people will prescribe a single drug as maintenance therapy. But for those patients, I’m typically going to be prescribing more than that. Or I will continue more aggressive therapy for longer. So, that’s where you have to sort of adapt your therapy in some cases to the patient and their disease characteristics.  

Katherine:

Related to maintenance therapy, we received this question before the program. How do doctors feel about maintenance breaks if you are MRD-negative? Or in a very good response?  

Dr. Derman:

So, I want to be very careful about how I respond to this. Because what I’m going to say is, there’s currently no data to tell us that patients should stop. I mean, in part that’s, you should stop therapy. In part that’s what I’m hoping that we can answer with our study. There’s another large cooperative group study trying to answer this as well, about the duration piece and whether people can stop.  

So, a very good partial response signifies at least a 90 percent reduction in the tumor, in the myeloma, but not 100 percent.  

And there’s also a complete response, which means there’s no detectable disease by conventional methods in the bone marrow or in the blood, but that there can still be microscopic or low levels of cancer cells which we call minimal residual or measurable residual disease. Also called MRD.  

So, MRD negativity is a not so nascent field now, where we are trying to quantify small amounts of cancer cells that may still be present. And the theory is that the presence of residual disease at a small measurable level is what’s ultimately responsible for myeloma relapsing.  

We used to think like, “Oh, a patient is in a complete response. That’s amazing. Let’s clink our champagne glasses. Let’s celebrate.” And there’s still cause for celebration for that. That is a great achievement. But we know that that doesn’t mean we can rest on our laurels. If there is MRD-positive disease, then the disease, it can likely come back. And that’s where suppression of the disease with something like maintenance therapy with lenalidomide is probably helping a lot.  

Katherine:

Yeah. 

Dr. Derman:

But let’s say we have people who don’t have detectable disease, the question is, can they stop? And like I mentioned, we’re trying to answer that question. I would say right now, there’s no recommendation for that. I can’t say in good faith that you should be doing that, unless it’s as part of a clinical trial, which is what we’re hoping to answer.  

What Is Known About the Risk of Myeloma Relapse?

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What Is Known About the Risk of Myeloma Relapse? from Patient Empowerment Network on Vimeo.

Myeloma relapse is common, but what is known about the the probability of relapse? Expert Dr. Benjamin Dermain explains the significance of clinical trial data and the important role of blood work, including monitoring M-spike and light chain levels.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

What Are the Treatment Options for Relapsed/Refractory Myeloma

 Relapsed and Refractory Myeloma Defined

Relapsed and Refractory Myeloma Defined

 Expert Perspective Advances in Treating Relapsed and Refractory Myeloma

Transcript:

Katherine:  

Is research being done to determine the likelihood of relapse and when that might occur?   

Dr. Derman:  

Yeah. I mean, we can look at clinical trial data for regimens that have been tested in the relapsed or refractory setting and say, “Okay, we know that this three drug regimen typically gives patients a year before the disease comes back.” Or “This one gives two-and-a-half years or three years.” So, that’s one piece.  

But when you think about who – if you wanted to know ahead of time, “Okay, a patient with high-risk disease, they’re likely not to have as good of a response.” But nobody knows ahead of time the exact amount that they’re going to relapse.  

But one of the things that we focus on, part of the reason that patients get a good amount of blood work when they have myeloma and they’re on therapy is that we have a measure in the blood, or we have several measures in the blood, where we can monitor for relapse. So, we can look at the abnormal proteins, what we call paraproteins in the blood. Either as the M-spike, is what it’s called, or light chains. We look at both of those to see if there are increases in those numbers over time.

When a patient’s responding, those numbers come down. When a patient is losing response and their disease is progressing, that’s when we start to see those numbers go up. And that’s often an indication that we need to switch treatment, even before a patient develops symptoms related to their myeloma.   

What Are the Treatment Options for Relapsed/Refractory Myeloma?

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What Are the Treatment Options for Relapsed/Refractory Myeloma? from Patient Empowerment Network on Vimeo.

What do relapsed/refractory myeloma patients need to consider when choosing a treatment approach? Expert Dr. Benjamin Derman explains the impact of previous therapies on options, various treatment classes available, and why combination treatments may be optimal.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

What Are Current Myeloma Treatment Approaches

 Myeloma Induction and Consolidation Therapy Defined

Myeloma Induction and Consolidation Therapy Defined

 Making Myeloma Treatment Decisions at Every Stage of Care

Transcript:

Katherine:

Unfortunately, relapse is common among myeloma patients. Or it may be that a treatment stops working, and so the person’s myeloma becomes refractory.   

When considering a treatment for relapsed or refractory myeloma, are there different questions that patients should be asking their healthcare team?  

Dr. Derman:

Yeah. I mean, that’s a great question. I think part of it is every patient’s journey with myeloma ends up being quite unique, in part because we don’t have a lot of consensus in terms of how to treat myeloma. So, I may choose one regimen, but the other doc down the street is going to recommend a slightly different one. And now, they all have efficacy. No one’s going to be recommending something that’s not good, right? But what it means is that the journey, the number of therapies, the types of therapies that a patient has received are all going to be quite different than the next.  

So in part, sometimes the past therapies are going to dictate what options are available.  

So, I mentioned some different classes of therapies. The proteasome inhibitors, there’s a certain number of those. The immunomodulatory iMiDs, there’s a certain number of those. The CD38 monoclonal antibodies, there are those. And then there are a few other drug classes as well. 

And if we’re using three or sometimes four drugs at a time for each what we call line of therapy, meaning each time a patient changes treatment – right? Eventually, we’re going to have gone through a number of treatments that now the patient would be – their disease would be resistant to. And so, you don’t really – it’s not really going to be prudent or wise to go back to therapies that didn’t work previously.

And so, we start mixing and matching, and we come up with regimens that we think are going to hopefully throw a curveball to the myeloma to really try to get rid of it again. That’s what I mean by it’s dictated by past therapy.  

Key Questions to Ask Your Myeloma Doctor About Induction Therapy

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Key Questions to Ask Your Myeloma Doctor About Induction Therapy from Patient Empowerment Network on Vimeo.

What key questions should you ask your myeloma care provider when choosing induction therapy? Expert Dr. Benjamin Derman discusses factors that are important for patients to consider when making treatment decisions along with their care team.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

What Are Current Myeloma Treatment Approaches

 Myeloma Induction and Consolidation Therapy Defined

Myeloma Induction and Consolidation Therapy Defined

 Making Myeloma Treatment Decisions at Every Stage of Care

Transcript:

Katherine:

Let’s share some tips for having that conversation. I’d like to start with induction therapy, which is the first line of treatment for patients. What questions should patients ask when choosing therapy early in their diagnosis?

Dr. Derman:

Yeah, that’s a great question. And it’s of course – it’s really the patient priorities I would say. So, one of the things that I like to discuss with patients is, number one, what are the things that they value? And that’s a hard question to ask without any qualifiers.

So, one of the things that I often ask patients to think about is the – first of all, the number of visits to the medical center. Certain therapies are weekly, certain therapies may actually decrease in frequency overtime. So, if that is something, it’s hard to travel, it’s hard to get someone to take you or to come yourself, or you just don’t want to be in the clinic as much – right? If that’s your number one priority, there are going to be certain therapies that are – or regimens that may be better suited for that patient. If somebody says, “I don’t care how many times I have to come, my goal is the deepest response possible,” you can think about things from that standpoint.

I mentioned side effects. What are the things that are scary to you personally, as a patient? Some people may look at that neuropathy, as I mentioned, and say “No way. That sounds horrible. I can’t do my job.” Other people would say, “I already have some cardiac issues. I don’t want to take that risk.” Right? So, there are different side effects that we have to take into account.

Especially when it comes to talking about transplant, there is not just the acute issues that we have to deal with in terms of side effects, but also long-term immunosuppression. Meaning the immune system is suppressed, and there’s a risk of infections, and it’s going to be higher than if you had not gotten a transplant. So, those are at least some of the things that I encourage patients to be thinking about.

I would also say, on top of that, patients may be approached about clinical trials. And I work at a university where we really value enrolling patients in clinical trials. But that they do come with some inconveniences as well, even though I think they really help to advance the field forward, and sometimes offer patients options they wouldn’t normally be able to get. But there are typically more visits associated with that, more evaluations, more blood draws, more bone marrow biopsies, so those are things that you really have to take into account.

What Factors Affect Myeloma Treatment Decisions?

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What Factors Affect Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma treatment decisions can vary by patient. Expert Dr. Benjamin Derman reviews factors that may guide induction therapy choices, treatment classes currently available, and strategies for managing common side effects.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

Myeloma Maintenance Therapy: What Patients Need to Know

 How Does Disease Staging Affect Myeloma Treatment Choices?

 How Is a Myeloma Patient in Active Treatment Monitored?

Transcript:

Katherine:

There are a lot of available therapies for myeloma. And I’m wondering what factors might impact treatment decisions. You did mention comorbidities. But what other factors are there?   

Dr. Derman:

Sure. And I think in part, it depends on if we’re talking about induction therapy or in the relapsed refractory setting. Let’s focus on induction therapy, right?  

So, there are some drugs that we’re typically going to employ pretty much universally. For those who are inclined to use that CD38 monoclonal antibody that I mentioned, it pretty much plays well with patients of all walks of life. So, that’s one where I feel really comfortable regardless.  

Lenalidomide is a drug that we don’t necessarily know from the get-go if there’s going to be a patient that’s not going to tolerate it well.   

We might reduce doses up front. But for the most part, that’s another drug that we’re typically going to use. I would say the one exception is for patients who have a simultaneous diagnosis of amyloidosis. And we know that in amyloidosis, lenalidomide may not be as well-tolerated.  

But actually, one of the key decisions that I’m often making in clinic myself is around that drug class that I mentioned earlier called proteasome inhibitors. And I mentioned two different drugs. There’s bortezomib and carfilzomib. And they actually come with very different side effects that I think are important to mention.  

Bortezomib is one that is typically associated with a high rate of numbness and tingling, what we call neuropathy in the fingers and toes. And about 75 percent of patients have been reported in the trials to get this. And most of it is what we call lower grade. But I’m not in the patient’s body, and I don’t know what that – what even a grade 1, which would be the lowest grade, really feels like. And if I have a mechanic, somebody who types for a living, a surgeon, somebody who uses their hands or their or rely on their feet for their day-to-day, that’s a scary prospect, right?  

The flip side is this drug, carfilzomib (Kyprolis), is one that does not really cause nearly as much neuropathy, but has been associated with cardiac effects. Heart issues. And so, that can scare people, right? Heart’s important I hear. So, we have to be really careful in how we pick these therapies and talk about it with patients.   

What Are Current Myeloma Treatment Approaches?

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What Are Current Myeloma Treatment Approaches? from Patient Empowerment Network on Vimeo.

What should multiple myeloma patients know about current treatment approaches? Expert Dr. Benjamin Derman outlines available treatments, factors that influence options, and the role of combination therapy in myeloma care.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

Key Questions to Ask Your Myeloma Doctor About Induction Therapy

 Understanding Myeloma Treatment Types

 How Is a Myeloma Patient in Active Treatment Monitored?

Transcript:

Katherine:

What types of treatment are offered for myeloma patients?  

Dr. Derman:

Right. So, if you think about at the point where a patient is diagnosed with myeloma, unfortunately, always a tough – always tough news to receive and to share with patients as well, we start to think about dividing treatment into phases. And in part, some of it’s going to depend on, what is the fitness level of a patient in front of me? And not so much age per se, but really fitness level. And what I mean by that is independence in their activities of daily living, their ability to walk, go up flights of stairs, carry out just their daily life.  

So, assuming that all options are on the table, we consider those patients to sort of be what we call stem cell transplant eligible. 

And that picks a sort of variety of pathways that we can go down. And then the other variety of pathways we can go down are patients where either because of a comorbid conditions, there are other medical problems, or because of their fitness level, a stem cell transplant is not really going to be something that we consider.

But either way, in either case, we start with something called induction therapy, where we’re aiming to induce a remission. Or induce a response as we typically say more commonly in myeloma.  

And usually that involves a combination of three or now possibly four drugs. And it’s really, really different the way that we treat myeloma than we treat other cancers. And what I mean by that is the traditional thought of using very harsh chemotherapy drugs that make people feel very sick, very ill, lose their hair, those kinds of things. Things that are maybe more outwardly associated with chemotherapy, we don’t see that with myeloma.  

In fact, I often tell patients if they’re fortunate to not have the disease affect them so much at diagnosis, a lot of people may not even know that they’re on treatment. And that can be good and bad, because they don’t know that what you’re going through, which can be challenging in its own right.  

So, really what we use are a combination of therapies. They can be oral drugs, they can be subcutaneous injections under the skin, or infusions. And one of the newer advances is using immunotherapy in myeloma. And this is a little different than it is in solid organ cancers like lung cancer or melanoma where immunotherapy is very popular as well. 

One of the main targets that we go after is something called CD38 on the surface of myeloma cells. And CD38 can be targeted with a type of monoclonal antibody.  

And there are two that are out right now, daratumumab (Darzalex) and isatuximab (Sarclisa). Daratumumab is actually approved to be used in the frontline setting, meaning at diagnosis. And that has really allowed us to augment the already – the backbone that we’ve been already using for quite some time in myeloma.  

Dexamethasone (Decadron), which is a steroid, is typically employed in all of these cases. And then we use drugs that are in the class of what’s called immunomodulatory iMiDs, chiefly lenalidomide (Revlimid) is the main one that we use in oral drug, and that’s been approved since 2006 or so.  

And then bortezomib (Velcade), which is something called the proteasome inhibitor, or its cousin carfilzomib (Kyprolis), can be used as well in the frontline. So, we’re usually combining these three or four drugs together in order to create this sort of symphony that really targets the myeloma from many different aspects.  

Katherine:

Yeah. How do patients know if they have any of these targets, such as CD38?  

Dr. Derman:

So, actually it’s interesting. CD38 is pretty much ubiquitously exposed on the surface and expressed on the surface of myeloma cells. So, it’s in a pathology report. It’s actually one of the ways in which we can identify what makes a plasma cell a plasma cell. But CD38 is one that is essentially ubiquitously expressed.

And I say that with the idea that that expression may go down if you use these drugs to target that specific – that target. So, as time goes on, it’s not a drug that you may be able to reuse over and over. Or at least there might need to be a nice long break.  

What’s the Latest in Emerging Myeloma Research?

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What’s the Latest in Emerging Myeloma Research? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Benjamin Derman shares research updates from the 2022 American Society of Hematology (ASH) annual meeting, including information about newly approved CAR T-cell therapies and a bispecific antibody therapy, as well as research on the new target, GPRC5D (G protein-coupled receptor 5D).

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

Related Resources:

What Are Current Myeloma Treatment Approaches

 Understanding Myeloma Treatment Types

 What Emerging Myeloma Treatments Are Showing Promise

Transcript:

Katherine:

Joining me is Dr. Benjamin Derman. Dr. Derman, welcome. Would you please introduce yourself?  

Dr. Derman:

Yeah. Thanks so much for having me. As you said, my name is Ben Derman. I’m an assistant professor at the University of Chicago. And I specialize in actually, plasma cell disorders, which is mainly multiple myeloma, amyloidosis, Waldenstrom’s. If a plasma cell is the problem, then I address it. So, that’s what I do. And that’s my clinical and research focus as well.  

Katherine:

Excellent. Thank you so much for taking the time to join us today. Before we get into our discussion about available myeloma treatments, let’s talk about emerging therapies. And I know there are many. 

The American Society of Hematology or ASH annual meeting took place in December. What are some of the highlights from that meeting?  

Dr. Derman:

Yeah, ASH is always a very exciting time because it’s when we get to see all the latest and greatest of what’s on the way or what’s already here to stay.  

I think the biggest focus in the myeloma field, if I could really pin it down, was more in the later stages of the disease and focusing on treatments in that setting. We already have two FDA-approved chimeric antigen receptors, or CAR T-cell therapies, in Ide-cel (Abecma), and Cilta-cel (Carvykti). Those are the brand names. And then more recently, we just had a bispecific antibody, which is another type of immune therapy that was approved. But there are actually many under investigation.  

And so, at this ASH we heard a lot. Not only about the target that’s been most popular in this setting, which is something called BCMA or B-cell maturation antigen.  

That’s what the CAR T-cell therapies that I mentioned are going after and the teclistamab (Tecvayli) bispecific antibody that I mentioned.

But there are a lot of other candidate drugs that are also targeting that same molecule. So, we heard a little bit about – more about those. We’ve been hearing about them pretty much at every conference these days.  

So, there’s a lot of competition in that space. Which is good for patients because ultimately, what we’re trying to figure out is, is one of these better than the others? Or at least, if we have multiple options, there may be different side effect profiles that we have to think about.

But now as BCMA therapies are getting used more and more, one of the questions is, well, is there any other target that we could go after? And really, the one that was hot at ASH this year was something called GPRC5D, or G-protein coupled receptor 5D. This is expressed pretty strongly in myeloma cells, and not in many other tissues. Maybe the skin, nails, tongue. So, basically, that’s what you want, is you want a target that’s not going to be expressed elsewhere.

So, there were a couple of different types of therapies that were discussed. One was a CAR T-cell therapy going after GPRC5D, and the others were – there were two bispecific antibodies actually targeting the same GPRC5D. And that’s actually already in addition to another GPRC5D-directed bispecific that’s in development.

So, basically, the idea is that if patients may experience progression on one of these BCMA targeting agents, we’re going to have another target to be going after. And I think that part is really, really exciting.

And as far as other highlights, I think the other thing is, how do we reduce the toxicity from these drugs? And exploring avenues in order to be able to decrease sort of the inflammatory effects of these drugs, which are important.   

12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

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Staying current with healthcare news is essential for patient advocates. However, the sheer volume of information available can be overwhelming.  It can be challenging to sift through all the noise to find the most relevant and important news.

A healthcare newsletter or roundup can be really helpful here. Resources like these curate the most relevant and impactful healthcare news, usually by topic. They can help your readers stay informed about the latest scientific breakthroughs, research, and policy developments without having to spend hours scouring the internet for information.

With a well-crafted news roundup, you can build trust and credibility within your community, while also positioning yourself as a reliable source of healthcare news. In this post, I’ll share some best practices for creating a regular roundup of healthcare news that educates, informs, and inspires your readers.

1. Gather Your News

Before creating your roundup, you first need to gather the news. Throughout the week, make a note of healthcare stories you come across. It could be breaking news, new research, or policy changes. You can subscribe to Google Alerts to get notified when new articles are published on a specific topic.

2. Prioritize the Most Impactful Stories

With so much information available, it’s essential to be selective and focus on the most significant news stories. Pick three to five stories that are most relevant to your audience. It goes without saying that you should get your news from reputable sources. Whenever you use a source, evaluate it critically to make sure it’s reliable.

Carolyn Thomas, women’s health advocate and author at myheartsisters.org  shares this helpful tip:

“A specific online resource I regularly use is Retraction Watch, a site launched in 2010 under the auspices of the Centre for Scientific Integrity. RW has so far reported almost 25,000 scientific papers that have been retracted by journal editors – the majority due to authors’ scientific misconduct”.  Because I frequently cite emerging medical research and/or authors, it’s important to double-check that the studies have not been retracted, nor their authors discredited.”

3. Write a Summary

A concise summary explains what the story is about and why it matters. It should highlight the key points of each news item while providing context for people who are unfamiliar with it. In addition to statistics and quotes, summaries can include relevant quotes from experts and officials.

4. Categorize Based on Topic

Make it easier for readers to navigate your content by grouping news items by topic. Some common categories for healthcare news roundups are medical research, policy changes, technological advancements, and public health updates.

5. Stick To A Standard Format

Your roundup will be easier to navigate if you follow a standard structure. This can include including a headline, a concise summary, and a link to the original article for each story. By using a uniform layout, your readers will quickly become accustomed to your roundup’s format, making it more accessible and easier to digest

6. Link To The Original Source

Make sure to link to the original source of your news item. Readers can click on the links to read the full article if they want to know more. Seeing where the information comes from allows readers to assess the credibility of the source for themselves, so the roundup is transparent and credible. Don’t forget to check the links and make sure they go to relevant articles.

7. Set a Regular Publishing Schedule

Establish a regular publishing schedule for your roundup, such as weekly or bi-weekly. In this way, your readers will know when to expect your round-up and know they’re getting the most current information.

8. Include Visuals

Adding images to your roundup can make it more visually appealing and engaging. Select high-quality images that add value and are relevant to your content. Infographics and charts can be particularly effective at presenting statistical information, while video interviews can provide additional context. Additionally, visuals can increase the shareability of your content on social media platforms, helping to expand your reach and engagement with your audience.

9. Share On A Variety Of Platforms

Sharing your roundup on a variety of platforms is an effective way to reach a wider audience and increase engagement. Aside from promoting it on social media, post it on healthcare forums or discussion boards.  Additionally, consider sending it out in a newsletter or email blast to your subscribers.

10. Follow Up On Important Stories

Healthcare is a field that’s constantly evolving, so new developments can happen at any time. By following up on important stories, readers know they will get the most relevant and up-to-date information from you. When following up on stories, it’s important to provide context for readers who may not have read the previous roundup and to link back to any relevant content.

11. Encourage Reader Engagement

Create a sense of community by encouraging readers to leave comments and share their thoughts. You can do this by asking readers to share their thoughts, opinions, and experiences at the end of the round-up. It is also good to keep an eye on comments and respond so that a discussion can be facilitated and questions can be answered. Also, include social media share buttons on the post so readers can share it with their friends, increasing engagement and visibility. By encouraging reader engagement, you can create a more dynamic and interactive healthcare news roundup that is more likely to be shared and talked about.

12. Establishing Trust Through Consistency

This last tip comes from Terri Coutee, founder of DiepCFoundation.org, a non-profit organization that focuses on providing education, research, and support for patients who have undergone breast reconstruction surgery using DIEP flap procedures.

“Patient advocates often take on the role of curating content for a particular community. It is important to establish trust within a community by reporting consistently and with care and integrity. When you express interest in keeping a community updated on the latest evidence-based information, they count on you and look for new content. It is important to report accurately while at the same time understanding your reader and weaving skills of caring and compassion into your content. Establishing trust through consistency brings access to articles and information others may not seek on their own. You become their source of trusted information.”

By following the tips and best practices outlined in this post, you can curate the most relevant and impactful news stories while providing valuable context and insights for your readers. Your efforts will not only keep your audience informed and educated but also demonstrate your dedication and commitment to patient advocacy.

Emerging Novel Technologies and Therapies for MPN Care

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Emerging Novel Technologies and Therapies for MPN Care from Patient Empowerment Network on Vimeo. 

What emerging novel technologies and therapies are most exciting in MPN care? Watch as expert Dr. Joseph Sirintrapu shares his perspective about what he’s most excited about and his hopes for the future of implementing technology advancements.

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How Can MPN Patients Access Telemedicine

How Can MPN Patients Access Telemedicine? 

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

 What Are Risks and Rewards of Telemedicine in MPN Care

Transcript:

Lisa Hatfield:

So, Dr. Sirintrapun, we’re always looking for hope, we cancer patients. So what are some of the novel technologies and therapies that you’re most excited about?

Dr. Sirintrapun:

Oh my gosh. Let me just say that it’s great to be excited and I spend a lot of…what keeps me going is just being excited about things. But it’s also important not to be reckless. And I think for a lot of people that are in this technology thing, you see the balance between, well, you don’t even necessarily see the balance. They’re more excited and then you overstep. And so that’s really the guiding principle, excited but not too reckless to take things with caution to study, learn from things. And I really appreciate Dr. Palmer sharing that because she brought up a lot of different points. Like as you move forward, you have to consider X, Y, Z, I think a lot of the audiences heard that. That said, I’m excited about a lot and getting a little wonky with the technical things.

I’m excited about the mobile technologies, I don’t exactly know this is going to be somebody else more creative than myself about how do we incorporate that? These different biosensors, if heart rate’s important and that’s a side effect of a drug, how do you incorporate that into the healthcare information system? I’m going to put a little knock on the healthcare information systems or a little less technologically advanced is then what you see with the iWatch. I would argue that the stuff with iPhones is much more advanced to the dismay of many patients…maybe surprise of many patients. [laughter] We deal with some old technologies in healthcare. And so how do we incorporate these new technologies into this old ecosystem? But that said, there’s a lot of potential wearables, biosensors testing that could be close to point of care on the connectivity aspect with the 5G and stuff.

I don’t fully know all the 5G aspects, but think of the prior Gs that were there that allowed for GPS and all these different things that were not possible when you had 1G. Now we have 5G. Who knows what you could do. You can actually apply AI in real time before you would take 10 minutes to process it. Now it’s just happening somewhere at a cloud close by and it’s happening very quickly. You can imagine all that. So things like robotic surgeries can happen. Processing of immense data can happen very quickly. You can get your information without waiting a day or two weeks. So those things are very disruptive and I’m excited about that. I’m hoping that the players that are out there also keep the cautionary aspect that as you move forward, don’t jump too soon.

Try to learn things. Do not overpromise. Because it’s a thing for patients as well. I mean, many physicians don’t necessarily know they’re not, when you see something, they’re enamored by it. But the questions you should ask, is it ready? Has it been through the paces yet? Can I trust it enough? And that’s the part that… And I try to maintain it and I hope as people go and innovate that they don’t overpromise on things. Think the Theranos aspect, we could do all this X, Y, Z. That’s one lesson and there’s going to be more. Trust me, that’s not the end of it. Because as I mentioned, people tend to get excited, but it’s also very important to be cautious and not reckless. And I think that’s the lesson I would convey to anybody excited about this.

But there is a lot excitement, there’s a lot of potential people who think very smartly about it can think of all the different cautionaries of how to implement it because it’s all about the implementation. How do you make sure it’s ready and you can implement it correctly so that the people that are using it and people that have to interpret it and the people that it’s going to impact it all matches? It actually really is appropriate for that time that, that’s beyond just the technical. That’s why I said I…when I said informatics, it’s people processes. It’s not just the technology I wanted to focus on it, it’s the entire picture of things. And so that’s it. That’s kind of the way I sort of see us moving forward.

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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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How Did COVID-19 Impact MPN Treatment?

How Did COVID-19 Impact MPN Treatment?

 Emerging Novel Technologies and Therapies for MPN Care

 How Will Telemedicine Continue to Evolve?

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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What Role Does Technology Play in MPN Symptom Management?

 Emerging Novel Technologies and Therapies for MPN Care

 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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Related Resources:

What Does Informatics Mean for Cancer Care?

 How Will Telemedicine Continue to Evolve?

 Experts Share Best Practices for Telemedicine in MPN Care

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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Related Resources:

How Can MPN Patients Access Telemedicine

How Can MPN Patients Access Telemedicine?

 How Is Personalized Medicine in MPN Care Influenced by Telemedicine?

 What Are Risks and Rewards of Telemedicine in MPN Care

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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