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COVID-19 Testing for MPN Patients

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Published on June 3, 2020

Have any MPN patients gotten COVID-19? Should you get tested? What precautions should you take? Watch as host and MPN patient Andrew Schorr talks to Ruth Fein, an MPN patient who experienced COVID-19 symptoms. He then gets the facts from Ruth’s doctor, Dr. Ellen Ritchie from Weill Cornell Medicine in NYC, along with Dr. Brady Stein from Robert H. Lurie Comprehensive Cancer Center. Tune in as they discuss how many MPN patients have been diagnosed with COVID-19, if medicines like JAK inhibitors or interferons can offer protection, what clinical trials are being done, and more.

If you missed Part 2, watch it here: Latest COVID-19 Information for MPN Patients

For more information about Ruth's children's book on coronavirus, visit here.

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.

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Transcript | COVID-19 Testing for MPN Patients

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 28, 2020

Andrew Schorr:

Greetings from Southern California. I'm Andrew Schorr, with Patient Power. This program is sponsored by Incyte Corporation, and we thank them for their support. So, here we are now with this pandemic continuing, I'm a myelofibrosis MPN patient, so believe me I'm thinking, how does my MPN affect me in this time of the coronavirus and the COVID-19 illness that follows from it? I have a lot of questions we've been seeing, all the questions you've been seeing along the way, and we'll try to incorporate that, because many people tend to ask the same thing.

All right, first, let's go from California to Saratoga Springs, New York. There is my friend, Ruth Fein, and also joining us is her doctor in New York City at Weill Cornell, Dr. Ellen Ritchie, and also over in Chicago, at Northwestern Memorial and the Lurie Cancer Center is Dr Brady Stein. Dr. Ritchie and Dr. Stein are MPN specialists. And Ruth, having dealt with MPN over 25 years, Ruth, right?

Ruth Fein:

Yes.

Andrew Schorr:

ET, PV, myelofibrosis. Finally, along way, connected with Dr. Ritchie, is a specialist, and you know for a number of months now I've been in a trial of ruxolitinib (Jakafi) and another drug in a trial, right from Constellation, I think?

Ruth Fein:

Yes. Started in January, the very first.

Andrew Schorr:

Right. But, something happened along the way. So, let's go back a month or so you were doing pretty well, then what happened?

Ruth Fein:

Yeah, I was doing great. And then for exactly three weeks, I felt awful; extreme fatigue, feeling like I had a low grade fever, dry cough, diarrhea, every symptom about COVID, yeah.

Andrew Schorr:

Okay. Now, ultimately you did have a test, right?

Ruth Fein:

Yes. I tested negative.

Andrew Schorr:

As far as the snapshot test, did you have the virus then?

Ruth Fein:

Correct.

Andrew Schorr:

Okay.

Ruth Fein:

And that was at three weeks. So, aside from the normal negative possibility it was also three weeks in.

Andrew Schorr:

Okay. So, there's your doctor, Dr. Ritchie, who in a way you're doing a telemedicine appointment today, but you do that with her. So, Dr. Ritchie, so there you are in New York where you're all too familiar with coronavirus, just thinking about it, hearing about it in at the hospital. So, do you think Ruth was affected by the virus?

Dr. Ritchie:

It's really hard to say, because there's a 30 percent false positive result that occurs when you do the nasal swab. And, that false positive result may be because of the quality of the nasal swab that is done or just the test itself. So, there are plenty of patients who have come into the hospital in recent months, month-and-a-half that clearly have symptoms of COVID that we really are definitely sure they have COVID, but their swab is initially negative. And there have been some patients we've had to do four swabs on actually before we've had a positive swab.

Andrew Schorr:

Okay.

Dr. Ritchie:

We’re learning along the way. And as I said, it may be, to get a really good swab it's quite uncomfortable. You really have to go way up in your nose, and most people feel that I'm actually trying to probe their sinuses, and that's really what's necessary to get a good swab. So, it's possible that you have that poor swab, and you have a negative result.

Andrew Schorr:

Okay. And the good news though is Ruth you as a long-term MPN patient have recovered, and you're doing well, right?

Ruth Fein:

I'm doing great. And it was like clockwork at the end of three weeks. I went back to feeling great. Yeah.

Andrew Schorr:

Right. Before I forget, I wanted to share, Ruth has written a children's book featuring a character named Aiden who is named after her grandson, 9 years old. And it is about a child in this world of the pandemic, right?

Ruth Fein:

Yeah. It's a story that helps children through the changes and challenges of living through what we're all living through.

Andrew Schorr:

Okay. Before we skip over to Chicago, Dr. Ritchie in New York city, what is your experience with your MPN patients related to the coronavirus? Now, obviously we have people who are broad range from ET to PV, to myelofibrosis. I have myelofibrosis for seven years now, fortunately doing well. But, what are you finding as far as your experience with them and how sick people get?

Dr. Ritchie:

So, we're still collecting the data. Interestingly the MPN patients that we have have not gotten terribly sick. We've had a couple of patients with myelofibrosis who actually were intubated with the virus, one of whom died at an outside hospital. But, we're finding now that we're doing serology testing, and just beginning to do serology testing on some of our MPN, leukemia and MDS patients that we're finding positive serology and a percentage of these patients were—they didn't really get terribly ill during that period.

Andrew Schorr:

Okay. And when you say positive serology, meaning they have developed some antibodies?

Dr. Ritchie:

They have developed some antibodies. We have some figures for cancer patients as a whole here at Weill Cornell, where it does look like cancer patients as a whole who are symptomatic that we had about 28.4 percent of those patients who were actually positive by nasal swab for the coronavirus. That of 475 asymptomatic cancer patients, we only had about 1 percent who were positive, which is very much in contrast with, for example, our labor and delivery patients, where we had 13 percent positive amongst asymptomatic patients, which may speak to the fact that our cancer patients are better at self-isolating, and then many other patients, and that's why the rates were so low. And, our intubated patients with cancer did no worse than our non-cancer patients if they were intubated in the ICU, at least that's our preliminary data.

Andrew Schorr:

Okay. Let's go over to Chicago. Dr. Stein, so, what's your experience? Chicago has been a hot spot as well, for the coronavirus. What's your experience at the Lurie Cancer Center with your MPN patients?

Dr. Stein:

Actually, in my own MPN patients, I've only had one patient that developed coronavirus who had COVID-19. She had a mild case. She could remain at home and has recovered through it. I take care of general hematology patients. So, I see lots of patients with benign hematologic conditions, including sickle cell. And I've had patients with sickle cell anemia who've contracted COVID-19, a few who have gotten very ill requiring intubation, but were able to recover with aggressive therapy. Among my MPN patient population, thankfully there's been a very limited number of patients that have gotten sick that I'm aware of.

Andrew Schorr:

So, Dr. Ritchie, you've been involved in a trial of ruxolitinib or Jakafi—which is one of the medicines I used to be on, and Ruth is on it now as part of a trial—as to whether it can lessen the inflammatory reaction with the more advanced COVID-19. So, where does that stand now? Because, any of us who've been on a JAK inhibitor wonder, is it offering some protection?

Dr. Ritchie:

Well, that's what we will hopefully come up with the answer to that question over time. Ruxolitinib has been used in many anti-inflammatory illnesses besides MPNs. It's been used in graft-versus-host disease in patients who've had bone marrow transplants, and it's had very favorable initial results in something called HLH, which is another very inflammatory condition. So, the thinking is that potentially this might be a way to dampen the immunologic effects of the COVID-19 virus on patients who develop a strong response.          

And the trial that we have developed at Weill Cornell is basically looking at patients who are sick enough to be admitted to the hospital, but not sick enough to go directly to the ICU, to see whether or not treating these patients with ruxolitinib may decrease the rates of ICU admission, and intubation in admitted patients. So, that is the plan that we have for our own institutional trial.

There are two larger trials that are being run by Novartis looking at ruxolitinib in patients who are intubated to see whether or not treating patients with ruxolitinib can decrease the time that patients are intubated who have COVID-19. Patients who are intubated with COVID-19 are often intubated for a very long period of time, somewhere around 21 to 28 days. So, the idea would be to decrease that amount of time. They're also going to be looking at that same population of patients who are sick enough to be admitted to the hospital with some degree of respiratory failure to try and prevent their being intubated. So, there are two separate trials that will be run using ruxolitinib and COVID-19.

Andrew Schorr:

Okay. Well, we're all interested, any of us on JAK inhibitor. I happened to be on a different one for fedratinib (Inrebic), but will wonder JAK inhibitor or ruxolitinib whatever, could it help? But many people are on interferon, Dr. Stein, what do we know about interferon? I know your patients are asking you.

Dr. Stein:

Yeah. So, it's a great question. I think it's a common question among our MPN patients to look at their disease or their therapy, and to ask about whether they're at a higher risk than someone their age and gender. So, the question about therapy—interferon is actually not a drug that suppresses the immune system, it's actually an immune activating or an immune stimulating drug. So, for my patients who are on interferon, interferon has actually been initially studied as an antiviral medicine.           

It's actually currently being studied as a treatment for COVID-19. So, for the patients who are on interferon, I generally have been providing reassurance that this is not a medication that they would have to stop. This is not a medication that would put them at a higher risk for having a more severe course of COVID-19. And there's a lot we're learning from this pandemic. We're all learning as we go.

Taking the standard precautions are really very important. So, the guidance from your primary care doctor, the guidance that your hematologists will provide when asked, the guidance from the CDC, all of those are great places as to look for guidance.     

In terms of MPNs, where I first looked, because when this all started back in March, we started to get a lot of messages, a lot of emails in my chats, and for MPN patients, it's hard to find a great source of information about how COVID-19 might affect them on an individual level. The place that I went initially was the American Society of Hematology, because ASH convened a panel of experts that did essentially a Q&A. A frequently answered questions site going over the different diseases, the different MPN subtypes, and the different therapies and how patients might act if they're on interferon, if they're on ruxolitinib, if they're on anticoagulation, if they have ET, PV or myelofibrosis.

For the question of PV, does it heighten risk? I would say first PV, we don't think of as an immunosuppressive condition. But, it is a condition that's associated with an increase in clotting risk. And there's been a lot of information about an increase in thrombosis risk with COVID-19. So, for patients who are with PV right now, we try to do our best with phlebotomies.      

We try to maintain, it's a balance though, because we're trying to keep people home and safe. But generally I would say that coming into the clinic, the clinics are safe places. I tell my patients that the clinic and the laboratory are generally safer places than the grocery store. There's universal masking, there's no one in waiting rooms, there's physical distancing, they're staggered appointments. So, I think to try to follow as best as you can, along with your treatment program, to continue on your aspirin, to follow your blood counts, to what your doctors guide you about phlebotomies, I think that's probably the best way to approach PV in the context of COVID-19.

Andrew Schorr:

What about the people are on something like hydroxyurea (Hydrea)? Chemo, you wonder, well, does it tamp down your immune system?

Dr. Stein:

In terms of the spectrum, I do not think that hydroxyurea suppresses the immune system. I don't think it stuns the immune system. So, I don't think hydroxyurea itself impairs an immune response and the patients to have an infection. In terms of the ruxolitinib, it's a tricky one, because we know it's immunosuppressive. And so, patients on immunosuppression can be at higher risk, but at the same time we know that it's anti-inflammatory properties could be very beneficial, just like Dr. Ritchie said, it's been used in a number of autoimmune or hyper inflammatory conditions.           

So, ruxolitinib has been tricky. What I've tried to do is, one, maintain the current dose. I've not decreased the dose just because of COVID-19. I've tried to defer on starting at a new, but, there have been two patients in the last two months who I felt the benefits do outweigh the risks. These are very symptomatic patients where there could be distinct benefit from having ruxolitinib. So, it's been a tricky one with ruxolitinib.

Andrew Schorr:

Okay. Dr. Ritchie, let's get into testing. So, you were talking about the limitations of getting at the right test, and then we're also hearing about antibody testing. What are you telling patients about whether we should get tested?

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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