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What Do MPN Patients Need to Know About COVID-19?

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Published on May 14, 2020

Key Takeaways

Are myeloproliferative neoplasm (MPN) patients more susceptible to COVID-19? Can your MPN medicine protect you? And what resources are available to help? In this program from our MPN Answers Now series, a panel of experts answers these questions and more.

Dr. Raajit Rampal, from Memorial Sloan Kettering Cancer Center, Dr. Srdan Verstovsek, from the University of Texas MD Anderson Cancer Center, Michelle Woehrle, Executive Director of the MPN Research Foundation, and Patient Power Co-Founder Andrew Schorr answer audience questions about COVID-19. They also share important updates, available resources and a resounding message of hope. Watch now to learn more.

This program is sponsored by Incyte. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.

 [Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

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Transcript | What Do MPN Patients Need to Know About COVID-19?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recorded on May 7, 2020

Andrew Schorr:
Greetings. It's Andrew Schorr in Southern California. Welcome to this program. Thank you to Incyte Corporation for being a sponsor in really what's the first in a series of programs that we're going to be doing called, MPN Answers Now. Our plan is to do it starting every two weeks at a specific time. So, stay tuned, be signed up on PatientPower.Info, and we will make sure you get alerts as we kick this off.

Today, we have some noted MPN experts with us, and also the leader of a wonderful group that provides resources for patients. Let's introduce our experts. Going to New York City at Memorial Sloan Kettering is Dr. Raajit Rampal, who's an MPN specialist and also a researcher. Dr. Rampal, thank you so much for being with us.

Dr. Rampal:
Pleasure to be here.

Andrew Schorr:
Okay. And then let's go to Houston, Texas, The University of Texas MD Anderson Cancer Center. A doctor who's been my doctor along the way, Dr. Srdan Verstovsek. Thank you for being with us, Serge, we really appreciate it.

Dr. Verstovsek:
Thank you, Andrew. Thank you all for having me today on this wonderful event.

Andrew Schorr:
Okay. And then again, a wonderful partner and let's bring in Michelle Woehrle, who's the Executive Director of the MPN Research Foundation in Chicago. So we've got Chicago, Houston, New York City and me, in Southern California.

First question to you Dr. Rampal. Being in New York City, where anybody who's watched the news knows that, that's been the initial ground zero for the COVID-19 virus, very seriously ill people among others, I mean a range of people. What is your experience with MPN patients who've developed COVID?

Dr. Rampal:
Yeah. Unfortunately, we've had quite a bit of experience with COVID in general, and particularly amongst our hematologic malignancies patients. We personally have had a small number MPN patients who have been affected by COVID-19. The outcomes, I think, have been variable, and patients' experiences have been variable, meaning that I've had patients who have been able to stay as outpatients and recover at home. We've also, unfortunately, had patients who've required ICU level care.

I think one of the things that's important to keep in mind in a discussion like this, particularly when we're dealing with small numbers of patients and the small experiences, that we have to keep in mind that patients have other co-morbidities. They have other conditions; cardiac conditions, pulmonary conditions. Those things we think, or at least the data suggests to us, those things contribute to how patients handle the virus. 

I think, certainly, we've had experience with MPN patients being infected. But I would say it's hard to draw conclusions about, "Do patients take one particular course when they do get sick?"

Andrew Schorr:
Okay. One follow-up question for you before we go to Dr. Verstovsek, among those patients, you may have had people on a JAK inhibitor. There's research going on now related to the JAK inhibitors and whether it can reduce the severity of the COVID-19 disease. Any anecdotal experience?

Dr. Rampal:

That's a great question, right? This is actually something that I've been talking with my MPN patients about, right? The fact that JAK inhibitors are now in Phase III trials for COVID-19 infections. That's owing to the idea that there is a massive cytokine storm that seems to occur during the course of the infection that we think, at least, is contributing to what happens in the lungs. And so, of course, the JAK inhibitors are wonderful drugs to inhibit cytokines.

What I will say is that amongst several patients who I have had who've had COVID-19 infection, several of those were on JAK inhibitors and actually didn't, I wouldn't say had an easy course, but they were able to recover at home. Now whether that means that's due to the JAK inhibitor or for other reasons, it's hard to tell, but the outcomes were favorable.

Andrew Schorr:
Okay. Dr. Verstovsek, what is your experience there in Houston, where the number of cases are going up in Texas? And also, your comment, I mean, you've been a chief investigator related to JAK inhibitors, et cetera. So both those areas, we asked Dr. Rampal about.

Dr. Verstovsek:
We have been fortunate so far not to have so many cases of infections in our patients here in the MD Anderson Cancer Center. The general population in Texas has not been affected so much as in New York City. We hope to maintain that control to reasonable levels for a time being.

Now, there were cases, however, and the questions about what to do and what type of patients are at risk come around even without having too many patients actually infected, because we all worry about this, right? We worry.

Are myeloproliferative neoplasm patients more susceptible to acquiring the COVID-19? I would say if you are an older patient with co-morbidities, that is already a given because you have co-morbidities and the age counts. And if you have advanced myelofibrosis, which is known to affect the immune system to some degree, and unfortunately I cannot really scale it to say, "On a scale from 0 to 10 to what degree." We would say that patients with advanced myelofibrosis may be more prone to acquire infection than patients with ET or PV or general population. So we are very cautious in advising to follow everybody, to follow what the regulations are on a protective way of conducting your business, family and not to be lack on those regulations.

But the issue of the JAK inhibitor is a good one. Because we know from the past, the JAK inhibitors predispose patients to acquire infections, viral infections. You would say, "Well, that's not maybe good, because COVID is a viral infection." On the other hand, as it was very well explained, it might actually decrease when it is given to patients with infection, inflammation that affects the lungs.

Our strategy is, and that has been endorsed by the American Society of Hematology, not to change the therapy or prevent patients from receiving therapy if it's necessary because of potential risk. Because it might be risk, it might be a good pathway to minimize the side effects of infection. In terms of management, we do not change our management of patients because of the risk of infection.

Andrew Schorr:
Okay. Michelle, we're going to get to you in a minute as we start talking about support to people. I think we'll just say, you have a lot to say related to financial support for people who may be struggling in this time of higher unemployment, and also people connected with specialists such as these gentlemen. You have a lot to offer, correct?

Michelle Woehrle:
Yes. That is true. We have multiple resources for patients. We have them on our website all the time at mpnrf.org. We also have a special page just for COVID resources, mpnrf.org/covid19, where we offer links to credible information and FAQ from Dr. Robyn Scherber, and any other information patients might need.

There's also a place for them to apply for financial assistance from either the organization NORD or The Leukemia & Lymphoma Society for people who maybe have lost their jobs and don't have income. There's immediate cash assistance for them. If they have any questions about it, our staff are very happy to walk them through whatever we can do to help them.

Andrew Schorr:
Wow. Thank you. You're a great organization, great partner of Patient Power’s. Dr. Rampal, we talked about JAK inhibitors. Some patients are on interferon and wondered about that. Is interferon helpful? Or not helpful? Just talk about that for a minute.

Dr. Rampal:
Yeah, that's a great question. That's a topic that comes up repeatedly with our patients. I think at the end of the day, we don't know the answer to that, right? I think that we don't have enough data gathered from experience of patients who are on interferon and who've had COVID-19 infection to know whether or not it may change the outcome in either a positive or negative way.

I think to echo Dr. Verstovsek’s comments earlier, the guidelines that have been put into place by the American Society of Hematology as well as other collections of hematologists from around the country have all supported the idea that we should continue treatments as has been recommended in the pre-COVID era. Meaning that we shouldn't modify treatment just because of COVID, but rather I think the important thing is to emphasize to our patients to take protective measures, particularly those who are at more advanced disease, but I think also patients who are on active treatment. I think the principles should still apply that we want to maximize our protective and precautionary measures and minimize our exposures. But it is, it's a difficult question to answer whether or not interferon, specifically, are going to modify a patient's course if they are infected with COVID-19.

Andrew Schorr:
All right. A follow-up question for you, sir. Some patients need to come in for phlebotomy, right?

Dr. Rampal:
Mm-hmm.

Andrew Schorr:
There you are in New York City. People maybe normally would come to Memorial Sloan Kettering from far and wide. But you've had a real hotspot of the disease. People are saying, "Oh, my God. I know I'm scheduled for phlebotomy. Can MSK take precautions for me so that I can get what I need?"

Dr. Rampal:
What we have done is now put in very stringent measures at all of our facilities. Whereby, patients walk in, they are assessed for symptoms. If they have symptoms, they are immediately screened and told to come back after they've had a COVID swab, which we perform here. Everybody's given a mask, and everybody is isolated if they have any potential symptoms. We've also done things like restricting the number of people who get into elevators.

Now we're at a point, here at least, where we can begin to follow our guidelines as they were before. Meaning that we can get the blood counts more frequently, because we have all these precautionary measures in place. But it's been a very steep learning curve is what I would say.

Andrew Schorr:
Michelle, let me ask you. The name of your organization is the MPN Research Foundation. Bob Rosen, who founded it, it was all about research towards a cure. A big concern for you is whether these gentlemen, as researchers, and their peers can continue to move forward even now, right? Where do we stand with that?

Michelle Woehrle:
We're keeping in really close contact with all the researchers we're funding now and just taking it day-by-day. We're still making our grant payments to them and finding out how they're doing. I think, and I cannot speak to what Srdan and Raajit are doing, but we've heard that many of them are now having some time to work on writing and publishing and a little bit away from the lab. So it's a different form of work, but there's still productivity.

I will say, this is not specifically only related to MPN, but I've been on some calls with NCI. They had a Zoom meeting for, I think, their advisory council that they allowed the public to listen into. What I was hearing was that there was really amazing collaborative work going on across borders. What that makes me feel is hopeful. Once we're past this COVID crisis, we're going to hopefully be able to tap into that cooperative ethic that is being developed because of this crisis. That's how I come away with it. Once we get through this, we're going to have, to Srdan's point, a whole new normal. We're going to have a different way of doing all sorts of things, including MPN research.

Andrew Schorr:
 Dr. Rampal, there are some patients that get transfusions for an MPN and worry is the blood supply clean? I mean we hear about how the virus is transmitted, but still if you're getting somebody's blood, you worry. Maybe you could just speak to that.

Dr. Rampal:
Yeah. I think that that's a very fair question and a concern that's been raised by I think physicians and patients alike. To date, there hasn't been any evidence of bloodborne transmission of COVID-19. Donors are, of course, screened carefully for symptoms. Is that foolproof? No. I think that going forward that things are getting better in the sense that now we have more widespread testing, right?

In the early days of the pandemic, could every potential blood donor be screened? No. They were screened for symptoms. But now we can actually screen people by doing testing. I don't think we've had any reports of suspected transmission that I'm aware of. I think at this point, the blood supply is safe.

Relatedly though, I think that the other topic that goes along with that is are we getting enough blood donations? Because, of course, plenty of our patients are transfusion-dependent not only for red cells but also the platelets. That had been a major concern. We did see blood donations drop off. So far, I don't think that there have been any real challenges to the blood supply. But certainly I think, that is something that's in the back of everybody's mind.

Andrew Schorr:
Okay. We talked about research and where that's headed. Let's go to the other end of the scale. There are a lot of people with ET and PV, and they worry about various bleeding issues, clotting, all these kinds of things like that. I'm not sure I understand completely, but there's very recent data coming out about blood thinners related to COVID. I don't know if either one of you, Serge, if you know where does this research about blood thinners come in related to maybe some of your MPN patients?

Dr. Verstovsek:
Yeah. There is a thrombosis. Meant it to say, there is a concern that thrombosis is associated with the end stage of the COVID infection. When the patients are in ICU or intubated, and where the things are not really working well, multi-organ failure. That one of the major complications why people die is thrombotic event. And actually it relates very well to what we were talking about before of utilizing medications that are in place, rather interferon or anagrelide (Agrylin) or hydroxyurea (Hydrea) in each of a previous setting and not compromise on the delivery of effective therapy.

Quite contrary, the modifications are not asked for, because it is best for the patients with MPN to have very real control of the disease. To constantly control the thrombotic risk that is inherited from the disease itself, ET or PV should be minimized. God forbid the patient gets infected, and then there's this increased risk of thrombosis. In an uncontrolled setting, it's going to just get worse. So we advise patients to stay on the therapies, not to modify, and to do everything possible to optimize their therapy and be compliant with the therapy, not worried about it, whether it's going to cause any side effects. Because at the end, God forbid in difficult situations, that may be good for them to be in such a situation.

But specifically, when you say that this concern has come up, thrombosis may require a different mode of anti-thrombotic therapy or anti-coagulation therapy in difficult cases in ICU on respirators. Changing from some patients who are on aspirin or pills, anti-coagulation to low molecular weight heparin to make the blood flow easier in ICU patients with multi-organ failure in the critical situations. This is not something to utilize in everyday management or for prevention or prophylaxes. This is only in critical settings in the hospitals.

Andrew Schorr:
Okay. I want to ask. We're in this age of telemedicine, Dr. Rampal. And so, one of the things that comes up for people is the weird effect sometimes of living with an MPN, particularly ET. A lot of people diagnosed and say, "Gee, is this related to the ET?" And then also try and understand could this be some precursor or early development of the virus? When I say telemedicine, is that the time to contact your clinic where they talk with you or your nurse, try to sort it out, because the patient's worried and doesn't know what to make of it or what to do about it.

Dr. Rampal:
That's a great question. I think at least, personally, I would rather know more from a patient than less, right? If there is a concern, if there is a worry, part of the reason that they're in our care, in centers of expertise is because we can address these questions, right? And so I would advocate that the answer's absolutely, "Yes." If a patient is concerned, if they think their symptoms—they don't know if their symptoms are ET or could this be an evolving infection, absolutely you should talk to your care team.

Andrew Schorr:
What are the symptoms that you would worry, with your experience with COVID and MPN patients, what are the things where you would suspect COVID? Are they any different in MPN patients than everybody else?

Dr. Rampal:
Yeah. There's no literature that I'm aware of on that topic. My personal experience is that the patients that I've had with MPN and COVID have had the "typical" symptoms. Those really comprise cough, which is usually not productive, shortness of breath, fever, occasionally skin rashes have been noted as well. But those are the very typical symptoms that have been widely reported. Those are the symptoms I've seen across all of my patients and also my MPN patients as well.

Andrew Schorr:
Okay. Michelle, you get calls, and your whole team gets calls. Are we covering the things that people have been asking? Or if there are some other questions that we should pose to the doctors? I'd love you to chime in here.

Michelle Woehrle:
Oh, you bet. You hit a lot of the points. The number one question I get from people is, "Does my MPN leave me more susceptible?" And that, of course, was covered.

The other thing I just want to offer is a comment to the telemedicine. This is something that has come up a lot too in my conversations with people. They've shared their experiences with telemedicine.

One woman, I spoke to yesterday, she actually had a phlebotomist visit her home. And it apparently was a service that she could've had access to previously had she asked, but she got a new hematologist and they suggested it to her.

It made me aware that maybe patients were not always asking for what they might need. In this situation of telemedicine, it's a great time for people living with an MPN to really empower themselves and say, "How can I do this in a way that feels comfortable?" Certainly let their doctors know what they're going through. And since there are patients who are on this program, they should really hear that Dr. Verstovsek and Dr. Rampal want to hear from them. So they should feel empowered and encouraged to not be shy and ask for what they need.

Andrew Schorr:
Dr. Rampal, is this the time or not the time to change therapy?

Dr. Rampal:
Yeah. It's an interesting question, right? Because to me, it's not so much about the medications per se, but it's more about the monitoring. So, for example, if we were to take somebody who has polycythemia off of hydroxyurea and switch them to ruxolitinib (Jakafi), would we potentially have to get more frequent blood counts in the beginning as we change medications? Absolutely, that's entirely possible. That is a concern, right? Because again, one of the principles here is the exposure to the healthcare system.

Now again, things have changed recently, and I think our precautionary measures at our healthcare facilities have been stepped up dramatically. I have much more confidence now that we are adequately screening everybody who walks through the doors. I think, at the end of the day, the answer is that it depends. If we really think it's medically necessary to switch a therapy, then we should do that.

Andrew Schorr:
Dr. Verstovsek, the big gun in myelofibrosis has been transplant. I know some of your patients who've received it. What about if you've been preparing somebody for a transplant, does that go forward now?

Dr. Verstovsek:
In general, unless it's absolutely necessary, which is usually not the case, we would be delaying a transplant until the situation has become even better. The availability of the testing, widespread testing, which in some areas of the United States perhaps is not very optimal as of yet, will help us engage patients in a transplant much faster than it is now. And the same to extend the discussion, applies to the engagement of the patients in the clinical studies with normal medications.

This is something that Dr. Rampal has mentioned already that if the therapy's absolutely necessary, yes, we will be changing from one standard to another standard. But engagement in investigational studies, they require a lot of monitoring, a lot of traveling or visits. Or engagements in the transplant, we tend to postpone these for a length of time in a month or two, once the situation is much clearer and the availability of testing and monitoring of everybody involved, not just the patient, is improved and optimized so that we don't have unnecessary complications either with the investigational agent or with the transplant itself.

Andrew Schorr:
Dr. Rampal, most of us, maybe all of us have had bone marrow biopsies. If we were changing therapies, you might want a bone marrow biopsy. We talked about transfusions and phlebotomy. Would the same be true about proceeding with a bone marrow biopsy?

Dr. Rampal:
Yeah. I think so, absolutely. The risk there is to some degree a little bit greater, because you are in close contact with somebody less than six feet for a period of time that could be 15 minutes to maybe 30 minutes depending. So our approach has been to only proceed with a bone marrow examination if we think it's going to change our management. And if it's not, and we think it's not likely to yield information that would modify our therapy or modify the patient's prognosis, we've been delaying that.

That also plays into clinical trials, right? Because many of our clinical trials have bone marrow biopsies as part of the assessments. We have been delaying those or canceling those. The IRBs have been very lenient in this situation to allow us to deviate from what we would normally do for study assessments. I think that, as with other testing, we've been trying to reduce the frequency of that.

Andrew Schorr:
Just a couple more things. Dr. Verstovsek, you grew up in Europe. Both of you gentlemen are connected with MPN specialists around the world. Michelle alluded to this, more broadly in cancer, she was talking about the NCI and feeling that with COVID there was collaboration. Do you feel with MPNs, maybe MPNs and COVID data and MPNs in general now, there is really strong collaboration to move things forward in research and also, understand how the virus affects MPN patients?

Dr. Verstovsek:
Oh, absolutely. Absolutely. It was a tragedy to see what was happening in Italy and then Spain and then France, and is now happening in New York or in other parts of the United States. But we have learned and we have made those bonds even stronger with our colleagues in Italy or Spain or France where unfortunately they had this tragedy where they learned from their own experience how things evolve in our patients. And therefore, understanding of management, and some of these recovered, like thrombosis risk, or do you change a therapy, or do you stop the therapy? We have those answers many times from the evidence in the field from those experiences in European countries where we engage very closely to understand exactly the nature of the beast, if you like, because this is really an amazing pandemic that affects us all.

And some of this is translated in the guidelines that we have. It comes from the firsthand evidence. The American Society of Hematology guidelines that are online for everybody to read are actually a product of international efforts. I mean half of the articles are from Europe to understand exactly what needs to be done, what happened and to prevent things from happening again.

Andrew Schorr:
Both of you gentlemen are scientists as well as clinicians. From where you sit, do you feel that we'll be able to solve this? I know people are working around the world. When your MPN patients come in and say, "Oh, my God. How are we going to get past this and move forward?" What do you feel as a scientist?

Dr. Rampal:
What does my scientific self say about that? I think that the understanding of this virus, what we've learned in a short period of time is amazing. I mean the structure of the genome, the structure of the virus; these types of viruses have been under study for years, the coronaviruses in general. We've started with a reasonably good fund of knowledge in terms of this type of virus.

The thing that we're fortunate to have is an arsenal of tools, right? In the press, there's been some comments about remdesivir (GS-5734), which has shown some promise. I mean these are off-the-shelf drugs that have been thrown in and tested. And at least, remdesivir have shown some promise. So I think we're going to be able to come up with better treatments. Clinical trials are the key, as they are with MPNs, and there are an abundant number of clinical trials that are testing different strategies around the world. I think that is very promising.

The second thing is the vaccine. We're talking about compressing the timeline of what was roughly 10 years into under a year, maybe 18 months. We have already Phase I trials of several vaccines in place. This is an unprecedented pace that we've seen. It remains to be seen if any of the vaccines being tested currently are going to be effective, but that is what gives me optimism from a scientific standpoint. We're not talking about ideas on the drawing board. We're talking about ideas that are in clinical study already.

Andrew Schorr:
Just one quick follow-up. When you talk about vaccines, is there any reason to think that anything about an MPN patient's immune system will limit the effectiveness? Or we just don't know?

Dr. Rampal:
I think in general, we don't know. I'm not aware that, for example, other vaccinations like influenza or whatnot have been demonstrated widely to not be as effective in MPN patients. We probably don't know the answer to that. But I don't have a strong reason to believe that, that would be true.

Andrew Schorr:
Thank you. You guys and your nurses and your lab people and all the people up and down your hospitals, you are our angels. So thank you for being with us. Raajit Rampal and Serge Verstovsek, thank you so much for being with us.

I'm going to get a final comment from Michelle. Michelle, you are watching all this, you get the calls, you have research money, and you're trying to move things forward. What do you want to underscore for people watching so that we can have hope?

Michelle Woehrle:
It's some of what we've already said today, which is that some of the ways that the world is working right now to fight COVID, are going to be applicable hopefully for other diseases like MPN. We have been in the trenches funding research and trying to understand how we could do our part as advocates to support the work of Dr. Verstovsek and Rampal and all the global MPN researchers. I just get excited about tapping into these new ways of looking at the world and how quickly trials are being put up there, and how is that going to positively impact the people living with an MPN.

In all the terrible headlines that we're seeing, what I come away with is still a persistent dose of hope. I hope that the people who are watching this, who are living with an MPN, can feel that as well.

Andrew Schorr:
Right. Thank you for all you do. You're an angel as well, and your organization, the MPN Research Foundation. Folks, please go to the website and also the COVID section of the MPN Research Foundation. Michelle and I are working on where we'll do an ongoing series, MPN Answers Now programs where you can ask questions like we've covered today with leading experts.

We'll let you all go. Thank you so much for being with us. Michelle Woehrle with the MPN Research Foundation, Dr. Srdan Verstovsek at University of Texas MD Anderson Cancer Center in Houston, Dr. Raajit Rampal, Memorial Sloan Kettering in New York City. Thank you so much.

All right. I'm going to go on and just mention a couple of things. Please send in your questions. You've got a couple of easy ways to do it. No matter what it is, you can send it to comments@patientpower.info. But always you can send it to mpn@patientpower.info. We see all of those. We welcome your questions. We welcome your suggestions.

We will be doing this ongoing series, MPN Answers Now. And then we'll come up with a convenient time for you. And then every two weeks, boom. We want to thank Incyte for being one of the supporters of that series and their commitment to you. We'll see what happens with the JAK inhibitors and how that plays out in all the trials that are going on for the coronavirus, COVID-19. Thank you so much for being with us. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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