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Coronavirus and MPN Internet Myths

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Published on April 15, 2020

Key Takeaways

  • There are clinical trials looking at the potential of some cancer drugs to treat the cytokine storms caused by COVID-19.
  • Many appointments are being converted to virtual visits. But if you're feeling different or worse, you may need to be seen. Don't put off things that you would typically call your doctor about.
  • If infected, it’s important for MPN patients to explain that you have an underlying condition that makes you vulnerable to clotting.

Unfortunately, a lot of misinformation about the novel coronavirus is circulating online. We decided to check in with leading experts Dr. Laura Michaelis, from the Medical College of Wisconsin, and Dr. Joseph Scandura, from Weill Cornell Medicine, to set the record straight for myeloproliferative neoplasm patients; what’s true, what’s false and what we just don’t know yet. 

The experts discuss ways doctors are working to address the needs of patients and the needs of the community. Watch as they give updates on MPN care during the pandemic, COVID-19 research and more.

[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 | Coronavirus and MPN Internet Myths

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 April 13, 2020

Andrew Schorr:
Greetings from Southern California; Carlsbad, California, actually. Today is, I’ve got to keep up with the date, April 13th. I'm Andrew Schorr with Patient Power. Thank you for joining us live for this webinar on the latest related to myeloproliferative neoplasms, MPNs. I have one, myelofibrosis, since 2011. Joining us are two leading experts to take your questions. Let's see if we can get them on. There is Dr. Joseph Scandura from Weill Cornell Medicine in New York City, certainly a hot spot for COVID-19. And, Dr. Laura Michaelis, and Laura's in Milwaukee. I'm going to let them give you their title. Laura also explain your position with the American Society of Hematology, too. Laura, let's start with you.

Dr. Michaelis:

I'm an associate professor of medicine here at the Medical College of Wisconsin where I treat patients with myeloproliferative neoplasms and other forms of leukemia, acute leukemias and chronic leukemias. Also, I'm lucky enough to be pretty heavily involved with the American Society of Hematology. I'm editor-in-chief of The Hematologist. I've been working on their website and some of their COVID responses, which has been a real satisfying endeavor.

Andrew Schorr:
So you have an overview both what's going on really worldwide, too, so we'll talk about that. Dr. Scandura, tell us where you are and your role particularly related to MPNs.

Dr. Scandura:
Hi, I'm at Weill Cornell Medicine. I'm also associate professor of medicine. Here I serve a couple different roles. One clinically is in scientific director of the Silver Myeloproliferative Disease Center, and I run a lab that studies really a range from basic hematopoiesis, the study of blood formation, hematopoietic stem cell biology up through clinical and translational work related to myeloproliferative neoplasms.

Andrew Schorr:

You are, as I said, in a hot spot in New York City, and so you're called upon and your colleagues in the hematology area are treating patients with COVID. I think you were telling me just before the broadcast that your group is seeing maybe 10 to 12 MPN patients who are diagnosed with coronavirus.

Dr. Scandura:

Yeah. I think we've been trying to keep close tabs on all of our patients during this time, obviously, coming into the medical center right now unless there is an absolute need for doing so. We are trying to keep everybody at arm's length or more appropriately at Zoom's length but to keep tabs on people on how they're doing and test results and even people who are sick with a disease that seems very much like COVID-19 although maybe not test-proven. I know Dr. Ellen Ritchie, my colleague who's an outstanding clinician, has on every day been polling our patients on how they're doing, trying to keep tabs so that we can keep them out of the hospital but if need be bring them in.

Andrew Schorr:
Laura, you're looking at not just what you're doing in Milwaukee, but you're interviewing and talking to specialists around the world. That's the effort now is to try to get data related in this case to MPN patients, maybe other leukemia patients, too, but that has to emerge. We don't really have that yet, right?

Dr. Michaelis:
Right. One of the things the American Society of Hematology has done as well as the American Society of Clinical Oncology, for example, with regard to solid tumors, is establish registries so that every time I see a patient or Joe sees a patient that has both COVID and a given disease we can put it in a central registry. That allows us to aggregate large amounts of data not just from around the country but even from around the world: “How do subtypes of patients behave? What does it mean if you have myelofibrosis and COVID? What does it mean if you have pulmonary hypertension and COVID?” Because those are incredibly important questions that we just don't know the answers to.

Andrew Schorr:
Well, I just want to mention to our folks, if you have a question now, send it in. My colleague and partner for so many years, Esther Schorr, gets the questions. Just use that Q&A button at the bottom of the Zoom screen. So you click on it. Send a question, not too personal I hope, to Esther, and then we'll be going through it. But we got a whole bunch already. Joe, for you, I think this is the one that I think so many of us, particularly ones who maybe are taking a JAK inhibitor for polycythemia vera or myelofibrosis like me, wonder, and that is Joelle said, "I have read that there is currently a stage three clinical trial for Jakafi or ruxolitinib, outside the U.S. as a possible treatment for the cytokine storm which appears to be the killer complication from COVID-19.” Joe, could you comment on that?

Dr. Scandura:

There have been a couple commentaries published in The Lancet and some other journals on the potential for these agents to choke off the cytokine storm or this cytokine release syndrome that can go along with clinical deterioration. By virtue, it's one of the blessings of working at an academic medical center is you have a lot of very interested and active and smart and well-informed colleagues. About three weeks ago, I got an email from one of my heart failure associates who said, "Isn't there something we could do for this cytokine storm? It's terrible. People are just kind of crumping. I actually was really busy that morning and saw the email about five hours after it came through, and I read it. I said, "Yeah, what about ruxolitinib? That's a pretty good drug for this sort of thing."
 
I reached out to Incyte that afternoon. They were really terrific in terms of responding and being very proactive, and so they agreed to try to support a clinical development. They worked with Novartis in terms of opening and designing a Phase III randomized study that they're working on. I think it's not yet ready but hopefully by the end of the month. They also agreed to support us in terms of opening a study on ruxolitinib in our patients with COVID-19. This isn't an MPN study. This is across the board of hospitalized patients. There are no results yet. We're not open yet. They're not open yet. But everything is moving at a pace that I've never seen in my career in terms of as a clinical trial list.
 
Just as an example, from that phone call to Incyte, they said, "Well, just submit an LOI, a letter of intent." So to go from a conversation to a letter of intent usually is a fair amount of work. They said, "Just put in what you have." So I put it in that afternoon. Frankly, there were a lot of parts where I said, "The details," I said, "see attached," and I attached nothing. They approved it the next day, the LOI. That day without me reaching out, they reached out to our lawyers, and we had a CDA in place in 72 hours. I know probably Laura knows what a miraculous speed. It's like the Flash. It doesn't happen. That's three months of activity. So everybody, I think, is very motivated to do something. I think there's a strong rationale here. Again, the only way we know whether this is beneficial is going to be through a clinical trial and really with the best information coming from a randomized study. Randomization is going to be two to one, so we're at least giving two-thirds of the people a chance at something different.

Andrew Schorr:
Laura, so I have a question a Milwaukee patient might ask you based on what Dr. Scandura just said, “If I'm already on a JAK inhibitor whether it's ruxolitinib or maybe another approval, and I happen to be on fedratinib (Inrebic), but a JAK inhibitor, would that offer me some protection against the serious complications of COVID, the cytokine storm if I'm already on one of these medicines?” I know what you're going to say but please say it.

Dr. Michaelis:
We don't actually know yet. This is an incredibly important area to gather data. Dr. Scandura is right that there is other evidence to support that anti-inflammatories, not nonsteroidals, but things that we use in other conditions of cytokine storm have shown some early benefit. This is something that we have to study. If we can't study it in the form of a trial, like has been designed in the ruxolitinib, then one way to study is to make sure that patients that are on ruxolitinib or fedratinib and get COVID are studied. That's another reason why this registry is an important endeavor.
 
One of the things I want to point out, though, is at the time of crisis is not a time to abandon first principles. That means that we do not know if something works unless we have a good trial that compares it to something else. That's why doing novel treatments in the setting of a controlled trial is really important. We do not want to cause harm. Sometimes people rush through things and promote interventions that may cause more harm than good. That's one of the things that as a community we have to be careful about and stick with our first principles.

Andrew Schorr:
Joe, you mentioned that, obviously in New York City, you have high density and more cases than anywhere else, and so among them are MPN patients. Is there anything, though, that you're noticing about risk of MPN patients developing COVID? Is there any sense of that, or they're just in the mix of everybody else?

Dr. Scandura:
The short answer is there's no good data. It's apocryphal, the stories, and what I'm talking about is observations based on what is a relatively small number of patients, and so I don't want to have it overinterpreted. What we have seen is that a number of our patients have been infected, tested positive. A larger set have symptoms that are certainly consistent with what we see with people who are COVID-19-positive. They run the spectrum in terms of how well they do and how sick they get. I don't think anybody can comment on those people with very mild symptoms that never come to clinical attention, so we are necessarily biased to the sicker subset of people, because those are the ones who call us or we call them, and they report something.
 
But we have found that the more frail the patient, the more problematic it is when they become sick. That's, I think, relatively obvious from a precept standpoint, but it does seem to be borne out, so advanced myelofibrosis, people very symptomatic have been among the ones who have done least well. Whereas the minimally symptomatic or somebody with well-controlled CML, minimally symptomatic ET with little or no therapy tend to be more like the general population in terms of numbers.

Dr. Michaelis:

We do know that there are some conditions that go along with myelofibrosis that might cooperate with this. We do know that patients with this condition, their coagulation system, their likelihood of bleeding or clotting can become quite dysfunctional. We also know that that's a condition that many patients with MPNs start with, and so that can be a cooperative problem. We also know that there are complications in the lungs, of course, because when the virus gets into the lungs and starts replicating, it can cause damage, and then there's inflammation that's responding to that damage. In a patient who already has lung problems, like in pulmonary hypertension which can sometimes go along with myelofibrosis, that might be, again, a cooperative problem. This would be based on theory, though, like we've talked about. We don't have hard evidence of what characteristics in particular that go along with MPNs might make the disease worse.

Andrew Schorr:
We got a lot of questions about that, people with pulmonary hypertension, a variety of things. Here's a question we got from Steven who says he's 76. He's had PV for five years. He's been having aspirin and phlebotomies, and he's now quite anemic with the major symptom being breathing difficulty. His question was, Joe, maybe you could answer this, "Does the anemia put me at greater risk for complications from COVID-19?"

Dr. Scandura:

Of course, it's a matter of degrees and how anemic he is and what the state of his lungs and other health condition is. I would say mild anemia is not something that seems to be shaking out as an important measure, but we do find a number of patients can have lowering of the platelet count, can have low lymphocyte count as something that's relatively common. And then the neutrophil count is kind of all over the board in terms of some patients coming in low and some people coming in very high. I think that that's something that's related to the cytokine release syndrome at least partially.
 
The clotting issue is one that is definitely very, very common, I would say, near universal of hospitalized patients with COVID-19. I actually spoke to Dr. Ghaith Abu-Zeinah who is one our junior faculty here who's been admitting most nights, and essentially everybody he admits has abnormal D-dimer, which is this measure of fibrin, this sort of clot breakdown which goes along with the clotting event. So the anemia itself, unless it's very severe, I don't think is an independent measure, but it depends a little bit on the other aspects of your health whether or not that is important, for instance, cardiovascular disease, lung disease independently. It may be an exacerbating factor.

Andrew Schorr:
Laura, here's a question I think is related came from up the road above you in Ontario, Canada. Patty writes in, "Do you often see MPN patients specifically with PV who are JAK2-positive but also positive for something called Factor V Leiden?" Maybe you can describe what that is. "Does that combination increase the risk factor for not doing well with COVID-19?"

Dr. Michaelis:
You can definitely see folks that have both an underlying clotting disorder, like Factor V Leiden, which is actually not that unusual, and then develop an acquired problem. So, Factor V Leiden is something you're generally born with, and then myeloproliferative neoplasm like ET that gets layered on top when that develops over the course of time in your blood cells. Those two might increase your risk of clotting and so your doctor should talk about that with you.
 
Again, we do not know what that means when somebody then develops COVID-19 or is infected with the coronavirus, but we do know that even people without underlying clotting disorders, without a congenital problem can have an significantly increased risk of clotting and/or bleeding, this kind of dysregulation with COVID. That's probably because the—well, I can't even hypothesize as to why it is, but it is reported in many, many, many hospitalized patients. So it would be very important if you got infected to make sure that people know, "Look, I already have an underlying clotting disorder. I already have a disease that makes me vulnerable to clot."

Andrew Schorr:
Dr. Scandura, Joe, and I think you're muted there, Joe, but here's what I wanted to ask you. This question just came in. So some people are on interferon, peginterferons, and they want to know can being on an interferon make more severe symptoms less likely? Now maybe that's theoretical or not but tell us what you think about interferon in COVID.

Dr. Scandura:

Interferons were, of course, discovered as part of your body's response to viral infections, so they are a normal part of your immune response to viruses with the idea being that they are there to help prevent the viral replication or to help your immune system sculpt an immune response. That said, viruses often have developed ways to escape immune responses including interferon. They can actually turn off interferon signaling intracellularly, and coronaviruses do have the capability of turning off certain types of interferon signaling. So it's an open question. Obviously, we don't have any data set with which to answer that.
 
Theoretically, interferons could be beneficial both in terms of limiting the extent of infection and maybe even in some ways dampening some parts of the immune response, but there's absolutely no data. I know there is a registry. Dr. Hans Hasselbalch is trying to collect information from patients who are known to be infected who are on interferons and to see how they have fared. I can say anecdotally the patients that we have who are on interferons we've had some that have become infected, and we've had them linger on but not been hospitalized, but that's true for every other treatment as well. So whether or not there's any signal there I can make no comment.

Andrew Schorr:
Laura, so let's talk about treatments that are sort of more invasive, if you will, and that would be transfusions or phlebotomy. What are you telling your patients? Maybe it's different in New York than Milwaukee right now, so that would be interesting. But should they come? They've been getting transfusions. They've been getting phlebotomy. What now?

Dr. Michaelis:
A couple of points to make. First off, we've been, like everybody, trying to convert as many patients to what we call virtual visits as we can. That means we'll sometimes just see them in a Zoom call or something like this or sometimes over the phone. Many patients I'm still trying to have get labs even if they don't come to Milwaukee for their labs. They could get labs locally, and then we'll have that kind of data.
 
For patients who need transfusions, it's been important to reassure them as best I can that there's no evidence that COVID is transmitted via a blood transfusion. We don't know that. We're not testing the blood supply for COVID. But if you go to give blood, you're not allowed to give blood if you've had any cold or symptoms or fever, and they do a pretty healthy screen of it. I am having people, if they need phlebotomies, maybe we'll be a little bit looser on the categories or the thresholds if it means being able to keep people at home for a little while longer.
 
The problem is that, as somebody told me the other day, COVID didn't cancel cancer, and so there are still people that need treatments. I try and emphasize especially in the hospital or in our clinics we are being incredibly good about cohorting people. You're not going to be in the same waiting room as somebody who's actively infected. Our prevalence, at least in Milwaukee, is such that we can still do that. So if you need help from your doctor, if you're feeling new or different, if you are worse, you still need to get seen sometimes. So please don't put off things that you would otherwise call your doctor about. If it can't be managed over the phone, we can try and manage it in-person.

Andrew Schorr:
Dr. Scandura, you're in New York City. We have many more cases. You're in a huge hospital. What about there? Is the message any different?

Dr. Scandura:
I think it's more similar than different. Maybe the scale differs a little bit in terms of the numbers of people. Our hospital, obviously, is an area where I would say the emergency room—I was on the other night. The emergency room was monomorphic, meaning that normally you see so many different types of reasons why people are there. I was keeping an eye on the list. It's all variations of the same thing: viral infection, pneumonia, fever, COVID suspect, COVID proven. They're all the same patient, and 90 percent, 95 percent of the people were in one of those categories. It's really unprecedented in my life. The hospital has more or less moved that way as well.
 
But people still do get sick from other things. We're diverting a lot of patients to other centers, but obviously, somebody who has their cancer care here, we want to take them here. It's a matter of where and what they're coming for. Is it something that they need their physicians here for, or is it something that can be treated closer to home at a hospital that's not such a high risk for transmission?
 
Our outpatient has changed dramatically. We have gone through a lot of—this is one of those where we get these announcements and emails, and they are to all faculty. I personally almost never read them, because they're totally irrelevant to my life. I read these in fine detail every time, and sometimes they come out every day, because they are immediately relevant to what we're doing in that day. What personal protective equipment are we supposed to be using? How we're supposed to be sending patients with these characteristics versus another, it really has changed sometimes twice a day as new information has come in, as the epidemic has advanced, and as we've gotten more information about how it's impacting our patients and the healthcare system.
 
Right now, we've set up a totally separate, uniquely staffed, and physically separated outpatient facility for COVID-19-positive or strongly suspect patients. That's for transfusions when they need transfusions, even some therapy that they can get as an outpatient and need to get. Obviously, there are things that we just don't do anymore. Intravenous iron for iron-deficient anemia is just not going to happen in the current situation, but a symptomatic anemia with somebody with cardiovascular disease who's getting chest pain or angina as a result, they need to be treated, and we need a place to do that. The emergency room is not the place for that. So we set up a special facility for that that's staffed by faculty and specialized nurses, and there are special requirements for personal protective equipment.
 
In short, everything's changed. It's unprecedented in my career. It's just weird being in the hospital. Everything is different. I can't even come in the regular entrance I come in anymore. But at the same time, I think people are doing a remarkable job in terms of trying to address the needs of our patients, the needs of the community, and the physical capabilities of the hospital and the university. It's been actually really inspiring.

Andrew Schorr:
Well, I'll just make a comment on behalf of the hundred people who are with us now and the others who will see this replay and just generally, thank you, Joe, for advancing science and the role you're playing clinically with the team at Weill Cornell and your peers. Laura, you too, and also in the information flow that the American Society of Hematology is attempting to do as well for people affected by these blood conditions. We're going to go a few minutes longer, folks. The doctors are willing to help, because we know we reach so many people. You've been sending questions in, and I'll plow through them as best I can. The question is also moving forward, Laura, so people are saying to you, "Okay, so we've been hearing about antibody testing and hopefully more testing for the virus. How will I know when I can go out?"

Dr. Michaelis:

The whole “what it looks like to reopen” is an incredibly important question. It has to be addressed at the individual level. It has to be addressed at a community level. It has to be addressed at a systems, like a hospital systems level. But just to speak to the individual, if you've had the disease so it's been proven by a test that you had it and then you recover, we think that you will have antibodies to that disease. That means that you can't catch that disease, unless it changes significantly enough that your body doesn't recognize it again. Antibodies are a test that hopefully over time we will be able to give that and that gives you a T-shirt that says, "I'm immune. I can go to the grocery store and not catch this and not give it to somebody else." So, if and when the antibody testing is out there and if you've gone through COVID, you theoretically would be immune.
 
Now, that may matter to you, but to the community, to the larger community we need more people to become immune so that there's less contagion, and the virus can die off. That's when people talk about herd immunity. That means a percentage of a population that's immune can prevent that entire population from getting the disease, because it's too uncommon to transmit it back and forth. That's when people use that phrase. What we really need to decide is once we get good testing, can we just test everybody, know who's contagious or know who's positive and keep them separated and the rest of people go back to work? And when can we start doing immunity? How quick can we get a vaccine, which is a way to leapfrog the disease, give people a little bit of the disease, have them form antibodies without having a chance to get sick? A vaccine is a way to get to herd immunity without having people get sick-sick in the meantime. So those are things under construction I would say.

Andrew Schorr:
Joe, we have a lot of people who are on different therapies, and normally in consultation with their doctor, they might change therapies based on the progression of their MPN or side effects of medicines, they're having trouble with somebody said with peginterferon alfa-2a (Pegasys), etcetera. Can that still happen, or does everybody not just shelter in place but whatever therapy you're taking, oral therapy or a shot you give yourself, just everything stays, or can adjustments be made even in this time?

Dr. Scandura:
I think the short answer is we have to communicate. Patients have to communicate. Call us if there's a question. We have to be available as the caregivers to answer questions and to keep tabs on people who may be at risk. So can therapies be changed? Yeah, sure, if need be. If you're having side effects or if something's going on and we need to change therapy, it can happen. Maybe now's not the time to change therapies without being pressed a little bit. So I would say, I think Laura mentioned this, but your blood counts aren't perfect, but they're okay. Am I going to chase perfect in this very imperfect situation, or am I going to accept less than perfect for a little while until we get over the hump?
 
So, for myself, and it sounds like Laura's the same, is I'm willing to accept less than perfect for a while so that I don't have to bring people into situations where there's an increased risk of contracting the illness. That unfortunately is in the same situation where you usually get your healthcare provision. You don't want to come to an emergency room right now. You just don't.

Andrew Schorr:
Laura, let's do a little role play for a second. I'm an MPN patient. I'm your patient, and we're doing telemedicine. How is that going to work? Are you going to say, "Andrew, cough, jump up and down, let's see if you're tired"? I mean what do you do for a follow-up visit? Or if I have concern I'm more tired than usual, how does it go?

Dr. Michaelis:
So you're really limited. I don't think that there's much physical exam I can do other than seeing somebody. Really I rely a lot on questions. I ask sometimes for the patient's family to be next to them so they can—sometimes a patient's family might notice something that the patient's not. So I think you really have to get pretty deep into being a better historian, taking a better history.
 
The other thing is luckily many patients have access to tools at home like the pulse oximeter, these little things you can buy at Walgreens that can keep track of people's pulse ox and their pulse, for example. Many people have blood pressure machines at home. You can ask them to walk around. You can look at them. If somebody previously was up and about doing their stuff and now they're barely getting out of the chair or they're needing a walker that their spouse left over from their last rehab assignment or something, you can pick up when people are significantly weaker or not completing full sentences. There is benefit to the physical exam, but there's also just a great deal of benefit just in looking at somebody, and Zoom can do that.

Andrew Schorr:
One other question for you, Laura. Linda just wrote in. She said she was told that she has CALR and does not need to be on aspirin and she worries, does the clotting threat with the virus change that whether she should be on aspirin or not?

Dr. Michaelis:
No. In general compared to patients with MPNs that are positive for the JAK2 mutation, we don't think spontaneous blood clots are nearly as likely in patients whose disease expresses the CALR mutation instead. So I would not recommend changing fundamental decisions about therapy because of the threat of the virus. That's a layer that can be dealt with when and if that occurs.

Dr. Scandura:                                                                       

I just would add that the biggest thing that you can change are the things that you've heard about repeatedly: wash your hands, social distancing. What you need to do is avoid getting infected and avoid infecting others. Whether or not you take aspirin is somewhat immaterial if you can avoid getting infected. So your best friends are social distancing and washing your hands.

Andrew Schorr:
Laura, I want to ask you another area. You get to know your patients over many years. I've been seeing Dr. Jamieson here in San Diego for a number of years now. We get to know each other and talk. Fortunately, I've been doing well and hopefully your patients, too. But we have the anxiety of our journey with an MPN, and then we have our anxiety about this. How are you counseling people to—I don't want to say stay calm but tamp it down a little? Because we worry, are we more vulnerable? Is there a family member that may come in who will transmit to us? We can't go the grocery store. We're just worried.

Dr. Michaelis:
Absolutely. First off, I basically tell people that it's completely normal to feel this way. This is an unknown experience for everyone. And this is not necessarily anxiety. This is rational fear. So the way to manage that is the way we manage fear all the time with support from your family, from your loved ones, with talking about it, not thinking that you're alone, with gatherings. I think exercise, meditation to the extent that you can helps sometimes to bring those things into it.
 
But I think actually cancer patients have a unique ability. They've been dealing with anxiety about something hanging over your head for a long time. I think this is a national or actually a worldwide experience that is not that dissimilar from going through cancer. You have something bad. It's hanging over your head, and you have to live with it without being in too much control over it. That's a very traumatic experience. But the coping mechanisms that you might have employed when you were first diagnosed or when you had to start on therapy, those same coping mechanisms should be back in place now, whatever that is, whether it's doing extra Zoom calls with the people who love you or going for a nice walk with some relaxing music or prayer or whatever it is that says, "I'm just going to pay attention to the present moment, right now. Right now I'm healthy. Right now I'm doing okay. Right now I'm loved." That's what we can do.

Andrew Schorr:
Joe, let me ask you a personal question. So there you are in New York. You come home at night, or you come home during the day if you've been working at night, and you've been in the hospital where there's maybe a higher worry right there about COVID. Some MPN patients have family members who go out, work somewhere, and you worry about that transmission within families. What do you do, or what do you tell others so that the person who's been going out cannot bring it to the person who's vulnerable?

Dr. Scandura:
I think what we do is try and keep our circles small. In the hospital everybody is required—we wear face masks the entire time we're in the hospital. Obviously, when we go into a high-exposure setting, we're using disposable gowns. Now they got a big supply of the N95 masks, so now they're a little more able to be more liberally used, but we put them on when we're seeing a patient who's known or suspect.
 
I think it's a little bit weird. I have to say, when I came home—I wore booties all night on my feet. I came home. I said to my wife, "Leave a bag out in front of our..." obviously, we're in an apartment in the city. I took my shoes off. I took everything off, Andrew, in the hall, everything. It was early in the morning so there was little risk. I know my neighbors. I took it all off. I dumped it in the wash. I came in buck naked, and I took a shower. Then I went out and turned on the washing machine. You know? You do what you can to keep your family safe. It was the lesser of two evils: walking 10 feet naked in the hall versus potentially exposing my family.
 
I think there are a number of people, and I say this, it's anecdotal for me, but my colleagues who are in intensive care who are doing high-risk procedures all day long, they're dealing with this a lot more intimately than my anecdotal experience. Even our junior faculty, our trainees are really on the front lines every single day, and they're all having to deal with it. One of the things that the university did is they bought blocks of hotel rooms for people who didn't want to go home and potentially expose their family, and they stay in a hotel room. They go back and forth to the hospital. I think everybody's doing it differently. Some people shipped their kids off to in-laws. I think my personal experience or exposure was relatively minimum compared to some of my colleagues. But it's been tough on people.

Andrew Schorr:
Yeah, I'm sure. Well, I have said this on other programs, and I'll say it here is, “You guys are angels.” You talk about whether it's the junior faculty, the senior faculty, the intern, whoever, the nurses and the other allied professionals, the people driving ambulances. Thank you so much for all you do. I want to just mention to our audience, so we're going to continue doing these programs for MPN patients with other experts. We want to thank Dr. Michaelis and Dr. Scandura for being with us. Dr. Scandura, I just have one more question before we go. Keep sending your questions, folks, because we keep bringing these up. You're sort of the instigator of this trial related to JAK2. Now people are saying, "Well, gee, how can I be in it?" But it's going to be randomized. Some people will get it, and some people won't, right? So, get the ruxolitinib (Jakafi) in this case.

Dr. Scandura:
I would say "instigator" is an overstatement. Dr. Evelyn Horn, who's our chief of heart failure, is the one who emailed me, so I would say she's probably the instigator. I was more—I stirred the pot. I think other people have similar ideas. I mean I can't claim uniqueness to the idea. But we did try to move quickly on it, because it's such a burning need here.
 
Look, you don't want to be on this study. You want to stay safe, wash your hands, keep away from people who might be sick, minimize your contacts with people for the time being, and don't ever get into a position where you could be eligible for this study. If you are, then hopefully you're at home. Most people can stay home. It's the subset of people who come in to the hospital where this might be relevant. I know Incyte is trying to open a relatively large multi-center study, so it may be available where you are. There may be other therapies that are available where you are as well.
 
I would say the only way we're going to learn is by doing research. That could be interventional studies, like what we're talking about. But also I can tell you over the past two weeks what we've learned about this disease and what's happening and biopsies on patients and complement depositions in lungs and skin, and the conversations I've had with colleagues multiple times daily with large groups of people each weighing in with the same goal of trying to figure out how can we do better than we're doing for some of our patients. So if you're in the hospital, communicate with your physicians, if they have something that's a clinical trial and it's something that makes sense to you, think seriously about it. If there's some other form of research, just collecting data, I would encourage people to participate, because that's really the only way we learn more about this pandemic and maybe the next one as well.

Andrew Schorr:
Well said. Well, we want to thank you for what you're doing. I want to mention to our audience as we wrap up that there is an MPN town hall that we're originating here in Southern California with my doctor, Dr. Catriona Jamieson, and then also from up the coast, Dr. Bart Scott, from Fred Hutchinson and the Seattle Cancer Care Alliance there, and with other people from around the country. So that's on Saturday, May 2nd. It'll cover treatments and testing as well as the overlay in this time of the coronavirus.
 
I want to thank Dr. Laura Michaelis from Milwaukee for being with us. Laura, thanks. I know you both are busy bees. Thank you so much for what you do there in Milwaukee and what you do with hematologists around the world, and with your journalism background, I love you for that, bringing together information so that everybody can benefit. Laura Michaelis, thank you for being with us.

Dr. Michaelis:
Absolutely. Thank you.

Andrew Schorr:
Okay. And Dr. Joe Scandura from Weill Cornell Medicine in New York City, thank you. Keep moving the science forward there, Joe. Again, though, for people to understand related to the trial you're working on, you don't want to get to the hospital. We want to stay home and be well. Thank you so much. I've got that image of you taking your clothes off in the hallway. But thank you. Stay safe, Joe. All the best.

I want to thank you. We'll let you go. Dr. Joe Scandura, Dr. Laura Michaelis, New York…

Dr. Michaelis:

Thank you.

Andrew Schorr:
...and Milwaukee. Thank you, everybody.

Dr. Michaelis:

Stay home. Stay safe.

Andrew Schorr:
And Andrew Schorr here in Southern California. Just want you all to write. Practice what was discussed here. Have an individual discussion, even telemedicine with your doctor about all these things you've been asking: "I'm on warfarin (Coumadin or Jantoven). I'm on this. What about this? Do we change the dose, etcetera? Can I get my medicines mail order? Can I get more?" Like, I got a 90-day supply of fedratinib (Inrebic) just to have it, so I didn't have to worry, whatever your medicine is. If you need a transfusion, if you need phlebotomy, you have a discussion with your doctor. All right, thank you so much for being with us. As I like to say, and we'll do more programs, I'm Andrew Schorr. Remember folks, 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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