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MPN Patient Care During Coronavirus Pandemic

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Published on May 18, 2020

How can myeloproliferative neoplasm (MPN) patients receive the best care during the coronavirus pandemic? Should they go to appointments or ask about telehealth? Do transplants and other procedures need to be postponed?
 
In this segment from our recent town meeting, a panel of experts including Dr. Catriona Jamieson and Nurse Practitioner Becky McAlpin from UC San Diego Health Moores Cancer Center, Dr. Bart Scott from Seattle Cancer Care Alliance, and social worker Robin Katz from Robert H. Lurie Comprehensive Cancer Center discuss the impacts of COVID-19. Topics include telemedicine, symptoms to watch out for, JAK inhibitors, and whether or not MPN patient care is business as usual.

This program is sponsored by Bristol Myers Squibb. This organization has no editorial control. It is produced by Patient Power in partnership with Bag It, MPN Advocacy & Education International and the MPN Research Foundation. 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 | MPN Patient Care During Coronavirus Pandemic

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 2, 2020

Andrew Schorr:
Hello. I’m Andrew Schorr, and, of course, COVID-19 is on everyone’s mind. So let’s discuss the coronavirus and its impact on people with MPNs with our panel of experts.

So, Dr. Jamieson, I'm going to see you for a telemedicine appointment this week. So are you still, if you will, as an MPN practitioner, open for business? Can I still have consultations and the proper treatment for my MPN, or is it full stop because of the coronavirus?

Dr. Jamieson:
Yeah, I think that's a very good question. As usual, Andrew, we're definitely open for business, but business seems to be operating in two different ways. So basically we have telehealth, and I never thought I'd embrace this, but we have an app on our cell phones that we just tap. It recognizes my face, so I can't escape. And then it gives me all the information about all of my patients. And at first I thought, I'll never use this. Nobody will like it. And it turns out people really like it. They can be at home. I get to see their houses and the very nice artwork. It's fun, and basically people are more relaxed, they feel less stigmatized, they're getting local lab work. If somebody says, “I feel full early, I'm really having more night sweats,” then I can send them for an ultrasound of their spleen to see what their spleen size is. So it's been highly embraced by our patients.

I think the initial thought was maybe people wouldn't know how to use an iPad or the Internet. I think everybody has become very savvy about using an iPad or using their regular cell phone to do things that they thought they'd have to go out of the house for.

So I think this is a real advance in medicine. We get our lab work back very quickly, and for those people who don't feel well, we insist that they come in, because we are open for business. We test all patients coming in the door now with the rapid test where we get a turnaround time of only 15 minutes for SARS-COV-2, which is also known as COVID-19, and we also do the antibody test to see if you've been exposed. And now we're testing all healthcare workers. So it's a very safe place to be. And I think the main message is, come in if you don't feel well, and Becky and I will see you. And it's the same for your healthcare centers. Most of us have learned how to deal with this now, and we're in much better shape, we've got personal protective equipment and masks, and we'll keep you safe. So don't stay at home thinking, "Oh, I'll just wait till the COVID crisis is over." Please come in if you don't feel well.

Andrew Schorr:
Okay, so, Dr. Scott, there are certain interventions that are not going to happen over telemedicine. Where do we stand with that, or planning for that, scheduling that, if people need these sort of bigger guns, if you will?

Dr. Scott:
That's a very topical question, so I'm glad that you asked. It's a complex question. When COVID-19 first hit Seattle, we were one of the first areas in the United States affected by COVID-19, we decreased the number of arrivals that we were having for stem cell transplant. For most patients with myelofibrosis who need to undergo allogeneic transplant, it's not as urgent, and there was concern about healthcare resources at that time, because we didn't know how big the pandemic was going to affect us.

Now at this current time, we've released all of those restrictions, and we're starting to schedule as we normally would. I've been attending for a lot recently. One of the other things that we did as a center is that we adjusted the age upper limit of who would be attending in the hospital and in the outpatient clinics. So younger physicians, which I guess I still qualify as, have been asked to step in and do more attending time. But the reason why I bring it up is because I've been attending on the leukemia service, on the transplant service, and so I've had a lot of experience with COVID-19 and how it's affected our population. And so far, knock on wood, we've not had very many patients who have been diagnosed with COVID-19 through the transplant or while they were being treated for their leukemia.

Like, Dr. Jamieson, I also have some non-transplant studies, and actually I'll tell you there have been some good aspects of this telehealth medicine, which has already been discussed. We too have an app that we use, we too have a telehealth program that we use, but another benefit is that a lot of the protocols have relaxed some of the requirements for in-site, or on-site visits so that the visits can be done remotely and so that we can mail their medications to them rather than them having come to the center themselves. So we're all trying to deal with this the best that we can, but the message I would say is that we're up and running and that if someone needs to have a transplant done for their diagnosis of myelofibrosis, that we are prepared to do that now.

Andrew Schorr:
So, Dr. Jamieson, two big questions. First one is are we living with of the MPNs at higher risk, and what are you telling your MPN patients related to how we go about our lives?

Dr. Jamieson:
Yeah, I think the answer to that is yes. I think with MPNs, people are at higher risk for contracting COVID-19, which stands for coronavirus infectious disease 19, 2019, and of course it's clearly with us still in 2020. So maybe we should call it COVID-20. But yes, there is a slightly higher risk of contracting the virus and also having complications from the virus, just because in MPNs the immune system doesn't work as well. So the risk of contracting it is a little bit higher. But the good news is I think people with MPNs are generally so careful about washing their hands, avoiding really close social contact, because we've informed people that that's the case anyway, that we haven't seen a high rate of conversion to COVID-19 positivity, as Dr. Scott was mentioning in our MPN population.

I think people have been judicious and have been sending somebody else to Bonds or whatever grocery store or whatever pharmacy. I think people have been very careful. We have everything in place now where we can really look after people properly, and so I don't think people have to worry if they do get sick. We will look after them, and I think that there are some tangible efforts to curtail the enthusiasm of this virus to really wreak havoc on the body, not just the lungs, but the heart and other tissues.

Andrew Schorr:
Okay. And, Becky, if people have concerns, they should call. Are there different symptoms that somebody with an MPN might have than what is sort of in the general media? So what are you telling your patients? I want to hear from you if you have dadadadada, you know?

Becky McAlpin:
Most certainly if they have a fever if they're having any respiratory distress, loss of taste, loss of smell, even GI symptoms. If they have any concern, they should give us a call. You can't overcommunicate.  The COVID virus is different than the flu. So if they've had flu and they had this heavy fatigue and these aches and pains, they need to get ahold of us immediately.

Andrew Schorr:
Okay. And, Dr. Scott, I have another key question for you, and then I want to get to Robin before we move on. So we have heard that the JAK inhibitors could have benefit in reducing the cytokine storm, if you will, that can come with the severe complications of COVID-19. I don't know where all the studies are, but are we right? A, trials are going on, or starting. And we wonder if we're taking one of those drugs, do we have some protection?

Dr. Scott:
Well, to sum it up in as few words as possible, the most appropriate answer would be, I don't know. There are a lot of interesting theories. The anti-inflammatory properties of JAK inhibitors in general is well-known, and there are some patients, and it's poorly understood at this point in time why this happens, but there are some patients when infected with COVID-19, develop a profound, massive pro-inflammatory response to the virus. And I think it's a very interesting phenomenon that occurs. Why it happens in some people, and it doesn't happen in most is a very interesting question. But the potential role of the JAK inhibitors would come into play in that setting, because the anti-inflammatory properties of the JAK inhibitors may be beneficial.

And yes, there are several clinical trials that are underway trying to answer the question, do these JAK inhibitors benefit patients who have a profound inflammatory cytokine response to COVID-19 infection? Whether or not it's beneficial, I think we have to be cautious about, and I don't think we should be sending the message that taking these medications protects you, because I don't think we know that yet. But there is a potential role, and that's exciting, and I think it's very interesting, but I can't say that it's definitive at this point in time. I think that there are a lot of interesting questions, but we just need more data to know the answer for sure.

Andrew Schorr:
Okay. Robin, I just want to highlight some of the things we're going to talk about just very briefly.

Robin Katz:
Yeah.

Andrew Schorr:
This is especially an anxious time for folks like meright?

Robin Katz:
Yes. So I totally echo what Dr. Jamieson and Dr. Scott and Becky have been saying. This population is very good at being cautious about their health care and I think they've improved upon it during the COVID-19 with the masks and social distancing, washing their hands. I do think telemedicine is going to become a really good tool in the future now. I know my institution is using it much more for patients who don't need to come in every week just for a visit, and they can check in with their physician and their NPs more routinely, and I'm finding the patients feel a sense of relief and stability, because they're being cared for in the same manner so they don't have to go in, so that's alleviating some stress.

Andrew Schorr:
So I have a question first for you, Dr. Scott, and then maybe Dr. Jamieson will chime in as well. The knowledge of how the virus affects people with MPNs. Are you guys talking? Like somebody in Spain, somebody in Italy, somebody in the UK, somebody in Australia, are you sharing information now so that when a patient says to you, "What's my risk from the virus? Or, are we learning whether these medicines can help?" Will you say like earlier, "I don't know." Are you guys working together so that the “I don't knows” become “I do know?”

Dr. Scott:
Yes. There's actually a COVID-19 physician group on Facebook, and then we also have a COVID-19 transplant group. And then as you know, I'm pretty active on Twitter, so we have a COVID-19 that we're following on there. And then institutionally, we are capturing all of this data prospectively, so we are reporting all the outcomes that we have for patients with myeloid malignancy specifically and COVID-19. The other thing that we're doing, which I think is actually going to be even more beneficial, is we're tracking how patient care is affected, because there's no doubt that patients do feel a little more anxiety about traveling where a major academic center like UCF is. So we get a lot of referrals from outside, we do a lot of remote visits, but we are tracking how that affects our treatment paradigm, if at all, with the COVID-19, but the short answer to question is, yes, we are capturing this information.

Andrew Schorr:
Dr. Jamieson, you, like Dr. Scott, you guys fly around the world. Are you all doing your own sort of telemedicine conferencing now? And so the answers will emerge specifically for MPNs that you with your colleagues who are researchers—if somebody comes to you in two months, you'll have more data to share with them about what's known than you do today.

Dr. Jamieson:
Yeah, we were talking a lot about the clinic and how science really helps to get new medicines made. I think what has been really remarkable about this COVID crisis is how quickly we can do science that gets to the clinic. I think by having this crisis it’s become the mother of invention—or not to be sexist, maybe the father of invention as well. But it's a big deal. It's got all these people working together to make diagnostics that I think will actually have a ripple effect to help us make better diagnostics that may be point of care or that you can do at home.

There's going to be a big paper published on that soon just to show how COVID-19 has affected people, not just in terms of the virus itself affecting them, but how they seek healthcare. And then what we won't know for a little while is economically how does this impact, you know people in the U.S.? How can we make healthcare more accessible in general? And can we work together with your group, Andrew and Esther, to actually make sure you allow us to track changes in real time and people's perception of healthcare and how we can make it available.

Andrew Schorr:
Thank you so much, Dr. Jamieson. And, of course, communication and collaboration are keys to getting the best care with an MPN during this coronavirus situation. 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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