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Latest COVID-19 Information for MPN Patients

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Published on June 4, 2020

Should I get tested for COVID-19? What precautions should I take as states open back up? Is it okay for family members to visit? What about talking to neighbors if I pass them in the street?

In Part 2 of our recent Answers Now program, host and MPN patient Andrew Schorr got your questions answered by MPN experts Dr. Ellen Ritchie from Weill Cornell in NYC and Dr. Brady Stein from Lurie Cancer Center. Dr. Ritchie's patient Ruth Fein, who experienced COVID-19 symptoms, shares what she is doing to protect herself. Tune in as they discuss the difference between the antibody test and coronavirus test, if you should get tested, if MPN patients have a different immune response to antibody tests, and more.

If you missed Part 1, watch it here: COVID-19 Testing for MPN Patients

For more information about Ruth Fein’s book, mentioned in this interview, see the resources section below.

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 | Latest COVID-19 Information 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.

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? So, on the news they're saying testing is increasing, anybody who wants one can get one, whatever. And also, I know not all tests are alike.

Dr. Ritchie:

There are lots of controversies with testing. First of all, at the beginning of a COVID crisis, we were not able to test everyone that we might want to test. There was a shortage of PPE, there was a shortage of swabs, there was a shortage of reagents. We were actually unable to test patients that would call us and even say that they had symptoms, because certainly we didn't have enough testing apparatus. That's generally been solved. And we can now test patients who are symptomatic for virus. And in general, at Weill Cornell we call every single patient prior to an appointment to determine whether or not they have symptoms of COVID.

If we believe that they do, they go to a separate clinic where they are tested for COVID, and they're advised to go home until we have the test result available. But, now we can get a rapid test result at about two hours. Again, there is a 30 percent false negative value to the stats, which is a problem that there are some patients who have the virus that these nasal swabs will not detect. And then we oftentimes, if we're sure that that patient may have it, or their symptoms are strong enough that really compels us we continue testing.  

Patients can be positive for the virus for various periods of time. I did have one MPN patient who continued to have a positive nasal swab for nine weeks after the initial positive swab, continued to appear to show virus for nine weeks. So, if a patient tests positive and we're considering treatment, we may continue to test them by nasal swab before we go forward, and give them cancer treatment.

Andrew Schorr:

Okay.

Dr. Ritchie:

The antibody test is a different test, and there are different sensitivities to that particular test also.

Andrew Schorr:

Well, let me just ask you about that. So, one is a snapshot, yes or no. Do you appear to have the virus now?

Dr. Ritchie:

You are symptomatic really.

Andrew Schorr:

The antibody test has your body previously mounted a response to the virus, and does this defensive mechanism still show up in your body? So here's the question, do MPN patients have a different immune response or might they?

Dr. Ritchie:

We don't know the answer to that question. And we don't know the answer to that question for cancer patients in general. And, in fact, we don't really know the answer to that question in the general population. So, there have been family members of my patients who have definitely had COVID-19 and have been positive for it, who have not mounted antibodies. There are other patients who've been asymptomatic who have mounted antibodies. I think that's going to be one of the really interesting areas of research as we go forward as to what percentage of the general population actually creates antibodies. 

How well do those antibodies work? What's the duration that those antibodies will be effective? Will it be like the flu that you need a new vaccine every year for COVID to actually protect you against the mutated form of the virus? And how it differs potentially among cancer populations or among other populations with illnesses like diabetes or other things. So, that's what we will be learning as we are on this steep learning curve for the COVID-19 virus.

Andrew Schorr:

Right. So, Brady, it's okay to say I don't know, and I think Ellen is saying some of that—we don't know yet, we're trying to figure it out. So, we MPN patients wonder whether we're different. So the answer is we don't know. So, what do you tell your patients on how to live their life now, right? In physical distancing, washing your hands, being with family in this opening up world, do we MPN patients open up?

Dr. Stein:

So, that's a really good question about. We try to follow CDC guidelines as best as we can. I think the questions we're getting a lot are whether family can come and see them. So, we have kids who live elsewhere, and they want to come and stay with them. And a lot of this is we don't know, use your best judgment. We don't know what networks the kids have been running with. It’s just try to use your best judgment. A lot of these questions, we don't know the answers to. I think that's the best way of stating it; use good judgment, follow the guidance from the CDC, follow the guidance from your physicians, your primary care doctor and your hematologist. I think what we're learning is that being outside is probably fine.     

So going out, I'm encouraging all my patients to get exercise and take walks. I think outdoor transmissions are probably not a major thing. I think the highest risk is probably indoor—prolonged indoor exposures with people who could be sick. And so, trying to stay within your own family network, but not completely isolated and trying to use physical distancing rather than social distancing. It's okay to meet with neighbors if you're across the street and go out and say hello. It's certainly okay to go for walks. So, we're trying to navigate through this as anyone is, those are the practical common-sense things that we're trying to share.

Andrew Schorr:

Ruth, what are you doing in your own life, and you have grandchildren and people around there, how are you protecting yourself?

Ruth Fein:

I've been super careful, and I'm married to a man who loves me enough to do super protection. So, I've not been out of the house. Yesterday was actually the first day I've been out of the house to go to the farmers market where everything has been very far away. But, we have brand-new grandchildren. We have identical twin boys born three weeks ago. And, it was very hard not to be near them. And, just on Monday, we actually got together and decided again, as you say, weigh the risks. I know I'm safe. I haven't been anywhere. If I was sick, it was several weeks ago. And so, we put our masks on, and we held the babies. So, it's about being smart. I agree, but, be very careful.

Andrew Schorr:

So, my daughter and future son-in-law moved from Miami to LA, which is near us. And, of course, we wanted to see them. They finally had a coronavirus test negative, had to wait five days for the results in Los Angeles. And then they felt comfortable coming down here, and they've been quarantining for quite a while. So, they were here, and that was great. I am going outdoors, Dr. Stein, I have the energy to go on a bike ride. I have a new bike. I can't wait. I'm going to ride it today with my friend who’s also been quarantining.    

So, there's no big pack. And it was interesting at the bike store, all these groups. I don't know if you've seen it in Chicago or New York. But, here in San Diego, they'll have like 30 bicyclists going together, and they don't do it anymore. Because of the breathing, breathing almost like a closed space, even outdoors. So, I'm being careful. Dr. Ritchie, what are you telling your patients?

Dr. Ritchie:

I'm telling, what's happening in New York right now amongst my MPN patients really is the prospect of going back to work, and into an office, or maybe the relaunching after the quarantining and how it is we handle that. I think that in New York state, we're going to be handling going back into society or going back into your office or into social situations by extensive testing. So, that patients are going to have serologic testing and patients are going to have nasal swabs before they go back into an office.          

I recommend to people that they not go into a large open office space and start working without protection. And to hope that their bosses are going to have a staggered start or a staggered set of working hours where instead of everyone in the office coming at the same time, that there will be staggered groups of people that come in for individual days or for individual weeks. 

I think public transportation is a lot harder to think about how you're going to negotiate that. Certainly, masks are with us to stay for the foreseeable future. You can wear gloves in public transportation, but don't touch your face with gloves. It's the same as touching yourself with your hands, and that it doesn't replace handwashing—probably one of the most important aspects of helping fight this virus. I think public transportation, a lot of people felt that that was responsible for some of the spread of virus in New York City.     

We've seen a much larger group of patients use Citi Bike or start to bike ride back and forth from work. And I think there will be more driving back and forth for work in New York City as time goes forward. Again, there are lots of things we don't fully understand about the transmission, and in New York City, recent people who had transmitted the disease have actually been home on quarantine. So, it's very hard for us to understand 100 percent as to how those viral infections are being transmitted.          

So, there's a lot still to learn I think, as to how we best protect ourselves. And I think we re-emerge into society and the safest way can.

Andrew Schorr:

How reliable are the tests?

Dr. Ritchie:

So there are different reliabilities depending on which type of test you are using. At Weill Cornell, we're using a test that was developed at NYP between Columbia and Cornell, which is 99 percent sensitive to having antibodies to the virus. There are some out there which are less sensitive. I've had some patients who've had antibody tests elsewhere that have been positive here and vice versa. So, I think that we're not even—the types of antibodies that patients are going to make to this virus may be more varied even in what we are testing for.      

Again, this is an area that's new. We are learning about antibody testing and we're trying right now just to determine, are their patients who are really made some immune response to this virus, and to try and figure out what that immune response really needs?           

It's unfortunate I can't give you black and white, yes and no, we know this 100 percent type of answers because we're all learning. I don't know about Brady, but, around January 15th of this year, I knew that something terrible was happening in China, but I really was not thinking that it would hit us so fast, and that I didn't know very much about the virus at all, in fact. My learning curve about this virus has really been from the 27th or 28th of February up into the present. And I'm learning more and more every single day as we see more and more of these patients.

Ruth Fein:

I just want to make a shout-out for televisits. I don't know if you've had any questions about them.

Andrew Schorr:

Well, we have, and you've done it with Dr. Ritchie. And so, that's probably giving you confidence that you can stay home and get quality interaction with your doctor.

Ruth Fein:

Yeah. It's been great because she is three-and-a-half hours away from me. So, for somebody who had to go in every three weeks and sometimes every two weeks, if I was having a problem, telemedicine has kept me safe, and really been amazing. So, if the question didn't come up, I wanted to give other people the sense that it's just been terrific. And it's not. I don't feel any less attended to, in fact, it's a more focused visit maybe, and she's always focused. But it's been great.      

And I would encourage anyone who hasn't had that opportunity to be confident that it's a great alternative. And maybe it will be in our system for a long time, which would be a good thing.

Andrew Schorr:

Right. I did that here with Catriona Jamieson in San Diego, and again, same. Let's get some closing comments. Ruth for you as a patient, you think you had the virus, you're feeling better now, but only now did you go to the farmers market. So, how are you going to live your life now?

Ruth Fein:

I'm going to live my life well, and with spirit like I always do, but a little more carefully, I always have a mask. I'll keep my distance. So far, we haven't had anyone else in our home. So, we'll proceed with lots of life and lots of caution.

Andrew Schorr:

Okay. And, Dr. Ritchie, as Dr. Stein was just saying, he's not urging everybody to just like rush out and get a test. And there've been some crummy tests around too. So, regarding testing that too is a wait and see it sounds.

Dr. Ritchie:

And it depends on where you live in and what the situation happens to be. In Maine, you are socially distanced a lot more than you are in New York City. And as people think about going back into a workplace or using public transportation, those issues are a little bit different in a place like New York or Los Angeles or Chicago than they are in some other places. So, I think that different public health departments are going to look at the role of testing differently depending on how populous your area is.         

And how they think it may assist in decreasing spread of the virus amongst certain populations. There'll be variations between what happens in Illinois and what happens in New York City, certainly in what happens in Iowa or Maine, there will be differences. But I think for us and for employers in New York City, I think that the testing is thought to be an incredibly important component of allowing people to go back to work safely. So, it will be different in different areas of the country.

Andrew Schorr:

Well, Ellen Ritchie, I want to wish you well with the research you're doing on ruxolitinib (Jakafi) and whether it can help related to people who are affected by the virus, we will stay tuned for that. You guys have been working late. I want to thank you. Brady, a final comment from you, what you want to say to our audience of MPN patients.

Dr. Stein:

Oh, thanks very much for letting me be a part of this. I would agree with Dr. Ritchie in all fronts. There's never been a time where we've learned more. We're all learning. No matter our specialty, it's touching all of our specialties. It's touching our patients in different ways. And so, we're trying to keep up. It's an overflow of information. We're all trying to keep up. There's a rapid pace but we're all learning as we go. And so, we're trying to adjust to this era.         

So what I would say is be patient with us. We're trying to learn this as best as you're trying to learn about this. We're going to make decisions together. If you have questions, as you've always done, reach out to us and we'll make a plan together. And when we don't know, we'll tell you, we don't know, but we'll give it our best shot with questions that come up. I'd also support telehealth; we've been 99 percent telehealth since March 15th or something like that. And, there'll be some, it's hard to say silver linings. This is a devastating time, but there'll be some innovations from healthcare that remain.  

And I think as Ms. Fein said, telehealth is definitely going to be one of those things. I think it's going to be even more beneficial to the MPN patient population, because we've always advocated for a team approach. You have your doctor near home, and you have a doctor that might be further away. We've always supported that, but now it's going to be even easier. You don't have to drive the three to four hours all the time if you can have a video visit with your MPN provider. So, it's going to be a way that we can move forward. It's going to be a way of innovation. And I think it's going to be really helpful for patients with rare diseases to have care near home, but to connect them to an expert far away.

Andrew Schorr:

All right, you guys have done that today. I want to thank Dr. Brady Stein from Lurie Cancer Center in Northwestern Memorial hospital in Chicago for being with us after a long day at the clinic. Same with Dr. Ellen Ritchie, thank you for being with us from Weill Cornell in New York. We love you guys. You are our angels, and really, we want to thank you so much for being with us. And Ruth Fein with the children's book and living with an MPN 25 years, you're going to let us know how we can get that book about Aiden the 9-year-old, living in the time of the pandemic. We'll let you all go. I have a couple of wrap-ups, pop yourselves off and have a good evening. Thank you so much for being with us, all three of you.

Dr. Ritchie:

Thank you for having us.

Ruth Fein:

Thank you.

Andrew Schorr:

All right. Thank you so much, Ellen, and, Ruth, thank you. Okay. Couple of quick comments. So, we did do a program just yesterday I believe with two laboratory science experts, and they are Susan Leclair and her husband, Jim Griffith. And so, we'll have a replay of that on Patient Power, talking a lot more about antibody testing, but you can see there are a lot of unanswered questions still, right? How long will you have immunity for? Or if you had the COVID virus weeks and weeks ago, does it show up in the current test, et cetera?         

A lot of this isn’t known and as you heard from our doctors, it varies as well. Okay. Every two weeks we're doing these programs for the MPN community. Send in your questions. If we didn't get to your question today, we'll try it, and the next time we'll have other noted experts, people of the caliber of Dr. Ritchie and Dr. Stein. And I want to thank Incyte for being our sponsor today and their commitment to the MPN community. I'm Andrew Schorr, as I always like to say, and as an MPN patient, 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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