COVID Town Hall Meeting For Rheumatology Save
Q&A with the Experts: Drs. Cassie Calabrese, Jack Cush, Artie Kavanaugh, Alan Matsumoto, Alvin Wells & Kevin Winthrop
Transcription
Hello everybody watching, the COVID town hall here on RoomNow. I'm Jack Cush, the roomnow.com. I'm joined by five of my friends, expert panelists who I've asked to, join us because of their each, different but unique perspectives on practice rheumatology and dealing with this particular pandemic and how it affects us in rheumatology. I'm joined to my left by Doctor. Alan Matsumoto from the Arthritis and Rheumatism Group in Maryland.
Is that right, Alan?
Yep, yes, Maryland and Washington.
And then Cassie Calabrese from the Cleveland Clinic on my right. On the bottom row, have Alvin Wells from the Rheumatology and Immunotherapy Center in Wisconsin, Arti Kavanaugh from University of California, San Diego, Kevin Winthrop from Oregon Health and Science University Center in Portland, Oregon. Thank you for joining us folks.
Thank you, Jack.
All right, so I wanna with go the general format here is we're gonna talk a few topics amongst the panelists in the first half of this hour, and then we're gonna get to all your questions. So you're gonna ask questions, you can ask them using the Q and A button on Zoom. I wanna go around and start with Kevin on the bottom and ask my panelists to tell us how the pandemic has affected you. Tell me something good or bad, Kevin.
How much time do we have Jack?
I
think my complaint would be the same complaint we all have. It's completely changed our jobs. I now have a second career and I saw it in my old job. So everyone is by this, it doesn't matter what profession you're in, but that would be my gut response.
Arty. I think most things are negative and it's really shaken up our world. But, as I wrote yesterday in RoomNow, if you look there are a couple of bright things. I think people are nicer to each other. I think there's a shared communality, about dealing with with this incredibly bad event that we all have to get through.
That's brought out the best in a lot of
people. Alvin?
Tell you, I'm a little worried. I'm 59 years old. I did see one acute patient today. She had a fever and a cough. I put on my space suit and got to see her, but am I gonna get this virus?
Am I gonna be one of the ones that ends up with some crazy outcome? So that is a concern I think and all of us have and that's what our patients are relating to us as well. Alan?
So, know, I think that the, again, it's mostly bad that dealing with the near complete shuttering of our clinics and the responsibility of continuing to try to provide care for our patients, keeping our staff safe. And last, how to figure out whether or not we're going to be financially solvent in the months ahead.
Cassie at the Cleveland Clinic, what have you, what's worrying you?
Well, everything's very different, very weird. Scared that, you know, when is this going to be over? Is anything ever going to be the same again? Lots of anxiety, lots of fear, this virtual world with our patients. I've had a lot of meaningful conversations with patients about their anxiety and fears and also in home life, friends and family, I think everyone's really banding together, people checking on each other, touching base with people I might not have touched base with in a while.
I think everyone's really also taking care of each other in this bad and scary time.
So that's a really important comment. And that would be sort of my initial takeaway is that, boy, there's a lot of people looking to each of us, both on this panel and who are tuning in for answers and for some guidance. And we're not gonna have all the answers this week, but we know that we're gonna be smarter in two weeks and in two months and whatnot, but I think we need to lead or be led, during all of this. Let's start with another question, and maybe Alan Matsumoto, you could address this first. What's the most common question you're getting and how are you responding to it?
I think the biggest question is, what do I doc, what do I do about my medications for rheumatoid arthritis? Do I stop methotrexate? Do I stop my biologics? And I think for the most part, I'm encouraging them to continue because of the concern of what a flare would mean in my patients.
Cassie, what's the most common thing you're hearing?
After that question, even something as simple as should I come in for my visit? It's a question we get every day, should I come in? Do we do a virtual? I think everyone across the board is probably doing the same thing, encouraging everyone to stay out of the clinic unless they need an infusion, which I still think is important for patients to keep their scheduled infusions to prevent disease flares and risk for, you know, need for prednisone and more exposure to the healthcare system. And we're learning that a lot of things can be done over the phone or over a face to face visit.
Alvin. I'll echo both of those responses. One of the other ones that I'm seeing all the time say, hey, Doctor. Wells, I was on Plaquenil several years ago. I stopped it because it wasn't working.
I have a side effect. Do I need to go back on that now? So we're getting that all the time. And for the ones who are on it, am I gonna be getting my prescription filled?
Yeah, all of a sudden the COVID crisis has turned the non compliant black widow patient into someone who's incredibly compliant overnight.
Exactly. Yeah,
Artie. The same, same thing, but I would, I'd say a variant of that. Am I immunosuppressed? And that's a deep question. As scleroderma patient who is on no immune modulators, but is she immunosuppressed?
She said, should I be working in the hospital as a nurse as she was? What about someone who is on a therapy but has no systemic inflammation whatsoever? Are they better off? Are they less immune suppressed if they have absolutely no inflammation and the disease under perfect control? Or if they had stopped the therapy and then they're inflamed?
I think that's going to get to the discussion of what do we do when we're thinking about treating patients who already have COVID and have the cytokine storm, for example. But I'm getting that from all the patients. Am I immunosuppressed? And it's not always clear.
Kevin, are you hearing anything different?
Yeah, I hear all those questions. They're all good questions. I think I'm being asked a lot of questions by not just patients, but all those old friends that Cassie mentioned coming out of the woodwork from college and everywhere else saying, two things. When do we know we flatten the curve or when are we gonna flatten it and when we can go back to normal? I mean, are the things I'm being asked daily by people in our profession and outside our profession.
Of course, I don't know the answer to those things, I think my gut is that we're not gonna go to normal things are gonna be changed. Not all in a bad way. Some of these things will be good for the future, but we're not gonna go back to normal. We're gonna have this social distancing in place for months. I mean, is not a two weeks, but this is probably three or four month deal.
And then it may happen again later in the year. I think people just need to be prepared that we need to specialize differently and kind of change our practices.
So I want to tell the audience that both Kevin and Cassie are infectious disease specialists. Cassie is a rheumatologist and has done an ID fellowship. Kevin is an ID consultant who's worked with the CDC who seems to do a lot of rheumatology work. Thank God for all of us that we have Kevin as a friend. And so that's one of their main help in being a part of this program.
I want our panel to address the issue of what adjustments you've made in your practice and how practice has changed. I assume everyone is doing remote visits, but what are the major adjustments or important adjustments that you've made in your practice? Let's start with Alvin.
Yeah, I mean, has been a dramatic change. So this is Thursday. By this time, I would have seen 75 or 80 patients. I've only seen two patients actually in the clinic, a uveitis patient on Monday and a vasculitis patient today. That's the one I mentioned that had a fever.
We've gone to telephone calls. We've run-in, not all of our patients have internet access, so telephone is going to be important. And then doing virtual visits. In the past, I would do about two or three virtual visits a day. Today I had 10.
So we're doing those now and just kind of wrapped it up. But also on the staffing side, you know, some of my staff has been furloughed, one of them is now being quarantined because of a cough, she hasn't been screened yet, but all those different things. Then everybody's all anxious, you know, are they gonna get paid? If they get sick, is it workers' comp? And all these different things.
So on the staffing side, but also how we day to day visits with outpatients, virtually telephone calls, and only in couple of few cases where we really need to be seen, I need to lay hands on them to get them treated. Like the uveitis guy, he got a couple injections before he left the clinic because of the flare.
Marty, what adjustments are you making?
Well, I mean, going to the video visits and the telephones, and sometimes they work, which surprised me. Sometimes they're just not the same. You just cannot get the information you need from a virtual visit. You really need a visit. The other thing that I've started to notice more is as Kevin said, were thinking, okay, a few weeks we'll be back to normal.
So that's when that patient can get a chest CT and then the other patient can get an MRI and my other patient can get the other aspects of their normal medical care. Everything's been sort of postponed, but you can't postpone everything forever. So I want everything to be back to normal. I just don't know when it's gonna be.
Kevin. Yeah,
I agree with Arti totally. And it's funny, Alvin, the only patient I saw today was uveitis patient's TB. I mean, there's certain things that you just gotta see, can't look in the eye virtually. I think some of these visits, I mean, in my D clinic, we've gone totally virtual except for cases like that. And I think that in some parts, this is gonna be good to change practice.
We're gonna do more things virtually in the future. But I also, I don't want patients to think that a virtual visit is a visit in person because it just isn't. It's not quite as good and I think to stress that.
Cassie?
Yeah, I echo all those things, going virtual as much as possible while still really trying to do right by patients that still need our medical attention. I see a lot of cancer patients who are receiving immunotherapy and develop these immune related adverse events and you know, patients are still getting cancer and receiving those treatments and they're coming into our cancer center and trying to decide who actually needs to walk over from the cancer center on the day they, you know, were scheduled to come in and and see me versus doing it virtually is sometimes a tough decision to make or also those patients that we've been waiting a while for their musculoskeletal ultrasound that was scheduled for tomorrow. Do you still want me to go get that or can we postpone that? So sometimes tough to decide what to postpone and what to do virtually. And also being at an academic center, hard to think of sometimes, but trying to keep education alive for our fellows who had their journal clubs and things scheduled and doing those virtually every morning has been something interesting that seems to be working so far.
Doctor. Matsumoto.
I think my staff has worked very, very hard at trying to maintain the social distancing of our patients. So patients who come in for laboratory tests, come in on a schedule now. They're often asked to wait, in their cars before, coming into the office. Our infusion suite has spaced out all the chairs as best as possible to make sure that there's appropriate distance. And all patients get calls the night before to ask about symptoms, to make sure they're not symptomatic.
And again, are asked before they walk into our offices in the patients that we do see. It really has been an incredible effort on my staff, by my staff to do that.
Alvin. Yeah, Alan, you brought up something to make me think of a quick comment. I heard one of my colleagues say instead of doing the infusion suite now, so now they use in exam rooms as an infusion area. The patients are actually isolated. You don't have all the patients coming in.
Our colleagues on the line, you can have individual patients in the exam rooms to get their treatment as well. So that's one way we kind of do isolating.
That's good idea.
I think we're all practicing differently and there's a lot of things we're not doing. We're not doing injections. We're not doing things we would otherwise deem as elective. We're holding off on sending patients for, imaging unless it's absolutely necessary. I mean, all of our imaging departments have given us directives about that.
Anybody else have, the I'm not doing any more story? Okay. Well then, let's move on to, what I think is a, I want each of you to ask a question of your fellow panelists. And it could be someone, a directed question, or it could be just a general, question to the group. Artie?
So I'm gonna hit Kevin up before everybody else does because I think everybody's been asking this. So Plaquenil is the, of course, it's the hottest thing. It works in vitro. But I was reading something that said, well, it's the sham wow of medications. It cures Marburg.
It cures influenza A. It cures COVID. Yet, they've only tested it in influenza, I think, and it didn't work, even though in vitro it should. So is this all jazz hands that we're seeing based on a report that was just minimally that had so many, issues with the study design interpretation? I if it wasn't in an emergency situation, you would totally blow it off and say that small report should never have been published.
Yeah, you're talking about the French report?
Yeah.
So I totally agree. I mean, some data there that has made optimism, but there was enough problems with the study as you just mentioned that it's really hard to conclude anything. And there's been negative reports from a small study in China and another study in China that maybe show some benefit. Mean, none of these are the kinds of steps that you or anyone on this panel would, you know, would stand up and say, hey, I just did this study my results. I mean, So it's, I think it's really hard to know.
And I write a lot of compounds in the beach that either theoretically should be antiviral or actually have been destined to be antiviral in vitro yet when they've got humans they have an effect efficacy. So, I think the jury's out just like you said, I have a lot of concerns about people using it such that people who are others are getting it or all your patients. And so I definitely support the trials looking at it and I think we should look at it. This combination with azithromycin. It's interesting like I have tons of patients on azithromycin for infectious diseases and yeah, I've always people getting refills this week who can't get them.
This type of usage without, you know, a lot of data behind it can create some bumps.
So the, I don't think anybody has a problem with someone who's actually infected and sick and in the ICU getting hydroxychloroquine. I think the issue is giving it to people who you think might could have it or don't have it or prophylaxis. That's obviously a problem because we're Let gonna run out of this in me ask Cassie, do you wanna comment on azithromycin? And it seems to be getting more play. And interestingly, out there are comments like, well, given the danger of hydroxychloroquine, what?
You know, obviously people have never used it, right? But there are a lot of people who are quickly going to the drug they know, which is azithromycin. So what's your take on them?
Yeah, you know, it's a good question. And there's so many, you know, unanswered issues about this and the hype about the azithromycin plaquenil combination is from that Marseille study as well. You know, I'm not as excited about azithromycin in the absence of, you know, a secondary pneumonia. And a lot of the patients that we have admitted to the Cleveland Clinic are getting treated for pneumonia and end up being on azithromycin or doxycycline or others. But mechanistically, I think we need more information to just slap everyone with azithromycin and Plaquenil at this time.
Cathy, do have a question for anyone?
Yes, I do. I want to ask also Kevin a question. What do you think about this universal masks, this idea? Do you think it was a good idea, bad idea?
Idea here, Kevin, is it a policy of universal masking? And does that relate to health care workers or even patients? Go ahead Kevin.
Yeah, I mean, we should get my wife to come back to us here and you could ask her because four weeks ago I said, why aren't we all wearing masks? And then I know why we're not all wearing masks because we don't have enough masks. And that is the reason why that recognition wasn't made, you know, four or five weeks ago and that's it's a huge problem. I mean, the lack of lack a mass and the ability, the inability to produce them when we need them, it's all been a problem. So that's been the reason why that recognition has not been given.
I mean, look at the data from all these other countries which trying to do, Singapore looked like they did a good job and China, you know, we're trying to extrapolate from these other experiences to our country, which I think is hard to do. It's like RCT data from Japan versus RT data in Kansas, you know, totally different experiences. One thing that allows Asian countries is mask use. I mean, pretty much universally, all those people wearing masks, it makes sense to wear a mask to me mainly and primarily because people who are infected either static or asymptomatic probably are going less efficient spreaders. And that was, know, four or five years ago why I told my wife, I think we should be wearing masks because we don't really know who's infected and who's not.
And I think it would be beneficial. But again, that recommendation wasn't made due to the fact that we didn't have enough masks. So now here we are, we still have enough masks. Now we have recommendation. I think it's, I consider now that we don't all need N95s on in the community, which was not clear four to six weeks ago or less clear.
I think people buy surgical masks or probably protect masks know, out in the community, might, all by, you know, diminishing spread of virus. So that's kind of my thoughts on it.
So, I wrote about this today in RheumNow about the universal mask issue. A key issue is that if it's being used outside the hospital, just don't use N95 masks. We need those for healthcare workers, but there may be merits to it. Alan, do you have a question for anyone?
Yeah, I'd actually like to ask, maybe both of our ID specialists, and this is about a case that came up, recently in our office. A patient called with, symptoms that were very suggestive of having a COVID-nineteen infection, And she was not tested because of the lack of ability of testing. And the symptoms have resolved. At what point do you feel comfortable bringing that patient back into office for her Remicade infusion, both for the safety of our staff and also the safety of her getting a Remicade infusion?
That's a really great question and actually one that was discussed in our department yesterday. And I think we might in some way extrapolate from when we say it's okay for an employee to come back to work like an health care employee, which would be, you know, three days of no fever without fever reducing agent, seventy two hours, improving symptoms, you know, fourteen days from start of symptoms and if still symptomatic beyond that point to wear a surgical mask, you know, if they absolutely have to come in for their infusion. And for healthcare workers, they'll get two nasopharyngeal swabs negative 24 apart, apart, which I don't think probably is gonna be practical for patients, but just going by the the defervescence criteria and the time from onset of symptoms and then still wearing symptomatic, even though they've improved as probably
So a quick follow-up to that is that all this evidence that you continue to have documented virus fourteen days, I've even seen thirty two days after the infection. Does the three day timeframe bother you a little bit?
The well, it's the three days with no fever plus the the I think for our healthcare workers at seven days and improving symptoms. But I have seen that data about persistent, you know, positive virus for many days out, whether that's, you know, viable virus or people can still get infected at point we just don't know but a very good question and I don't think there's probably a right answer right now.
Yeah there's no right answer. Mean the only thing I can ask you and I think some of those recommendations as you mentioned in some of that is geared towards or it's Look, we're going to have a healthcare shortage right and we're willing to probably let healthcare workers get back to work slightly earlier than we are maybe someone who to get their Remicade infusion so more conservative than that. I mean, we just built through a trial today in terms of when to let them back in a study to get a fusion. I mean, I would say and I, again, I'm with Cassie, I don't know that there's right in, but if you look at the shedding, yes, it is pretty long. There is data that shows that the virus is liable in culture after seven days.
So even people who are shedding two weeks after, they're probably less likely to be transmitted or to be actually at risk getting sick from any remaining virus. So my recommendation at this point is to get some moving target change next week, it's resolution of symptoms and then seven days seven days post resolution of symptoms. I think that would be consistent with with the viral culture and data and you know kind of CDC has been reckoning. You know people in general, that's the seven day period after resolution systems is maybe an important period where people can still be transmitting.
So, Alvin, do you have question for the group?
Yeah, two quick questions. Already first to you. So I had a resident who was gonna start April 1 and we just called and said there's no patients and I need to do the phone call. So we sent him home and it really was nothing to do. So he's doing some stuff inside the hospital.
And then Cassie, a quick question for you. So this week the FDA approved a fifteen minute test from Abbott. I knew about the real time PCR, but how, what's a fifteen minute test? I'm trying to figure out how it works and maybe you can help me out with that. But Artie, your answer first.
So yeah, the training and Cassie touched on this, that's a big deal, for the students, our students too. They're just been told to stay away and there's so there's gonna be a gap We're a little bit more worried for the fellows Are you know they are they gonna finish their fellowship those who are supposed to finish in June is the ACGME going to say, hey, you know what? You haven't been in enough clinics lately, and you didn't do enough of the additional projects that you were meant to do through no fault of their own. So I think this is going to hit fellows a lot more than the residents because they're too, they're coming to the end of their year. Will they end up with any so called deficiencies in the things that they needed to do to graduate?
Cassie?
And about that real time PCR test, I think you're referring to the RT PCR that's going to be, I heard rolled out at the clinic next week, that is being referred to as real time but it's my understanding that this still has to go to the lab and be processed and can be run very quickly but we won't be getting results for three to four hours. Five days. Transport time. Yeah. Five days, three to five days.
But what's being called real time is something that's actually gonna take a bit more of time because it still is not happening at real time at the bedside, but it's going to the lab and then being resulted.
Okay. Folks, want to I I think many of you know about the Global Rheumatology Alliance and the registry. It's been established in lightning quick time led by Philip Robinson from University of Queensland and Doctor. Yazdani from UCSF. This thing is up and running where you, the rheumatologists are enrolling patients of yours who have been infected or suspected to be infected right now.
Only operational for a few days, they've got one hundred and ten patients enrolled. Is seventy eight percent female, eighteen percent over the 65, thirty six percent rheumatoid, seventeen percent both with lupus or with psoriatic arthritis. Over seventy five percent of patients that were enrolled were in remission at the time of being enrolled. Thirty five percent have been hospitalized. There've been five percent deaths in this group.
So it's quite sobering. I think it gets to one of the biggest issues that we're all dealing with. Are our patients really at risk? If our patients were at risk, like everyone has said, the immunosuppressed, those on immunosuppressants, would we see a lot more hospitalizations and problems amongst our patients? I would like to go around the horn and get everybody's quick thirty second impression.
Kevin, what do you think?
Well, first of all, this effort's unbelievably important and I'm so glad they're doing it and they're gonna generate a great data very quickly. I am struck by the paucity, emailing colleagues around the world and in some case finding on the ID side similarly, but I am struck by the paucity of reports on biologic name it, all your drugs, the policy of reports types of individuals in the hospital, as compared to similarly aged comorbid people in the hospital who don't have those drugs. So I don't, I expect some of these drugs may be a risk and some might not be and might be protective. Of course, we're gonna figure this out in the next month or two, but I'm struck by the lack of those folks. And I already asked a question or maybe you did, you know, how many are these individuals?
My read is your patient population, their greatest risk factors right now are their age and their comorbidities, their cardiovascular disease and their smoking and their lung disease. Those are probably what's driving the hospitalization of those individuals.
So I wanna throw out the numbers I meant to add here before this question, which is recent reports show that if you're 55 to 64, there's a one point four percent fatality rate with infection. If you're over age 65, and this is all patients, not our patients, if you're over age 65, it goes up to two point seven, almost doubles. If you look at those who have these other comorbidities, a heart disease, chronic lung disease, and diabetes, there seems to be about a threefold increase in really bad things that happen. Those who hospitalized in the ICU, it's two percent if you don't have those things, it's seven percent if you do have those comorbidities. And there's similar kinds of numbers, but it's very clear for diabetes, heart disease, and lung disease.
But I'm questioning, is it so clear for our rheumatic disease patients? Arty?
Yeah, I think that what that highlights nicely, Jack, is the heterogeneity of our patients. And I think we have to do it case by case. We can't even lump a disease and you have different diseases, different levels of activity, different treatments. We always forget to mention prednisone which is you know that that's the bugaboo that I bet at the end of all this is gonna show up as something bad. So our patients are so different one to the other.
I think we really have to individualize the approach as best we can. Alvin?
So yeah, I mean based on my opinion, we've got a lot of patients. I mean in my database over 13,000 patients, a lot of them as you know, I'm very aggressive with these drugs I'm just not getting the calls. I'm underwhelmed. In analogy, I tell my patients that when the immune system is preoccupied causing the inflammation, causing your psoriasis, your arthritis, your lupus, that's the time a viral cell or bacterial cell can wreak havoc. So we tell a lupus patient, You get a fever, I'm treating for infection, but I'm also treating your disease.
And that's the kind of the caveat that we see. So right now, we're just not getting it. What we've done, we've to do an Epic. We have already set it aside. We can actually go through and screen people on my hit list of my top 10 drugs that we think might be a risk.
And right now we're just not seeing anything coming through from the emergency rooms or urgent care.
Alan, you have a very large group in the DC area. What are you seeing?
Yeah, so, unfortunately, just to, I had to put one of my patients on that registry yesterday. And just to give a shout out to the registry, it was extremely easy to use and really well thought out. But I literally have the only case among my 20 partners who has a documented case. So that's the anecdotal evidence. We're Maryland and not New York City or California.
So I think only we'll know in time. But I do want to pose another question about whether or not our drugs increase your risk of getting the infection. But once you get the infection, do they change the course of the infection? Are they less likely, for instance, to be on a ventilator or have a disastrous consequence? I wonder whether or not people would weigh in on that one.
Yeah, it seems like this is where the registry is going to come in really helpful in telling us us the answer. Don't know that anybody's got enough experience to answer that. Cassie, what's your opinion about this question?
It's a important and great question. And you know, we think our patients are immunosuppressed, they must be at increased risk for getting this infection. But I don't actually think that we have any, you know, data to suggest that right now. And like Artie said, it's probably more of a individualized, you know, rabbit risk calculator type thing. What else is going on in our patients?
Are they on steroids? Do they have chronic lung disease? You know, have they had other serious infectious complications? And, you know, we have a bunch of cases at the Cleveland Clinic so far, two cases to contribute to the Global Rheum Alliance. And we really look forward to the rest of the results from that and what we might learn.
But I've been I was interested to see the results from the registry today about the patients who are on Plaquenil who have developed COVID-nineteen. It didn't seem that they you know did better or worse than anybody else. And today, interestingly, one of our ID pharmacists brought up an anecdotal observation that patients with HIV who are getting COVID-nineteen seem to do okay. Whether that's because of their immune status or because of the medications they're getting, it's like very few numbers, who knows, but lots to think about.
Yes, fascinating. So let's go to the questions from our audience. Eugene Fung in Waco asked the question, is there an issue of the timing of hydroxychloroquine use? Is it more like, and how long should it be used for? So it's, you know, our patients are on all the time, but if someone goes on hydroxychloroquine, what's the course of therapy and should it be given at a certain time?
Anybody want to jump on that?
Yeah, I'm
wait, Cassie, if we tell our patient takes a long time to work for our diseases, but what's the data? How quickly does it work and prevent this exaltosis of the viral? Is it takes months and months or will it work quickly?
We don't even know if it works. I Yeah,
I think we, you know, are really anxiously await clinical trials that are gonna look at this. You know, it seems I'm all for, you know, sick patients in the hospital getting Plaquenil. It's a low risk drug. You know, we and our center are giving five days of Plaquenil to patients that are admitted with COVID-nineteen and they're getting eight hundred milligrams on day one and four hundred milligrams for the rest of the four days. But you know, whether that's the right dose, or the right timing to give it, we just you know, to stay tuned.
So we have a question, from Queensland and that is that they, have a lot of talk around patients who are on biologics or therapy or are targeted synthetic, DMARDs or combination DMARDs are at risk and therefore should not go to work. Arty, what are you telling your patients who are on these therapies? Should they get a pass and not go to work?
Well, think with the social distancing, we really are trying to keep the exposures down to try to prevent that one person who could be infected from spreading it. And I saw this analysis today. It was very nice about the risk of spreading and the number of people you encounter. And it's all about the number of people you encounter. But again, I think it's sort of individual.
If the person was working and there's one other person in the office, that's just as good as being at home. If working in a crowded place where they're gonna have to be in close contact with people, I think I would say that they maybe should get a pass.
Okay. One of the questions that came up, Kevin, you wanna say something on that?
I was just gonna add, I've been writing a lot of those letters for patients, they're healthcare workers and they have high conditions and they're a nurse and they're worried about working. I wrote one for someone who's a nurse at nursing home the other day, they're 70 years old, they have chronic lung disease, diabetes, maybe plus or minus, they probably should not be in clinical situations where they might encounter COVID. So I think it's try to redirect those high risk patients to other jobs or home in that space for a while.
Anybody else want to address that?
Yeah, can I chime in? I've had a patient got mad at me because I refused to do the letter. She had to go to work. It was one of the situations where she couldn't, you know, stay at home and she was on one of my drugs and she just wrote back through me in Epic saying, Hey, if I get sick, it's your fault. And then, so she really got mad at me, but she had no risk factors, asymptomatic, but a boss was requiring, she came to work and wanted me to get her off.
I didn't, they couldn't justify that, but she really got angry.
You know, about eleven days ago, maybe a little bit longer than that, I got the same kind of request. The patient called, said because of this, the patient heard there's gonna be a shortage of all drugs because they're all made in China. Can I give her a ninety day supply of all of her medicines? And I came back and said, no, that's goofy. We're not gonna do that and whatnot.
And I had a revelation actually about five days later and I was wrong. I think I should have actually spoken to the patient. And I think on one hand, we need to tell our patients whether we think each individual is at risk or not, and they're not necessarily at risk because of these diagnoses or because of these therapies. It's steroids and how old they are and how sick they are. Those are the things that really got a way into this.
But I like the Bush administration came up with guidelines for dealing with disasters. And there are some tenets of that guideline, started with, you know, being right and being credible. Second was showing respect. Third was patient safety first. And lastly, promote action.
So with my patient, I think I should have given them a ninety days prescription and explained to them, I don't think this is gonna be a problem, but let's go ahead and do that, because you wanna be in a partnership here. You wanna support people who are really very freaked out about this whole thing and what they're gonna do about it. So I think sort of siding with the patient as much as we can is gonna be important. Of course, patients who are gonna stay home, they might lose their job. And I mean, it adds to the whole financialness that we're dealing with.
Al, are you seeing much of this in your practice?
Yeah, I get these letters every day and I am torn. And I think it's very similar to a patient's asking for disability. And I think we're torn because we're torn between, in some cases, healthcare workers that are needed and being supportive of our patients. So, it does put us in a very difficult position.
It really does. Okay, so, how are people handling, we talked about infusions earlier, spacing people out as, Doctor. Matsumoto said, Alvin Wells talking about using exam rooms as infusion places. Eric Ritteman had a great blog and video on this. What are we not doing?
Are we doing Prolia injections? And other easy infusions?
That's where the duration gets. Sorry, Alan, go ahead.
So things that I think can put off just because of logistical issues such as reclassed and such are being put off. The Prolia injections that used to be given by our nurses are now moved down actually to the doctors, the one doctor that's in the office. So they've been given by doctors in private rooms. So some of that is continuing. You know, I think initially when this problem broke, we thought about perhaps just prolonging the infusions.
But now that this has gone on and there's really no end in sight, I think it's really hard to say, look, just keep on putting off that infusion for rheumatoid arthritis. So I think, and when patients are given the choice, I think many of them are choosing to come in. I think our infusion schedule is actually fairly busy. Marty? Marty?
Yeah, I think exactly that you brought a Prolia and said, well, you could put that off. You don't want to put that off for six months. Absolutely not, because then you start to lose the benefit of it. So when it was a couple of weeks and he said, oh, let's get your power through this month. But now as it gets longer, how many of our medicines are not important?
I don't know that any of our men are we using unimportant medicines? No. I think we all use medicines all the time that really do have a role.
I don't think we have a
lot of unnecessary medicines. So it's really, it's a tough decision to skip them.
So another really tough issue we're dealing with, is now we're getting notices from our infusion centers and pharmacies that, sorry, Charlie or Charlene, you're not getting your Actemra infusion. That's all on hold. We're saving it for all the might could benefit in people hospitalized with COVID or cytokine storm syndrome. And so it's now gonna be unavailable to a lot of our patients. How are we gonna handle this?
And what's your, do you have a plan for your patients? Cassie, have you dealt with this yet?
Yeah, we have been giving tocilizumab to our sick COVID nineteen positive patients in the hospital and we have set aside a supply for these patients and future patients and kept what is anticipated to be needed for the, you know, CAR T cell patients and then our patients who are already on it. Having said that, our inpatient supply for the COVID-nineteen patients is dwindling very quickly. In our department, are new starts to Tuslimab has been restricted to subcutaneous for now. And I don't actually know if that will parlay, if the need for IV tocilizumab is going to parlay into a shortage of subcutaneous tocilizumab, I'm not entirely sure. And then also other IL-six inhibitors, sorrelimab, but we are definitely running into issues with the need for tocilizumab, both for our patients and for these COVID-nineteen patients which I'm sure we'll talk about.
Where's cirucumab when you need it?
Well, can easily move people over from the subQ to the subQ form of this, but the problem is a lot of those patients who are getting these infusions are Medicare and there aren't many options for them. So, Alvin, did you want to address that?
Was a quick question I wanted to say. So we did a call last week with Novartis about the issue, and one of the things they're doing as a company, they're donating 1,300,000 doses of tocilizumab around the world for treating these COVID patients, and they say they have enough drug in stock to cover the demand for two years. The drug is made in France and Switzerland, so they're not concerned about the supply. The thing we see in our area now, the IV patients now are going to home infusions. And Jack, you and I had a conversation with one of the companies last week about, hey, will there be a change such that Medicare say, if you have an IV to sub q option, Medicare will need to cover both options.
Patients should not have to go to the hospital when you got other options. And I think that's one thing we're gonna see change coming out of this crisis.
Alvin, you said that the drug was donated by Novartis. I think you meant Genentech?
I just said yes, yes. Yes, Genentech, yeah, Farley.
So Doctor. Scopolita sends in a good question about a lupus patient. And you know, the question is, what do you do with your patients that need to go on new therapies and whatnot? There seems to be a prevailing view by some rheumatologists that let's just not start any new hydroxychloroquine. Let's not start any new immunosuppressants right now.
Is that a good idea or a bad idea?
Well, I think you got it. We just had a patient admitted and it was severe lupus, just relatively new. Wanted to give her rituximab, super bad arthritis and cytopenias. And the hospitalist said, well, we have to have a negative COVID. And you can't argue.
But I said, no, we're absolutely going to treat her. I mean, her lupus is going to ruin her while we're protecting her from us treating her. And so we jumped in and got her the treatment. But I had to bring those other doctors along. Anyone else dealt with this?
Yeah, I've had a lot of patients ask when we're having a discussion about escalating treatment or starting treatment if now is maybe not a good time to do that. And I've really been trying to avoid making decisions about treatment based on the what ifs, you know, not preemptively stopping therapy and not deciding not to start a therapy because of COVID-nineteen. Certainly if someone is gets sick or symptoms, that's a different story. But I've been trying to not let that guide treatment decisions for patients that need either new therapies or change in therapy for active disease.
One of
the things
we've done
Go ahead.
The small specialty pharmacies, they actually have it in supply. So I've actually found out from them that why don't we call, they have two hundred doses of hydroxychloroquine in stock. So if you don't have it at Walgreens or CVS traditional ones, the local specialty pharmacies are ones you can reach out where they have some may probably stop.
So I made a difficult decision recently about putting somebody on rituximab for GPA. And it is absolutely a gut wrenching decision, but I think in her particular case, the clinical aspects of that disease. And the other thing that I fear is that if any of these patients become sick enough that they need hospitalization, they may not be able to have an available hospital bed. And that's frightening.
Yeah, that issue and the other issues what I already mentioned. I mean, what are the alternatives? And if it's high dose steroids or big steroid tapers, I'm not excited about that.
So a patient has gone through a Corona infection and would you start them on a biologic after they supposedly have resolved their infection?
Seven days after they finished Seven days after stopping having symptoms.
So it's no longer the scarlet letter, it's actually treat them as you would normally treat them. Is anybody worried about the cardio toxicity of hydroxychloroquine or chloroquine? It seems to be very overstated in the literature. Marty, what do you think?
It's interesting because this has come up twice in the past, just before COVID, it came up. We had a couple of people in house with cardiomyopathy and they both happened to have been on hydroxychloroquine. And they had 12 other reasons for cardiomyopathy. But you can't say that there's no risk. There's some really old literature where back remember when articles used to be full of histology, with arrows pointing at who knows what and, but there's no way to prove it, so in both cases we end up saying we have really don't think that this is contributing at all but, in the bigger picture of things their diseases were mostly years back.
They're in rheumatic disease. So we ended up stopping it. So now, yeah, when you read stuff, hydroxychloroquine has a whole laundry list of urban legends of things that I don't ever know that it ever caused cardiomyopathy, the anemia, I, you know, the flare of psoriasis in PSA patients. I think there's a lot of things that, you know, people talk about I don't, I've never seen.
Let me ask our panelists. Let's say you're sick. You've got a fever 101, you got a cough. Are you starting yourself on hydroxychloroquine? Alan Matsumoto.
You want heart failure? What are you crazy?
So that's a no Alvin.
Absolutely yes. I have some hydroxychloroquine and I have azithromycin. I've got a family to take care of. I've got patients to take care of in a busy practice. So absolutely.
Al, are you?
Yeah, I think it's not unreasonable even though I just trashed the data. I don't know that I believe it, but I also just said, I drive Scloroquine so safe.
Kevin.
I'm just loaded up on NSAIDs, Jack.
Totally dispelling the whole French government's position.
I'm on losartan for my hypertension and perhaps it's protective. In fact, there's an RCT looking at losartan. Who knows? Mean, so many of these ideas and obviously when you're sick, the downside of many of these ideas is very small. And I think it's not unreasonable to try many of these things, so.
Cassie, what would you do?
Oh, take the Plaquenil. Give me the Plaquenil.
Should rheumatologists be doing inpatient consults?
I'm starting on Monday, so I guess I should be.
Hardy, you're on ward service. Are I you
think we have to. I think you could do as much as you looking at the chart, by looking at all the data that you have available to you so easily, but I think we have to.
All right, if we had universal testing, would you test all your patients and would it change your therapy? Alvin.
Jack, I think I would because just like I'm screening for the varicella titers, I'm looking at their QuantiFERON, I'm doing whatever I can to make sure that risk factor for getting these diseases is gonna be low. So like we say, we don't have the data yet to say if I put them on drug A, B, or C, is it gonna increase that risk? But these patients at some point will be immunosuppressed, they will get respiratory tract infections. And if I can eliminate one other thing and maybe mitigate that, the only caveat now is I don't have a treatment. I don't have a vaccine yet.
So but I think down the road, we will be shooting everybody with the vaccine once we get one developed.
So let me take a different view and say that I don't really want more information because more information tends to get me more in trouble over time. I would probably go along with the view that maybe we should wait until there's a reason to do the test before I would do the test. I that think is the current policy out there, but testing's gonna become a bigger and bigger issue. Anybody else wanna weigh in on this?
Well, think, and I'm not gonna, I mean, I hate to do this with Cassie and Kevin, but I'm gonna bet that when we get, data to show who's been exposed, that it's gonna be like eighty percent of the world. I think all of us have been exposed. So as you said, Jack, you get the test, what are you gonna do with the results? If you had somebody who never had a fever, never had a cough and their IgG COVID is positive, their IgM is negative, what do you do? I don't think you're gonna treat them differently, but I'd love to see that data.
Same.
Yeah.
Yeah, I'd just weigh in that, you know, a serologic, as already just mentioned, is not commercially available that I'm sure there'll be some pretty soon. There will be serologic surveys done, of course, to try to come up with an already just guessed at, you know, what was the prevalence of this infection when all said and done, but You know, I don't, and I think, look, if one if we had tons of tests and ordering tests and a problem and you could get reliable results back very quickly. Only having Certainly doctors need the ability to test people who are symptomatic, where the differential diagnosis is COVID. And I mean, that thing is acting, that's something now that we're all starting to get. And I think it's important to screening asymptomatic people is very different.
And the benefit risk of that is, you know, and everything tied to that really depends on the setting. I guess you can make an argument that Alvin was making that someone that you're about to be depressed, you do test them, even asymptomatic, so they don't have it. But we're kind of a long way off from that, I think, at this point, because we're testing people who are symptomatic. We'll have to see where it goes and I can see that maybe particularly as this on and on and the outbreak lasts for a long time that eventually you're getting your patients to this just like you do things.
Cassie, you want weigh in on that?
Yeah, I completely echo all of that. I think there are so many people probably walking around with COVID-nineteen with very mild symptoms or some people perhaps without any symptoms that we just don't know about and that regardless of separate from making rheumatic treatment decisions, we will not fully understand the scope of this virus until we understand how many people have it. So we need to test more people when we're able.
So as we switched over to this remote care sort of model that we're in right now, many people have struggled with how to do that. So we did a number of videos with Alvin. Alvin, I think has done four, well he did talk at RheumNow Live, he did three videos after that. I still get people asking me, we need more information on telemedicine. There's a question out there, how comfortable are you with doing a telemedicine or a telephone visit?
I wanna preface that by saying, I've always said that telephone medicine is risky medicine, it's dangerous. You really need to see the patient to know what to do. But now we're in an era where we're living in danger. So Alvin, how can you allay my fears of making mistakes by doing it all over the phone or by video?
Let me first start with the consult, because we work aggressively with that team now. So if a hospitalist calls me, already like you say, saw a patient today with cytopenia and all the other features, the goal would be to have the hospitalist on the line, they're in the room with the patient, I have the patient there and they get me. I'll walk them through the physical exam and it's okay, I'm gonna put a couple orders in on the Epic and based on that, I'll tell you whether we're gonna go steroids or rituximab. And then that patient, because I don't really need to go to the hospital to see them, expose myself and the rest of my patient with these diseases. The one thing I'm finding, Jack, is that we gotta get buy in from the patients.
Just like some of my older patients don't like to see the nurse practitioner or PA, they still wanna see me. I had one guy call today, he said he doesn't wanna call from the nurse or the medical assistant, he only wants to talk to on the phone. So once we have buy in from our patient, I think this is one of the changes we're gonna see moving forward that a healthcare system will change. We all, I think, like we said, the old days when you were screening patients, okay, based on these charts, I don't wanna see them in a clinic, you don't get reimbursed from that. Take fifteen minutes, evaluate that patient.
Hey, that back pain and a positive ANA of one to 40, that's not lupus. You don't need to see me. And by the way, I can send off a bill for that. So those simple things you can do. And the telephone calls I've done this week and last week is that the Medicare patients, hey, I just wanted to check-in.
I want some reassurance, etcetera, etcetera. Do I need to get my labs? Now the methotrexate labs, we're forgetting about those. We're just following patients the longest we go through. So I think one change we will see is that we will feel comfortable.
We gotta get buy in from other doctors. There's some articles out there, the primary care and the hospital is a concern that's gonna put more pressure on them to do the things that they do. But I think we'll see some change and we're trying to work very aggressive with that group to kind of start that mainly with consults.
Anyone else have experience that they can impart upon the audience with telemedicine?
I think, Jack, certainly physicians of our generation feel very uncomfortable not being able to do a physical examination because it goes against everything we were taught, everything our mentors taught about the proper evaluation of a patient. But as I do more of this, I think it is a skill set. And like any skill set, the more you do, the better you're gonna be. And I think we have to accept that reality.
Agreed, that's really important. I'm glad Kevin's able to tune back in because we're getting a lot of questions from the audience. Maybe Cassie, you wanna start with this, but the question is someone who's been positive, and let's say most of these again 80% plus are gonna be at home and resolve, how long before you can resume the biologic therapy that they were previously on? I'm assuming that many of us would probably stop that while they're sick. I don't know that I would because the half life is too long to really stop and it's kind of goofy.
But nonetheless, are some people who had, I think we're taking objection to what Kevin said earlier about you can go buy a serologies and then start right after. But Cassie, how would you handle this?
Yeah, that's a tough question as well. And I agree, certain drugs, what is stopping them for a little bit even gonna do. But I agree I would stop, you know, biologics for sure and methotrexate if someone were infected. But I think, you know, after they recover and echo what Kevin said, you know, seven days after, you know, illness is over and symptoms are gone, I would probably restart their immunosuppression. They were completely recovered and doing well.
Kevin, can you defend timing issue?
Yeah, I mean, think again, it kind of goes back
to what
we were saying before. It's consistent with, you know, the viral shedding data in terms of the viral culture data in association with shedding, you know, after seven days, the virus becomes a lot less, viral. You know, CDC's guidance has been kind of around this symptoms resolve seven more days, and then you're pretty unlikely to be transmitting and likely unlikely to be, at risk for infection. I think, you know, I don't, I think if someone's symptoms resolve, I mean, the chance that they're shedding at that point is very high. They could still be infectious.
And again, I think that seven day period is the buffer where that goes away. So how does that translate to when it's okay to give biologic again or their next dose? It may be fine to do it in that seven days. I mean, they may not be at risk getting sick, but it might prolong their shedding potentially. We don't know the answer to that question.
So for right now, I'm still kind of stuck on this seven days post symptom resolution.
So let me give you a case from Doctor. Laster. This is a psoriatic arthritis case who was off of Humira since January for a total knee replacement. Soon after the patient tested positive for SARS CoV-two, after they developed symptoms of shortness of breath and low grade fever, having been exposed to someone from Brooklyn figures. And then two days into the illness, remind you that they stopped their Humira back in January, the patient's doing horribly worse with their skin and joint disease exploded.
So now the patient could barely get out of bed with excruciating pain. The skin is horrible. Wish we could have used the biologic. What should I do? Can't use steroids.
I don't know that I ever would have stopped the TNF inhibitor because you have this infection. If you're in the ICU, you can stop it, but that's stopping it on paper because you're not getting rid of it. It's still there, there's no negative reports about what TNF is doing in these situations. Until we know better, I would not stop it, and obviously the practice of stopping the Humira for two or three months surrounding a knee replacement sort of idiotic and should never happen. Anyone else have some advice for Doctor.
Laster on how to manage this case of psoriatic arthritis?
The patient was asymptomatic, Jack, or?
The patient had symptoms of low grade fevers, a cough, and aches, but then because they were already off of the Humira and enalumumab, their skin and joints got a whole lot worse. Probably has nothing to do with the timing of the COVID infection, but it's obviously confusing the issue.
I think it gets back to what Alvin was saying before. You have a person who's going to be sick and bad things are going to happen from the extent of skin involvement, from the immobility. So, with this type of, now if you had TB, yeah, no more TNF inhibitor. But for this infection, I think getting back on the TNF inhibitor seems to be the the best alternative.
Let me throw out another thing. What about the JAK inhibitors? You know, the article in The Lancet saying that maybe, hey, they've identified maybe one of the JAK inhibitors might prevent these blocking the receptor on the lung epithelial cells prevents infection. So one of the ID guys wanna weigh in on that. What about a JAK in that case?
Yeah, that's a really good question. And you know, JAK inhibitors and their effect downstream effects on IL-six, I know are being considered as for treatment of COVID-nineteen and yeah, maybe put that person on an IL-six inhibitor, a JAK inhibitor.
Yeah, agree. I mean, I think so baricitinib is the one JAK that theoretically would prevent infection, right? By inhibiting the ADP two kinase system. And again, it's theoretical, but there's other drugs like that as well as losartan, there's a whole list of them from that Lancet article you mentioned. I don't think the other JAKs have that ability.
I mean, all the JAKs show that ability of potentially being helpful in treating cytokine storm and down regulating responses. And it probably depends on when you're using it, but it's really those two separate concepts we were talking about before. Mean, there's a concept of preventing action or preventing worsening if you infected. And then there's that concept of, well, the latter really preventing badness if you've been infected. So some of these may work in one concept, not the other, or maybe beneficial in one concept, not the other.
We just, we're going to have to sort that out with studies. And there's a number of trials as you guys know looking at the IL-six inhibitors, but there's others being banned with other anti inflammatory drugs as well.
So there are a few questions in here that I'll turn into comments. Are chronic placental patients protected? We don't know the answer to that. We're waiting for the results of the Global Rheumatology Alliance Registry to answer that question. Another doctor says, out of an abundance of precaution, we've implemented a policy of screening patients the day before they arrive for scheduled infusions.
Seems like a good idea to ask some questions about infections and symptoms. Screening them by testing would make no sense at all at this point. I wanna ask the panel a few questions about steroids. What dose of steroids would they consider their patient to be immunosuppressed? Arty?
20 and above for sure. Five and below, I don't think so. In between is the tricky part for me.
Anyone else have a bet, like who can top that?
One milligram.
One milligram.
Yeah. The thing, caveat is that all the
thin kiketic person who's on seven and a half milligrams. That's still a risk in that individual. So but that's where I already said that's the gray zone that we really don't know.
Yeah, I would weigh in that there's a gray zone. But you know, if you look at the infection data and you look at vaccine data, you don't like for vaccines, for example, you don't see a whole lot of action with prednisone of five a day in terms of minimizing vaccine responses. You start to see that action kind of 7.5 ish but above that. So I'm kind of with Arty, I'm more of a steam guy or 10 or 15 and you know once you hit that and go above I much more worried.
Doctor. I echo that 10 to 15 window, but it also depends, you know, the patient and the duration of the glucocorticoids and their comorbidities, but that
10 to Our buddy and father Lenny Calabrese makes a comment that hydroxychloroquine studied in HIV eight years ago found immune activation decreased but viral load increased. And that also another study of prophylactic hydroxychloroquine exacerbates chikungunya, begs the question about how we use this, where we use this and the timing that we use hydroxychloroquine. I already brought up that point earlier as well. Anybody have any comment about those particular studies? Kevin, are you aware of those
Yeah, I am aware of them and there's also the study already mentioned with influenza A. So obviously all viruses are different. I mean, flu A upregulates different cytokines. It behaves totally differently in some ways than this coronavirus. So it's hard to extrapolate between different viruses and these different studies, but clearly, I mean, I think the studies mentioned, I mean, the issue here that we just, we don't know if this drug works or a lot of these other drugs work until we test them.
There's a question about new patients. What are your policies for those of you run rheumatology clinics? What are your, so Kevin, take a breather on this one. What your policies on seeing new patients? Alamatsumoto, are you seeing them?
We are. I think there was some trepidation by some of us, but we are seeing patients.
Remotely or alive?
I'm sorry, so if they are truly an urgent emergent patient, we do have a skeleton staff that will see the patient. But we are seeing new patients by telemedicine as well. And we're just doing the best we can, getting as much old records as possible prior to the visit and being somewhat circumspect with patients about the fact that we sometimes can't make a definitive diagnosis at that time and that they will need follow-up with us at some point.
Anybody else want to weigh in on that? Alvin, what are you doing?
Well, the same type of thing, really on acute, like I said, the one vasculitis patient I had to come in today. Challenge in part, Jack, even if I see them today, can't get x rays, I can't get blood work, I can't get an MRI. I think Arti touched on this. Mean, else is shut down. So I'm stamping them out with a little bit of Medrol DulcePak and like the day we started some hydroxychloroquine on the patient.
But we are seeing the everybody else is just remotely and all the positive ANA's joint pain, arthralgia, rheumatoid factors, they're being seen after the summer, maybe in the early fall.
We need to see people though. I mean, there's a there, we can't punish the patients, and they need our expertise. And, and as Alan said, I think we're learning Alvin would be proud of me yesterday. I had this lady on the video pinching her skin. I was like, what the hell am I doing?
Like that, exactly. Now go down the finger and show me. We're all learning.
Very good.
That is true. So what's happening, many of you do clinical trials. What's happening to clinical trials right now? This is a disastrous kind of development. Artie, you do lots of clinical trials.
What's the story?
Oh, it's almost grown to a halt. We've done some video visits every it's way out of the window. I think there's going to have to be tremendous understanding at the agency that there's going to be nothing but violations. The trials are so strict about when you have to do certain things and yet the university is saying they're treating it. I don't want to say that they're treating as optional, but they're not treating it as urgent.
So they're really saying, your staff ought to be minimally they can work from home all they want, but they ought to minimally be there,
which means you can't really do a lot.
Yeah. Arty, the same thing. I'm involved in 13 clinical trials. My study coordinators are home. They're not even allowed to come into the clinic and everything's been put on hold.
So I'm getting all these letters and things like this, but it's just a total nightmare.
I think the companies are gonna have to renegotiate endpoints with the the regulatory agencies and maybe interim analysis that are gonna have to suffice because I mean, these are billions of dollars that are circling the drain right now.
You know, just to add to that, I was involved in a discussion today with the protocol that's being halted temporarily to new enrollment, but for the people that are in the already currently on study drug, and I encourage the sponsor to very quickly do a validation study to figure out how to validate your primary outcome measure virtually. And I think it might be possible, but I think we're gonna have to start doing these things because we're gonna run into these problems. We're not gonna be able to measure what we wanna measure in some of these patients. We're gonna have a lot of missing data. I think there's, I've echo just what Arty and Arty said, I mean, all the institutions kind of ground up halt and I think most sponsors have stopped enrollment in most trials and it's kind of moot point anyway because you couldn't get anyone to come into your clinic to enroll anyway.
Yeah,
so I think for us, because we're not associated with the university, we are trying very hard to at least maintain of the study visits. It's just really a shame if you have to stop a study medication because you just kind of totally lose all of that data. But certainly there have been no new patients that have been entered into studies.
All right, I got a few more questions that I want to end. Is anybody having a right now a hard time getting Plaquenil for their patients? If so, raise your hand. Variable.
Variable. Patients, yes, some patients, no.
So again, we're all predicting a big time shortage. It hasn't quite yet happened, but it's still worrisome that it's going to happen. Someone asked about viral loads or viral loads at all important here in following patients or managing patients, Cassie?
I know that's been looked at in, you know, a bunch of the some of the observational studies that have been done. You know, I don't I don't think we I don't know a whole lot about the the role of the viral load in management. I'd imagine it correlates with, you know, somewhat with severity of illness, but I'm not entirely sure. Kevin?
The answer is no, because first of all, it's the amount of viremia in these patients is quite low. And I mean, if you're gonna do a viral load, it's off a blood sample. I don't know how you do a viral load off a nasal swab. The more you swab, the more virus you get. I don't know.
So, you know, there really hasn't been the ability to look at antiviral loads in blood. I mean, there has been some data, like Cassie said, from China, but again, the percent of people who are viremic is actually quite low.
So in your clinics, are you having patients who come in, are you having all patients wear masks? Are you having your staff wear masks? Are you wearing masks? Let's go around the horn, Cassie.
This is probably different by institution protocol, but at the Cleveland Clinic, patients are getting screened at every door for symptoms, respiratory symptoms. And if they have them, if they have a cough, then they are wearing a mask. And employees are all being temperature screened every time they entered the building. So patients with symptoms are having masks placed. Some certainly patients who want to bring in their own masks from home and wear it in clinic, we've seen several of those.
But in general, our healthcare providers in the clinic setting are not wearing masks prophylactically unless they have respiratory symptoms.
Kevin.
Yeah, you know, about three weeks ago, myself and my staff made the decision that we were masking with every patient coming through and any patient with respiratory symptoms was also given a mask. As Cassie said, we did not have enough masks non, or asymptomatic people masks. We started doing that three weeks ago. Now that was just my clinic. Now, of course, on a chronic chest infection clinics, it's a little bit different.
Everybody's cough and we don't know who the heck has what. But our university as of three days ago went to full on mask policy for every healthcare worker, no matter where they are in any patient contact setting. So again, for patients, we don't have enough masks to give everyone masks, but we're giving masks to people who have respiratory symptoms.
Hardy. Pretty much same as Cassie. But who knows what it'll be like tomorrow.
How are you doing that in your outpatient practice?
Very similarly to Kevin. So everybody is screaming at the door. They ask the questions, have you been in contact with anybody? Have you been traveling? Do you have any symptoms?
And everybody gets their temperature down in the ear. They have to get a tag saying they have been screened before coming in, even the UPS guy before delivering something. And also we have a policy, any physician who's in contact with a patient has had the mask on in the hospital and in the clinics. But everybody's screened and all providers are wearing masks in any patient interaction.
Alan.
So unfortunately, we just do not have the masks or certainly not the PPEs that's necessary. Certainly not even for our staff and certainly not to be able to give to patients. What we had a long discussion about this morning is whether or not we would request patients to wear some sort of covering over their mouth and nose, an informal covering over their mouth and nose, and we would suggest that or even require decided to hold off on that until we see the formal CDC recommendations. But I think probably patients will probably be encouraged to wear some sort of covering over their mouth and nose when they come in to see us.
So in this era of shortage, can masks be reused? Kevin, Cassie, what are you, what's one of the rules?
I'll just tell you, it's been because for weeks we've been, get one mask a day and we're encouraged to actually use the mask every day and try to do it as long as we have a plastic bag or a paper bag with name on it you know that we're supposed to stick it in and try not to like get any contamination anywhere and then pull it out the next day and wear it. So our institute is using as of a few days ago. I mean, spent a couple of weeks helping people troubleshoot that problem. And we were looking at youth systems, we were looking at ozone systems, ways to decontaminate our mass, actually most taking them off and wiping them with the Oxivir wipes and sticking them in our bag. I mean, that's what we were doing.
But we just started using a system that is an ozonator. And I know Nebraska kind of pioneered some UV system. People are kind of doing one or the other, I think. Cassie, what are you guys doing?
Yeah, it seems when necessary that everything can be reused. Our institution just started kind of collecting PPE for being reused. And there was this company in, in Ohio, I forget their name that's come up with one of these technologies for disinfecting n95s that I think use aerosolized hydrogen peroxide that we're going to start using next week. I've heard about the UV. I was talking with one of our immunologists at our sister hospital who had some reservations about UV for like fabric mask because there might be like shadows from the creases and that that might not be the best idea but but we are going to be using these various technologies to reuse face masks and other PPE.
Yeah you know I micro did a couple of them it didn't didn't turn out so well.
I think it's like a hot on fire.
So I want to remind the panelists and audience that already covered and I published a paper a few years ago on patient self joint exams. So it must be worthwhile. Artie, are you doing the Alvin joint exam or you're having the patient do this and then this and then this and up and down and shoulders out or are you doing something different?
A little bit of both. I mean, do the prayer sign for some there's a lot of things that you can do. The patients are of course very good at telling you what joints are tender. They're not as good about swollen. And they never could distinguish necessarily bony swelling from gushy synovial swelling.
So there's just no substitute for that. I think Alvin may tell us maybe in a couple of years, they can each have their own ultrasound attached to their own iPhone. And then we could do it all remotely maybe. But yeah, it's another thing that we're learning, really dependent on the patient reported outcomes.
Are we working on the ultrasound?
Go ahead, Alvin. Say
it again?
What have you learned about the video joint exam, especially with more intense use this last week?
So yes. So now as I kind of research the world literature and like the one thing we say it's you know the inability to make a fist is a early sign of tenosynovitis. So all those things we're beginning to see. And I still look for that little question in between the MCP's. If I can't see that little groove, that's a sign.
Hey, have some puffiness there. Now the whole mechanics hand, these whole robust guys, arthritis, robustus, all that stuff is the issue. But I'm putting that together with my blood work, my x rays and all those other kind of things. So like Alan Matsumoto said, we can put enough foot in the waters and as we learn this, we're gonna, hey, tweak things. We might even do some other clinical studies to say, hey, this is what we're finding out.
But I think people really gotta dive into this instead of sitting back and just waiting to see what's gonna happen.
So there is in all the questions, and by the way, we've got over 150 questions. We're not gonna get to all of them. We're gonna end it with this last question, and we'll try to answer the other ones, maybe online in room now. But one of the overwhelming questions we keep getting is, I'm getting inundated with requests to write letters. I told you what my policy was.
And again, these are letters for your patients, families of people, but do you have a policy? Tell me what your policy is on writing letters for patients about their condition, where they should go to work. Who wants to start with
that one? Go Alan ahead, you go.
Yeah, again, as I talked about, that is a very difficult situation that we're placed in. Some cases it's clearer than others when they're on immunosuppressive medicines and they're in high risk situations. And, you know, I think I generally have a short telephone conversation with them. I express my concerns that they don't, they are not really immunosuppressed and that there's, and the lack of data that we have. But for the most part, it is extremely difficult to pass those kinds of value judgments for somebody else.
And ultimately, I think we have to respect that.
Art, do you have a different view?
No, it's individual. It depends on all those factors that I said, so many things go into it. There's no standard letter. I'm not finding everybody's a little bit different.
Definitely not a standard letter. I've written a lot of letters for stating it's medically, I feel it's medically necessary for a patient to work from home if possible. And I'm 100% supportive of that whoever can work from home should work from home. But as far as the being off work question that can be difficult in case by case basis. As was mentioned before, you know, patients perhaps, you know, that are heavily immunosuppressed or immunosuppressed and are working in nursing homes or you know, happen to have a patient who's on a biologic and was supposed to man our COVID board in the hospital, you know, certain perhaps she should work on another floor.
But everyone's different and it's tough. There is no one solution.
Kevin, last word on that.
Yeah, I don't know that I can add to what they all said. Agree, but I do think that modifying people's work who are at high risk for complications is important. And I think that's a risk for that you should explore individual patients.
I wanna thank our panelists, Alan Matsumoto, Alvin Wells, Arti Kavanaugh, Kevin Winthrop, and Cassie Calabrese for participating in this great town hall. This is gonna be the first of weekly meetings on RoomNow. We're gonna start with Tuesday night rheumatology. If you signed up for this, you can sign up for that. We're doing grand rounds every week at this time.
Little intro, half hour lecture, lot of questions. We'll get to some of your COVID questions in the future, but next week, Room Grand Rounds, Tuesday night rheumatology, the safety biologics with me lecturing unfortunately. But there'll be other great speakers. Again, thanks to everyone. Tell your friends this will be on room now and on YouTube for viewing as of tomorrow.
Good night everyone.
Thank you guys.
Good night, guys.
Thanks for
having us. Thank you. Stay safe.
Is that right, Alan?
Yep, yes, Maryland and Washington.
And then Cassie Calabrese from the Cleveland Clinic on my right. On the bottom row, have Alvin Wells from the Rheumatology and Immunotherapy Center in Wisconsin, Arti Kavanaugh from University of California, San Diego, Kevin Winthrop from Oregon Health and Science University Center in Portland, Oregon. Thank you for joining us folks.
Thank you, Jack.
All right, so I wanna with go the general format here is we're gonna talk a few topics amongst the panelists in the first half of this hour, and then we're gonna get to all your questions. So you're gonna ask questions, you can ask them using the Q and A button on Zoom. I wanna go around and start with Kevin on the bottom and ask my panelists to tell us how the pandemic has affected you. Tell me something good or bad, Kevin.
How much time do we have Jack?
I
think my complaint would be the same complaint we all have. It's completely changed our jobs. I now have a second career and I saw it in my old job. So everyone is by this, it doesn't matter what profession you're in, but that would be my gut response.
Arty. I think most things are negative and it's really shaken up our world. But, as I wrote yesterday in RoomNow, if you look there are a couple of bright things. I think people are nicer to each other. I think there's a shared communality, about dealing with with this incredibly bad event that we all have to get through.
That's brought out the best in a lot of
people. Alvin?
Tell you, I'm a little worried. I'm 59 years old. I did see one acute patient today. She had a fever and a cough. I put on my space suit and got to see her, but am I gonna get this virus?
Am I gonna be one of the ones that ends up with some crazy outcome? So that is a concern I think and all of us have and that's what our patients are relating to us as well. Alan?
So, know, I think that the, again, it's mostly bad that dealing with the near complete shuttering of our clinics and the responsibility of continuing to try to provide care for our patients, keeping our staff safe. And last, how to figure out whether or not we're going to be financially solvent in the months ahead.
Cassie at the Cleveland Clinic, what have you, what's worrying you?
Well, everything's very different, very weird. Scared that, you know, when is this going to be over? Is anything ever going to be the same again? Lots of anxiety, lots of fear, this virtual world with our patients. I've had a lot of meaningful conversations with patients about their anxiety and fears and also in home life, friends and family, I think everyone's really banding together, people checking on each other, touching base with people I might not have touched base with in a while.
I think everyone's really also taking care of each other in this bad and scary time.
So that's a really important comment. And that would be sort of my initial takeaway is that, boy, there's a lot of people looking to each of us, both on this panel and who are tuning in for answers and for some guidance. And we're not gonna have all the answers this week, but we know that we're gonna be smarter in two weeks and in two months and whatnot, but I think we need to lead or be led, during all of this. Let's start with another question, and maybe Alan Matsumoto, you could address this first. What's the most common question you're getting and how are you responding to it?
I think the biggest question is, what do I doc, what do I do about my medications for rheumatoid arthritis? Do I stop methotrexate? Do I stop my biologics? And I think for the most part, I'm encouraging them to continue because of the concern of what a flare would mean in my patients.
Cassie, what's the most common thing you're hearing?
After that question, even something as simple as should I come in for my visit? It's a question we get every day, should I come in? Do we do a virtual? I think everyone across the board is probably doing the same thing, encouraging everyone to stay out of the clinic unless they need an infusion, which I still think is important for patients to keep their scheduled infusions to prevent disease flares and risk for, you know, need for prednisone and more exposure to the healthcare system. And we're learning that a lot of things can be done over the phone or over a face to face visit.
Alvin. I'll echo both of those responses. One of the other ones that I'm seeing all the time say, hey, Doctor. Wells, I was on Plaquenil several years ago. I stopped it because it wasn't working.
I have a side effect. Do I need to go back on that now? So we're getting that all the time. And for the ones who are on it, am I gonna be getting my prescription filled?
Yeah, all of a sudden the COVID crisis has turned the non compliant black widow patient into someone who's incredibly compliant overnight.
Exactly. Yeah,
Artie. The same, same thing, but I would, I'd say a variant of that. Am I immunosuppressed? And that's a deep question. As scleroderma patient who is on no immune modulators, but is she immunosuppressed?
She said, should I be working in the hospital as a nurse as she was? What about someone who is on a therapy but has no systemic inflammation whatsoever? Are they better off? Are they less immune suppressed if they have absolutely no inflammation and the disease under perfect control? Or if they had stopped the therapy and then they're inflamed?
I think that's going to get to the discussion of what do we do when we're thinking about treating patients who already have COVID and have the cytokine storm, for example. But I'm getting that from all the patients. Am I immunosuppressed? And it's not always clear.
Kevin, are you hearing anything different?
Yeah, I hear all those questions. They're all good questions. I think I'm being asked a lot of questions by not just patients, but all those old friends that Cassie mentioned coming out of the woodwork from college and everywhere else saying, two things. When do we know we flatten the curve or when are we gonna flatten it and when we can go back to normal? I mean, are the things I'm being asked daily by people in our profession and outside our profession.
Of course, I don't know the answer to those things, I think my gut is that we're not gonna go to normal things are gonna be changed. Not all in a bad way. Some of these things will be good for the future, but we're not gonna go back to normal. We're gonna have this social distancing in place for months. I mean, is not a two weeks, but this is probably three or four month deal.
And then it may happen again later in the year. I think people just need to be prepared that we need to specialize differently and kind of change our practices.
So I want to tell the audience that both Kevin and Cassie are infectious disease specialists. Cassie is a rheumatologist and has done an ID fellowship. Kevin is an ID consultant who's worked with the CDC who seems to do a lot of rheumatology work. Thank God for all of us that we have Kevin as a friend. And so that's one of their main help in being a part of this program.
I want our panel to address the issue of what adjustments you've made in your practice and how practice has changed. I assume everyone is doing remote visits, but what are the major adjustments or important adjustments that you've made in your practice? Let's start with Alvin.
Yeah, I mean, has been a dramatic change. So this is Thursday. By this time, I would have seen 75 or 80 patients. I've only seen two patients actually in the clinic, a uveitis patient on Monday and a vasculitis patient today. That's the one I mentioned that had a fever.
We've gone to telephone calls. We've run-in, not all of our patients have internet access, so telephone is going to be important. And then doing virtual visits. In the past, I would do about two or three virtual visits a day. Today I had 10.
So we're doing those now and just kind of wrapped it up. But also on the staffing side, you know, some of my staff has been furloughed, one of them is now being quarantined because of a cough, she hasn't been screened yet, but all those different things. Then everybody's all anxious, you know, are they gonna get paid? If they get sick, is it workers' comp? And all these different things.
So on the staffing side, but also how we day to day visits with outpatients, virtually telephone calls, and only in couple of few cases where we really need to be seen, I need to lay hands on them to get them treated. Like the uveitis guy, he got a couple injections before he left the clinic because of the flare.
Marty, what adjustments are you making?
Well, I mean, going to the video visits and the telephones, and sometimes they work, which surprised me. Sometimes they're just not the same. You just cannot get the information you need from a virtual visit. You really need a visit. The other thing that I've started to notice more is as Kevin said, were thinking, okay, a few weeks we'll be back to normal.
So that's when that patient can get a chest CT and then the other patient can get an MRI and my other patient can get the other aspects of their normal medical care. Everything's been sort of postponed, but you can't postpone everything forever. So I want everything to be back to normal. I just don't know when it's gonna be.
Kevin. Yeah,
I agree with Arti totally. And it's funny, Alvin, the only patient I saw today was uveitis patient's TB. I mean, there's certain things that you just gotta see, can't look in the eye virtually. I think some of these visits, I mean, in my D clinic, we've gone totally virtual except for cases like that. And I think that in some parts, this is gonna be good to change practice.
We're gonna do more things virtually in the future. But I also, I don't want patients to think that a virtual visit is a visit in person because it just isn't. It's not quite as good and I think to stress that.
Cassie?
Yeah, I echo all those things, going virtual as much as possible while still really trying to do right by patients that still need our medical attention. I see a lot of cancer patients who are receiving immunotherapy and develop these immune related adverse events and you know, patients are still getting cancer and receiving those treatments and they're coming into our cancer center and trying to decide who actually needs to walk over from the cancer center on the day they, you know, were scheduled to come in and and see me versus doing it virtually is sometimes a tough decision to make or also those patients that we've been waiting a while for their musculoskeletal ultrasound that was scheduled for tomorrow. Do you still want me to go get that or can we postpone that? So sometimes tough to decide what to postpone and what to do virtually. And also being at an academic center, hard to think of sometimes, but trying to keep education alive for our fellows who had their journal clubs and things scheduled and doing those virtually every morning has been something interesting that seems to be working so far.
Doctor. Matsumoto.
I think my staff has worked very, very hard at trying to maintain the social distancing of our patients. So patients who come in for laboratory tests, come in on a schedule now. They're often asked to wait, in their cars before, coming into the office. Our infusion suite has spaced out all the chairs as best as possible to make sure that there's appropriate distance. And all patients get calls the night before to ask about symptoms, to make sure they're not symptomatic.
And again, are asked before they walk into our offices in the patients that we do see. It really has been an incredible effort on my staff, by my staff to do that.
Alvin. Yeah, Alan, you brought up something to make me think of a quick comment. I heard one of my colleagues say instead of doing the infusion suite now, so now they use in exam rooms as an infusion area. The patients are actually isolated. You don't have all the patients coming in.
Our colleagues on the line, you can have individual patients in the exam rooms to get their treatment as well. So that's one way we kind of do isolating.
That's good idea.
I think we're all practicing differently and there's a lot of things we're not doing. We're not doing injections. We're not doing things we would otherwise deem as elective. We're holding off on sending patients for, imaging unless it's absolutely necessary. I mean, all of our imaging departments have given us directives about that.
Anybody else have, the I'm not doing any more story? Okay. Well then, let's move on to, what I think is a, I want each of you to ask a question of your fellow panelists. And it could be someone, a directed question, or it could be just a general, question to the group. Artie?
So I'm gonna hit Kevin up before everybody else does because I think everybody's been asking this. So Plaquenil is the, of course, it's the hottest thing. It works in vitro. But I was reading something that said, well, it's the sham wow of medications. It cures Marburg.
It cures influenza A. It cures COVID. Yet, they've only tested it in influenza, I think, and it didn't work, even though in vitro it should. So is this all jazz hands that we're seeing based on a report that was just minimally that had so many, issues with the study design interpretation? I if it wasn't in an emergency situation, you would totally blow it off and say that small report should never have been published.
Yeah, you're talking about the French report?
Yeah.
So I totally agree. I mean, some data there that has made optimism, but there was enough problems with the study as you just mentioned that it's really hard to conclude anything. And there's been negative reports from a small study in China and another study in China that maybe show some benefit. Mean, none of these are the kinds of steps that you or anyone on this panel would, you know, would stand up and say, hey, I just did this study my results. I mean, So it's, I think it's really hard to know.
And I write a lot of compounds in the beach that either theoretically should be antiviral or actually have been destined to be antiviral in vitro yet when they've got humans they have an effect efficacy. So, I think the jury's out just like you said, I have a lot of concerns about people using it such that people who are others are getting it or all your patients. And so I definitely support the trials looking at it and I think we should look at it. This combination with azithromycin. It's interesting like I have tons of patients on azithromycin for infectious diseases and yeah, I've always people getting refills this week who can't get them.
This type of usage without, you know, a lot of data behind it can create some bumps.
So the, I don't think anybody has a problem with someone who's actually infected and sick and in the ICU getting hydroxychloroquine. I think the issue is giving it to people who you think might could have it or don't have it or prophylaxis. That's obviously a problem because we're Let gonna run out of this in me ask Cassie, do you wanna comment on azithromycin? And it seems to be getting more play. And interestingly, out there are comments like, well, given the danger of hydroxychloroquine, what?
You know, obviously people have never used it, right? But there are a lot of people who are quickly going to the drug they know, which is azithromycin. So what's your take on them?
Yeah, you know, it's a good question. And there's so many, you know, unanswered issues about this and the hype about the azithromycin plaquenil combination is from that Marseille study as well. You know, I'm not as excited about azithromycin in the absence of, you know, a secondary pneumonia. And a lot of the patients that we have admitted to the Cleveland Clinic are getting treated for pneumonia and end up being on azithromycin or doxycycline or others. But mechanistically, I think we need more information to just slap everyone with azithromycin and Plaquenil at this time.
Cathy, do have a question for anyone?
Yes, I do. I want to ask also Kevin a question. What do you think about this universal masks, this idea? Do you think it was a good idea, bad idea?
Idea here, Kevin, is it a policy of universal masking? And does that relate to health care workers or even patients? Go ahead Kevin.
Yeah, I mean, we should get my wife to come back to us here and you could ask her because four weeks ago I said, why aren't we all wearing masks? And then I know why we're not all wearing masks because we don't have enough masks. And that is the reason why that recognition wasn't made, you know, four or five weeks ago and that's it's a huge problem. I mean, the lack of lack a mass and the ability, the inability to produce them when we need them, it's all been a problem. So that's been the reason why that recognition has not been given.
I mean, look at the data from all these other countries which trying to do, Singapore looked like they did a good job and China, you know, we're trying to extrapolate from these other experiences to our country, which I think is hard to do. It's like RCT data from Japan versus RT data in Kansas, you know, totally different experiences. One thing that allows Asian countries is mask use. I mean, pretty much universally, all those people wearing masks, it makes sense to wear a mask to me mainly and primarily because people who are infected either static or asymptomatic probably are going less efficient spreaders. And that was, know, four or five years ago why I told my wife, I think we should be wearing masks because we don't really know who's infected and who's not.
And I think it would be beneficial. But again, that recommendation wasn't made due to the fact that we didn't have enough masks. So now here we are, we still have enough masks. Now we have recommendation. I think it's, I consider now that we don't all need N95s on in the community, which was not clear four to six weeks ago or less clear.
I think people buy surgical masks or probably protect masks know, out in the community, might, all by, you know, diminishing spread of virus. So that's kind of my thoughts on it.
So, I wrote about this today in RheumNow about the universal mask issue. A key issue is that if it's being used outside the hospital, just don't use N95 masks. We need those for healthcare workers, but there may be merits to it. Alan, do you have a question for anyone?
Yeah, I'd actually like to ask, maybe both of our ID specialists, and this is about a case that came up, recently in our office. A patient called with, symptoms that were very suggestive of having a COVID-nineteen infection, And she was not tested because of the lack of ability of testing. And the symptoms have resolved. At what point do you feel comfortable bringing that patient back into office for her Remicade infusion, both for the safety of our staff and also the safety of her getting a Remicade infusion?
That's a really great question and actually one that was discussed in our department yesterday. And I think we might in some way extrapolate from when we say it's okay for an employee to come back to work like an health care employee, which would be, you know, three days of no fever without fever reducing agent, seventy two hours, improving symptoms, you know, fourteen days from start of symptoms and if still symptomatic beyond that point to wear a surgical mask, you know, if they absolutely have to come in for their infusion. And for healthcare workers, they'll get two nasopharyngeal swabs negative 24 apart, apart, which I don't think probably is gonna be practical for patients, but just going by the the defervescence criteria and the time from onset of symptoms and then still wearing symptomatic, even though they've improved as probably
So a quick follow-up to that is that all this evidence that you continue to have documented virus fourteen days, I've even seen thirty two days after the infection. Does the three day timeframe bother you a little bit?
The well, it's the three days with no fever plus the the I think for our healthcare workers at seven days and improving symptoms. But I have seen that data about persistent, you know, positive virus for many days out, whether that's, you know, viable virus or people can still get infected at point we just don't know but a very good question and I don't think there's probably a right answer right now.
Yeah there's no right answer. Mean the only thing I can ask you and I think some of those recommendations as you mentioned in some of that is geared towards or it's Look, we're going to have a healthcare shortage right and we're willing to probably let healthcare workers get back to work slightly earlier than we are maybe someone who to get their Remicade infusion so more conservative than that. I mean, we just built through a trial today in terms of when to let them back in a study to get a fusion. I mean, I would say and I, again, I'm with Cassie, I don't know that there's right in, but if you look at the shedding, yes, it is pretty long. There is data that shows that the virus is liable in culture after seven days.
So even people who are shedding two weeks after, they're probably less likely to be transmitted or to be actually at risk getting sick from any remaining virus. So my recommendation at this point is to get some moving target change next week, it's resolution of symptoms and then seven days seven days post resolution of symptoms. I think that would be consistent with with the viral culture and data and you know kind of CDC has been reckoning. You know people in general, that's the seven day period after resolution systems is maybe an important period where people can still be transmitting.
So, Alvin, do you have question for the group?
Yeah, two quick questions. Already first to you. So I had a resident who was gonna start April 1 and we just called and said there's no patients and I need to do the phone call. So we sent him home and it really was nothing to do. So he's doing some stuff inside the hospital.
And then Cassie, a quick question for you. So this week the FDA approved a fifteen minute test from Abbott. I knew about the real time PCR, but how, what's a fifteen minute test? I'm trying to figure out how it works and maybe you can help me out with that. But Artie, your answer first.
So yeah, the training and Cassie touched on this, that's a big deal, for the students, our students too. They're just been told to stay away and there's so there's gonna be a gap We're a little bit more worried for the fellows Are you know they are they gonna finish their fellowship those who are supposed to finish in June is the ACGME going to say, hey, you know what? You haven't been in enough clinics lately, and you didn't do enough of the additional projects that you were meant to do through no fault of their own. So I think this is going to hit fellows a lot more than the residents because they're too, they're coming to the end of their year. Will they end up with any so called deficiencies in the things that they needed to do to graduate?
Cassie?
And about that real time PCR test, I think you're referring to the RT PCR that's going to be, I heard rolled out at the clinic next week, that is being referred to as real time but it's my understanding that this still has to go to the lab and be processed and can be run very quickly but we won't be getting results for three to four hours. Five days. Transport time. Yeah. Five days, three to five days.
But what's being called real time is something that's actually gonna take a bit more of time because it still is not happening at real time at the bedside, but it's going to the lab and then being resulted.
Okay. Folks, want to I I think many of you know about the Global Rheumatology Alliance and the registry. It's been established in lightning quick time led by Philip Robinson from University of Queensland and Doctor. Yazdani from UCSF. This thing is up and running where you, the rheumatologists are enrolling patients of yours who have been infected or suspected to be infected right now.
Only operational for a few days, they've got one hundred and ten patients enrolled. Is seventy eight percent female, eighteen percent over the 65, thirty six percent rheumatoid, seventeen percent both with lupus or with psoriatic arthritis. Over seventy five percent of patients that were enrolled were in remission at the time of being enrolled. Thirty five percent have been hospitalized. There've been five percent deaths in this group.
So it's quite sobering. I think it gets to one of the biggest issues that we're all dealing with. Are our patients really at risk? If our patients were at risk, like everyone has said, the immunosuppressed, those on immunosuppressants, would we see a lot more hospitalizations and problems amongst our patients? I would like to go around the horn and get everybody's quick thirty second impression.
Kevin, what do you think?
Well, first of all, this effort's unbelievably important and I'm so glad they're doing it and they're gonna generate a great data very quickly. I am struck by the paucity, emailing colleagues around the world and in some case finding on the ID side similarly, but I am struck by the paucity of reports on biologic name it, all your drugs, the policy of reports types of individuals in the hospital, as compared to similarly aged comorbid people in the hospital who don't have those drugs. So I don't, I expect some of these drugs may be a risk and some might not be and might be protective. Of course, we're gonna figure this out in the next month or two, but I'm struck by the lack of those folks. And I already asked a question or maybe you did, you know, how many are these individuals?
My read is your patient population, their greatest risk factors right now are their age and their comorbidities, their cardiovascular disease and their smoking and their lung disease. Those are probably what's driving the hospitalization of those individuals.
So I wanna throw out the numbers I meant to add here before this question, which is recent reports show that if you're 55 to 64, there's a one point four percent fatality rate with infection. If you're over age 65, and this is all patients, not our patients, if you're over age 65, it goes up to two point seven, almost doubles. If you look at those who have these other comorbidities, a heart disease, chronic lung disease, and diabetes, there seems to be about a threefold increase in really bad things that happen. Those who hospitalized in the ICU, it's two percent if you don't have those things, it's seven percent if you do have those comorbidities. And there's similar kinds of numbers, but it's very clear for diabetes, heart disease, and lung disease.
But I'm questioning, is it so clear for our rheumatic disease patients? Arty?
Yeah, I think that what that highlights nicely, Jack, is the heterogeneity of our patients. And I think we have to do it case by case. We can't even lump a disease and you have different diseases, different levels of activity, different treatments. We always forget to mention prednisone which is you know that that's the bugaboo that I bet at the end of all this is gonna show up as something bad. So our patients are so different one to the other.
I think we really have to individualize the approach as best we can. Alvin?
So yeah, I mean based on my opinion, we've got a lot of patients. I mean in my database over 13,000 patients, a lot of them as you know, I'm very aggressive with these drugs I'm just not getting the calls. I'm underwhelmed. In analogy, I tell my patients that when the immune system is preoccupied causing the inflammation, causing your psoriasis, your arthritis, your lupus, that's the time a viral cell or bacterial cell can wreak havoc. So we tell a lupus patient, You get a fever, I'm treating for infection, but I'm also treating your disease.
And that's the kind of the caveat that we see. So right now, we're just not getting it. What we've done, we've to do an Epic. We have already set it aside. We can actually go through and screen people on my hit list of my top 10 drugs that we think might be a risk.
And right now we're just not seeing anything coming through from the emergency rooms or urgent care.
Alan, you have a very large group in the DC area. What are you seeing?
Yeah, so, unfortunately, just to, I had to put one of my patients on that registry yesterday. And just to give a shout out to the registry, it was extremely easy to use and really well thought out. But I literally have the only case among my 20 partners who has a documented case. So that's the anecdotal evidence. We're Maryland and not New York City or California.
So I think only we'll know in time. But I do want to pose another question about whether or not our drugs increase your risk of getting the infection. But once you get the infection, do they change the course of the infection? Are they less likely, for instance, to be on a ventilator or have a disastrous consequence? I wonder whether or not people would weigh in on that one.
Yeah, it seems like this is where the registry is going to come in really helpful in telling us us the answer. Don't know that anybody's got enough experience to answer that. Cassie, what's your opinion about this question?
It's a important and great question. And you know, we think our patients are immunosuppressed, they must be at increased risk for getting this infection. But I don't actually think that we have any, you know, data to suggest that right now. And like Artie said, it's probably more of a individualized, you know, rabbit risk calculator type thing. What else is going on in our patients?
Are they on steroids? Do they have chronic lung disease? You know, have they had other serious infectious complications? And, you know, we have a bunch of cases at the Cleveland Clinic so far, two cases to contribute to the Global Rheum Alliance. And we really look forward to the rest of the results from that and what we might learn.
But I've been I was interested to see the results from the registry today about the patients who are on Plaquenil who have developed COVID-nineteen. It didn't seem that they you know did better or worse than anybody else. And today, interestingly, one of our ID pharmacists brought up an anecdotal observation that patients with HIV who are getting COVID-nineteen seem to do okay. Whether that's because of their immune status or because of the medications they're getting, it's like very few numbers, who knows, but lots to think about.
Yes, fascinating. So let's go to the questions from our audience. Eugene Fung in Waco asked the question, is there an issue of the timing of hydroxychloroquine use? Is it more like, and how long should it be used for? So it's, you know, our patients are on all the time, but if someone goes on hydroxychloroquine, what's the course of therapy and should it be given at a certain time?
Anybody want to jump on that?
Yeah, I'm
wait, Cassie, if we tell our patient takes a long time to work for our diseases, but what's the data? How quickly does it work and prevent this exaltosis of the viral? Is it takes months and months or will it work quickly?
We don't even know if it works. I Yeah,
I think we, you know, are really anxiously await clinical trials that are gonna look at this. You know, it seems I'm all for, you know, sick patients in the hospital getting Plaquenil. It's a low risk drug. You know, we and our center are giving five days of Plaquenil to patients that are admitted with COVID-nineteen and they're getting eight hundred milligrams on day one and four hundred milligrams for the rest of the four days. But you know, whether that's the right dose, or the right timing to give it, we just you know, to stay tuned.
So we have a question, from Queensland and that is that they, have a lot of talk around patients who are on biologics or therapy or are targeted synthetic, DMARDs or combination DMARDs are at risk and therefore should not go to work. Arty, what are you telling your patients who are on these therapies? Should they get a pass and not go to work?
Well, think with the social distancing, we really are trying to keep the exposures down to try to prevent that one person who could be infected from spreading it. And I saw this analysis today. It was very nice about the risk of spreading and the number of people you encounter. And it's all about the number of people you encounter. But again, I think it's sort of individual.
If the person was working and there's one other person in the office, that's just as good as being at home. If working in a crowded place where they're gonna have to be in close contact with people, I think I would say that they maybe should get a pass.
Okay. One of the questions that came up, Kevin, you wanna say something on that?
I was just gonna add, I've been writing a lot of those letters for patients, they're healthcare workers and they have high conditions and they're a nurse and they're worried about working. I wrote one for someone who's a nurse at nursing home the other day, they're 70 years old, they have chronic lung disease, diabetes, maybe plus or minus, they probably should not be in clinical situations where they might encounter COVID. So I think it's try to redirect those high risk patients to other jobs or home in that space for a while.
Anybody else want to address that?
Yeah, can I chime in? I've had a patient got mad at me because I refused to do the letter. She had to go to work. It was one of the situations where she couldn't, you know, stay at home and she was on one of my drugs and she just wrote back through me in Epic saying, Hey, if I get sick, it's your fault. And then, so she really got mad at me, but she had no risk factors, asymptomatic, but a boss was requiring, she came to work and wanted me to get her off.
I didn't, they couldn't justify that, but she really got angry.
You know, about eleven days ago, maybe a little bit longer than that, I got the same kind of request. The patient called, said because of this, the patient heard there's gonna be a shortage of all drugs because they're all made in China. Can I give her a ninety day supply of all of her medicines? And I came back and said, no, that's goofy. We're not gonna do that and whatnot.
And I had a revelation actually about five days later and I was wrong. I think I should have actually spoken to the patient. And I think on one hand, we need to tell our patients whether we think each individual is at risk or not, and they're not necessarily at risk because of these diagnoses or because of these therapies. It's steroids and how old they are and how sick they are. Those are the things that really got a way into this.
But I like the Bush administration came up with guidelines for dealing with disasters. And there are some tenets of that guideline, started with, you know, being right and being credible. Second was showing respect. Third was patient safety first. And lastly, promote action.
So with my patient, I think I should have given them a ninety days prescription and explained to them, I don't think this is gonna be a problem, but let's go ahead and do that, because you wanna be in a partnership here. You wanna support people who are really very freaked out about this whole thing and what they're gonna do about it. So I think sort of siding with the patient as much as we can is gonna be important. Of course, patients who are gonna stay home, they might lose their job. And I mean, it adds to the whole financialness that we're dealing with.
Al, are you seeing much of this in your practice?
Yeah, I get these letters every day and I am torn. And I think it's very similar to a patient's asking for disability. And I think we're torn because we're torn between, in some cases, healthcare workers that are needed and being supportive of our patients. So, it does put us in a very difficult position.
It really does. Okay, so, how are people handling, we talked about infusions earlier, spacing people out as, Doctor. Matsumoto said, Alvin Wells talking about using exam rooms as infusion places. Eric Ritteman had a great blog and video on this. What are we not doing?
Are we doing Prolia injections? And other easy infusions?
That's where the duration gets. Sorry, Alan, go ahead.
So things that I think can put off just because of logistical issues such as reclassed and such are being put off. The Prolia injections that used to be given by our nurses are now moved down actually to the doctors, the one doctor that's in the office. So they've been given by doctors in private rooms. So some of that is continuing. You know, I think initially when this problem broke, we thought about perhaps just prolonging the infusions.
But now that this has gone on and there's really no end in sight, I think it's really hard to say, look, just keep on putting off that infusion for rheumatoid arthritis. So I think, and when patients are given the choice, I think many of them are choosing to come in. I think our infusion schedule is actually fairly busy. Marty? Marty?
Yeah, I think exactly that you brought a Prolia and said, well, you could put that off. You don't want to put that off for six months. Absolutely not, because then you start to lose the benefit of it. So when it was a couple of weeks and he said, oh, let's get your power through this month. But now as it gets longer, how many of our medicines are not important?
I don't know that any of our men are we using unimportant medicines? No. I think we all use medicines all the time that really do have a role.
I don't think we have a
lot of unnecessary medicines. So it's really, it's a tough decision to skip them.
So another really tough issue we're dealing with, is now we're getting notices from our infusion centers and pharmacies that, sorry, Charlie or Charlene, you're not getting your Actemra infusion. That's all on hold. We're saving it for all the might could benefit in people hospitalized with COVID or cytokine storm syndrome. And so it's now gonna be unavailable to a lot of our patients. How are we gonna handle this?
And what's your, do you have a plan for your patients? Cassie, have you dealt with this yet?
Yeah, we have been giving tocilizumab to our sick COVID nineteen positive patients in the hospital and we have set aside a supply for these patients and future patients and kept what is anticipated to be needed for the, you know, CAR T cell patients and then our patients who are already on it. Having said that, our inpatient supply for the COVID-nineteen patients is dwindling very quickly. In our department, are new starts to Tuslimab has been restricted to subcutaneous for now. And I don't actually know if that will parlay, if the need for IV tocilizumab is going to parlay into a shortage of subcutaneous tocilizumab, I'm not entirely sure. And then also other IL-six inhibitors, sorrelimab, but we are definitely running into issues with the need for tocilizumab, both for our patients and for these COVID-nineteen patients which I'm sure we'll talk about.
Where's cirucumab when you need it?
Well, can easily move people over from the subQ to the subQ form of this, but the problem is a lot of those patients who are getting these infusions are Medicare and there aren't many options for them. So, Alvin, did you want to address that?
Was a quick question I wanted to say. So we did a call last week with Novartis about the issue, and one of the things they're doing as a company, they're donating 1,300,000 doses of tocilizumab around the world for treating these COVID patients, and they say they have enough drug in stock to cover the demand for two years. The drug is made in France and Switzerland, so they're not concerned about the supply. The thing we see in our area now, the IV patients now are going to home infusions. And Jack, you and I had a conversation with one of the companies last week about, hey, will there be a change such that Medicare say, if you have an IV to sub q option, Medicare will need to cover both options.
Patients should not have to go to the hospital when you got other options. And I think that's one thing we're gonna see change coming out of this crisis.
Alvin, you said that the drug was donated by Novartis. I think you meant Genentech?
I just said yes, yes. Yes, Genentech, yeah, Farley.
So Doctor. Scopolita sends in a good question about a lupus patient. And you know, the question is, what do you do with your patients that need to go on new therapies and whatnot? There seems to be a prevailing view by some rheumatologists that let's just not start any new hydroxychloroquine. Let's not start any new immunosuppressants right now.
Is that a good idea or a bad idea?
Well, I think you got it. We just had a patient admitted and it was severe lupus, just relatively new. Wanted to give her rituximab, super bad arthritis and cytopenias. And the hospitalist said, well, we have to have a negative COVID. And you can't argue.
But I said, no, we're absolutely going to treat her. I mean, her lupus is going to ruin her while we're protecting her from us treating her. And so we jumped in and got her the treatment. But I had to bring those other doctors along. Anyone else dealt with this?
Yeah, I've had a lot of patients ask when we're having a discussion about escalating treatment or starting treatment if now is maybe not a good time to do that. And I've really been trying to avoid making decisions about treatment based on the what ifs, you know, not preemptively stopping therapy and not deciding not to start a therapy because of COVID-nineteen. Certainly if someone is gets sick or symptoms, that's a different story. But I've been trying to not let that guide treatment decisions for patients that need either new therapies or change in therapy for active disease.
One of
the things
we've done
Go ahead.
The small specialty pharmacies, they actually have it in supply. So I've actually found out from them that why don't we call, they have two hundred doses of hydroxychloroquine in stock. So if you don't have it at Walgreens or CVS traditional ones, the local specialty pharmacies are ones you can reach out where they have some may probably stop.
So I made a difficult decision recently about putting somebody on rituximab for GPA. And it is absolutely a gut wrenching decision, but I think in her particular case, the clinical aspects of that disease. And the other thing that I fear is that if any of these patients become sick enough that they need hospitalization, they may not be able to have an available hospital bed. And that's frightening.
Yeah, that issue and the other issues what I already mentioned. I mean, what are the alternatives? And if it's high dose steroids or big steroid tapers, I'm not excited about that.
So a patient has gone through a Corona infection and would you start them on a biologic after they supposedly have resolved their infection?
Seven days after they finished Seven days after stopping having symptoms.
So it's no longer the scarlet letter, it's actually treat them as you would normally treat them. Is anybody worried about the cardio toxicity of hydroxychloroquine or chloroquine? It seems to be very overstated in the literature. Marty, what do you think?
It's interesting because this has come up twice in the past, just before COVID, it came up. We had a couple of people in house with cardiomyopathy and they both happened to have been on hydroxychloroquine. And they had 12 other reasons for cardiomyopathy. But you can't say that there's no risk. There's some really old literature where back remember when articles used to be full of histology, with arrows pointing at who knows what and, but there's no way to prove it, so in both cases we end up saying we have really don't think that this is contributing at all but, in the bigger picture of things their diseases were mostly years back.
They're in rheumatic disease. So we ended up stopping it. So now, yeah, when you read stuff, hydroxychloroquine has a whole laundry list of urban legends of things that I don't ever know that it ever caused cardiomyopathy, the anemia, I, you know, the flare of psoriasis in PSA patients. I think there's a lot of things that, you know, people talk about I don't, I've never seen.
Let me ask our panelists. Let's say you're sick. You've got a fever 101, you got a cough. Are you starting yourself on hydroxychloroquine? Alan Matsumoto.
You want heart failure? What are you crazy?
So that's a no Alvin.
Absolutely yes. I have some hydroxychloroquine and I have azithromycin. I've got a family to take care of. I've got patients to take care of in a busy practice. So absolutely.
Al, are you?
Yeah, I think it's not unreasonable even though I just trashed the data. I don't know that I believe it, but I also just said, I drive Scloroquine so safe.
Kevin.
I'm just loaded up on NSAIDs, Jack.
Totally dispelling the whole French government's position.
I'm on losartan for my hypertension and perhaps it's protective. In fact, there's an RCT looking at losartan. Who knows? Mean, so many of these ideas and obviously when you're sick, the downside of many of these ideas is very small. And I think it's not unreasonable to try many of these things, so.
Cassie, what would you do?
Oh, take the Plaquenil. Give me the Plaquenil.
Should rheumatologists be doing inpatient consults?
I'm starting on Monday, so I guess I should be.
Hardy, you're on ward service. Are I you
think we have to. I think you could do as much as you looking at the chart, by looking at all the data that you have available to you so easily, but I think we have to.
All right, if we had universal testing, would you test all your patients and would it change your therapy? Alvin.
Jack, I think I would because just like I'm screening for the varicella titers, I'm looking at their QuantiFERON, I'm doing whatever I can to make sure that risk factor for getting these diseases is gonna be low. So like we say, we don't have the data yet to say if I put them on drug A, B, or C, is it gonna increase that risk? But these patients at some point will be immunosuppressed, they will get respiratory tract infections. And if I can eliminate one other thing and maybe mitigate that, the only caveat now is I don't have a treatment. I don't have a vaccine yet.
So but I think down the road, we will be shooting everybody with the vaccine once we get one developed.
So let me take a different view and say that I don't really want more information because more information tends to get me more in trouble over time. I would probably go along with the view that maybe we should wait until there's a reason to do the test before I would do the test. I that think is the current policy out there, but testing's gonna become a bigger and bigger issue. Anybody else wanna weigh in on this?
Well, think, and I'm not gonna, I mean, I hate to do this with Cassie and Kevin, but I'm gonna bet that when we get, data to show who's been exposed, that it's gonna be like eighty percent of the world. I think all of us have been exposed. So as you said, Jack, you get the test, what are you gonna do with the results? If you had somebody who never had a fever, never had a cough and their IgG COVID is positive, their IgM is negative, what do you do? I don't think you're gonna treat them differently, but I'd love to see that data.
Same.
Yeah.
Yeah, I'd just weigh in that, you know, a serologic, as already just mentioned, is not commercially available that I'm sure there'll be some pretty soon. There will be serologic surveys done, of course, to try to come up with an already just guessed at, you know, what was the prevalence of this infection when all said and done, but You know, I don't, and I think, look, if one if we had tons of tests and ordering tests and a problem and you could get reliable results back very quickly. Only having Certainly doctors need the ability to test people who are symptomatic, where the differential diagnosis is COVID. And I mean, that thing is acting, that's something now that we're all starting to get. And I think it's important to screening asymptomatic people is very different.
And the benefit risk of that is, you know, and everything tied to that really depends on the setting. I guess you can make an argument that Alvin was making that someone that you're about to be depressed, you do test them, even asymptomatic, so they don't have it. But we're kind of a long way off from that, I think, at this point, because we're testing people who are symptomatic. We'll have to see where it goes and I can see that maybe particularly as this on and on and the outbreak lasts for a long time that eventually you're getting your patients to this just like you do things.
Cassie, you want weigh in on that?
Yeah, I completely echo all of that. I think there are so many people probably walking around with COVID-nineteen with very mild symptoms or some people perhaps without any symptoms that we just don't know about and that regardless of separate from making rheumatic treatment decisions, we will not fully understand the scope of this virus until we understand how many people have it. So we need to test more people when we're able.
So as we switched over to this remote care sort of model that we're in right now, many people have struggled with how to do that. So we did a number of videos with Alvin. Alvin, I think has done four, well he did talk at RheumNow Live, he did three videos after that. I still get people asking me, we need more information on telemedicine. There's a question out there, how comfortable are you with doing a telemedicine or a telephone visit?
I wanna preface that by saying, I've always said that telephone medicine is risky medicine, it's dangerous. You really need to see the patient to know what to do. But now we're in an era where we're living in danger. So Alvin, how can you allay my fears of making mistakes by doing it all over the phone or by video?
Let me first start with the consult, because we work aggressively with that team now. So if a hospitalist calls me, already like you say, saw a patient today with cytopenia and all the other features, the goal would be to have the hospitalist on the line, they're in the room with the patient, I have the patient there and they get me. I'll walk them through the physical exam and it's okay, I'm gonna put a couple orders in on the Epic and based on that, I'll tell you whether we're gonna go steroids or rituximab. And then that patient, because I don't really need to go to the hospital to see them, expose myself and the rest of my patient with these diseases. The one thing I'm finding, Jack, is that we gotta get buy in from the patients.
Just like some of my older patients don't like to see the nurse practitioner or PA, they still wanna see me. I had one guy call today, he said he doesn't wanna call from the nurse or the medical assistant, he only wants to talk to on the phone. So once we have buy in from our patient, I think this is one of the changes we're gonna see moving forward that a healthcare system will change. We all, I think, like we said, the old days when you were screening patients, okay, based on these charts, I don't wanna see them in a clinic, you don't get reimbursed from that. Take fifteen minutes, evaluate that patient.
Hey, that back pain and a positive ANA of one to 40, that's not lupus. You don't need to see me. And by the way, I can send off a bill for that. So those simple things you can do. And the telephone calls I've done this week and last week is that the Medicare patients, hey, I just wanted to check-in.
I want some reassurance, etcetera, etcetera. Do I need to get my labs? Now the methotrexate labs, we're forgetting about those. We're just following patients the longest we go through. So I think one change we will see is that we will feel comfortable.
We gotta get buy in from other doctors. There's some articles out there, the primary care and the hospital is a concern that's gonna put more pressure on them to do the things that they do. But I think we'll see some change and we're trying to work very aggressive with that group to kind of start that mainly with consults.
Anyone else have experience that they can impart upon the audience with telemedicine?
I think, Jack, certainly physicians of our generation feel very uncomfortable not being able to do a physical examination because it goes against everything we were taught, everything our mentors taught about the proper evaluation of a patient. But as I do more of this, I think it is a skill set. And like any skill set, the more you do, the better you're gonna be. And I think we have to accept that reality.
Agreed, that's really important. I'm glad Kevin's able to tune back in because we're getting a lot of questions from the audience. Maybe Cassie, you wanna start with this, but the question is someone who's been positive, and let's say most of these again 80% plus are gonna be at home and resolve, how long before you can resume the biologic therapy that they were previously on? I'm assuming that many of us would probably stop that while they're sick. I don't know that I would because the half life is too long to really stop and it's kind of goofy.
But nonetheless, are some people who had, I think we're taking objection to what Kevin said earlier about you can go buy a serologies and then start right after. But Cassie, how would you handle this?
Yeah, that's a tough question as well. And I agree, certain drugs, what is stopping them for a little bit even gonna do. But I agree I would stop, you know, biologics for sure and methotrexate if someone were infected. But I think, you know, after they recover and echo what Kevin said, you know, seven days after, you know, illness is over and symptoms are gone, I would probably restart their immunosuppression. They were completely recovered and doing well.
Kevin, can you defend timing issue?
Yeah, I mean, think again, it kind of goes back
to what
we were saying before. It's consistent with, you know, the viral shedding data in terms of the viral culture data in association with shedding, you know, after seven days, the virus becomes a lot less, viral. You know, CDC's guidance has been kind of around this symptoms resolve seven more days, and then you're pretty unlikely to be transmitting and likely unlikely to be, at risk for infection. I think, you know, I don't, I think if someone's symptoms resolve, I mean, the chance that they're shedding at that point is very high. They could still be infectious.
And again, I think that seven day period is the buffer where that goes away. So how does that translate to when it's okay to give biologic again or their next dose? It may be fine to do it in that seven days. I mean, they may not be at risk getting sick, but it might prolong their shedding potentially. We don't know the answer to that question.
So for right now, I'm still kind of stuck on this seven days post symptom resolution.
So let me give you a case from Doctor. Laster. This is a psoriatic arthritis case who was off of Humira since January for a total knee replacement. Soon after the patient tested positive for SARS CoV-two, after they developed symptoms of shortness of breath and low grade fever, having been exposed to someone from Brooklyn figures. And then two days into the illness, remind you that they stopped their Humira back in January, the patient's doing horribly worse with their skin and joint disease exploded.
So now the patient could barely get out of bed with excruciating pain. The skin is horrible. Wish we could have used the biologic. What should I do? Can't use steroids.
I don't know that I ever would have stopped the TNF inhibitor because you have this infection. If you're in the ICU, you can stop it, but that's stopping it on paper because you're not getting rid of it. It's still there, there's no negative reports about what TNF is doing in these situations. Until we know better, I would not stop it, and obviously the practice of stopping the Humira for two or three months surrounding a knee replacement sort of idiotic and should never happen. Anyone else have some advice for Doctor.
Laster on how to manage this case of psoriatic arthritis?
The patient was asymptomatic, Jack, or?
The patient had symptoms of low grade fevers, a cough, and aches, but then because they were already off of the Humira and enalumumab, their skin and joints got a whole lot worse. Probably has nothing to do with the timing of the COVID infection, but it's obviously confusing the issue.
I think it gets back to what Alvin was saying before. You have a person who's going to be sick and bad things are going to happen from the extent of skin involvement, from the immobility. So, with this type of, now if you had TB, yeah, no more TNF inhibitor. But for this infection, I think getting back on the TNF inhibitor seems to be the the best alternative.
Let me throw out another thing. What about the JAK inhibitors? You know, the article in The Lancet saying that maybe, hey, they've identified maybe one of the JAK inhibitors might prevent these blocking the receptor on the lung epithelial cells prevents infection. So one of the ID guys wanna weigh in on that. What about a JAK in that case?
Yeah, that's a really good question. And you know, JAK inhibitors and their effect downstream effects on IL-six, I know are being considered as for treatment of COVID-nineteen and yeah, maybe put that person on an IL-six inhibitor, a JAK inhibitor.
Yeah, agree. I mean, I think so baricitinib is the one JAK that theoretically would prevent infection, right? By inhibiting the ADP two kinase system. And again, it's theoretical, but there's other drugs like that as well as losartan, there's a whole list of them from that Lancet article you mentioned. I don't think the other JAKs have that ability.
I mean, all the JAKs show that ability of potentially being helpful in treating cytokine storm and down regulating responses. And it probably depends on when you're using it, but it's really those two separate concepts we were talking about before. Mean, there's a concept of preventing action or preventing worsening if you infected. And then there's that concept of, well, the latter really preventing badness if you've been infected. So some of these may work in one concept, not the other, or maybe beneficial in one concept, not the other.
We just, we're going to have to sort that out with studies. And there's a number of trials as you guys know looking at the IL-six inhibitors, but there's others being banned with other anti inflammatory drugs as well.
So there are a few questions in here that I'll turn into comments. Are chronic placental patients protected? We don't know the answer to that. We're waiting for the results of the Global Rheumatology Alliance Registry to answer that question. Another doctor says, out of an abundance of precaution, we've implemented a policy of screening patients the day before they arrive for scheduled infusions.
Seems like a good idea to ask some questions about infections and symptoms. Screening them by testing would make no sense at all at this point. I wanna ask the panel a few questions about steroids. What dose of steroids would they consider their patient to be immunosuppressed? Arty?
20 and above for sure. Five and below, I don't think so. In between is the tricky part for me.
Anyone else have a bet, like who can top that?
One milligram.
One milligram.
Yeah. The thing, caveat is that all the
thin kiketic person who's on seven and a half milligrams. That's still a risk in that individual. So but that's where I already said that's the gray zone that we really don't know.
Yeah, I would weigh in that there's a gray zone. But you know, if you look at the infection data and you look at vaccine data, you don't like for vaccines, for example, you don't see a whole lot of action with prednisone of five a day in terms of minimizing vaccine responses. You start to see that action kind of 7.5 ish but above that. So I'm kind of with Arty, I'm more of a steam guy or 10 or 15 and you know once you hit that and go above I much more worried.
Doctor. I echo that 10 to 15 window, but it also depends, you know, the patient and the duration of the glucocorticoids and their comorbidities, but that
10 to Our buddy and father Lenny Calabrese makes a comment that hydroxychloroquine studied in HIV eight years ago found immune activation decreased but viral load increased. And that also another study of prophylactic hydroxychloroquine exacerbates chikungunya, begs the question about how we use this, where we use this and the timing that we use hydroxychloroquine. I already brought up that point earlier as well. Anybody have any comment about those particular studies? Kevin, are you aware of those
Yeah, I am aware of them and there's also the study already mentioned with influenza A. So obviously all viruses are different. I mean, flu A upregulates different cytokines. It behaves totally differently in some ways than this coronavirus. So it's hard to extrapolate between different viruses and these different studies, but clearly, I mean, I think the studies mentioned, I mean, the issue here that we just, we don't know if this drug works or a lot of these other drugs work until we test them.
There's a question about new patients. What are your policies for those of you run rheumatology clinics? What are your, so Kevin, take a breather on this one. What your policies on seeing new patients? Alamatsumoto, are you seeing them?
We are. I think there was some trepidation by some of us, but we are seeing patients.
Remotely or alive?
I'm sorry, so if they are truly an urgent emergent patient, we do have a skeleton staff that will see the patient. But we are seeing new patients by telemedicine as well. And we're just doing the best we can, getting as much old records as possible prior to the visit and being somewhat circumspect with patients about the fact that we sometimes can't make a definitive diagnosis at that time and that they will need follow-up with us at some point.
Anybody else want to weigh in on that? Alvin, what are you doing?
Well, the same type of thing, really on acute, like I said, the one vasculitis patient I had to come in today. Challenge in part, Jack, even if I see them today, can't get x rays, I can't get blood work, I can't get an MRI. I think Arti touched on this. Mean, else is shut down. So I'm stamping them out with a little bit of Medrol DulcePak and like the day we started some hydroxychloroquine on the patient.
But we are seeing the everybody else is just remotely and all the positive ANA's joint pain, arthralgia, rheumatoid factors, they're being seen after the summer, maybe in the early fall.
We need to see people though. I mean, there's a there, we can't punish the patients, and they need our expertise. And, and as Alan said, I think we're learning Alvin would be proud of me yesterday. I had this lady on the video pinching her skin. I was like, what the hell am I doing?
Like that, exactly. Now go down the finger and show me. We're all learning.
Very good.
That is true. So what's happening, many of you do clinical trials. What's happening to clinical trials right now? This is a disastrous kind of development. Artie, you do lots of clinical trials.
What's the story?
Oh, it's almost grown to a halt. We've done some video visits every it's way out of the window. I think there's going to have to be tremendous understanding at the agency that there's going to be nothing but violations. The trials are so strict about when you have to do certain things and yet the university is saying they're treating it. I don't want to say that they're treating as optional, but they're not treating it as urgent.
So they're really saying, your staff ought to be minimally they can work from home all they want, but they ought to minimally be there,
which means you can't really do a lot.
Yeah. Arty, the same thing. I'm involved in 13 clinical trials. My study coordinators are home. They're not even allowed to come into the clinic and everything's been put on hold.
So I'm getting all these letters and things like this, but it's just a total nightmare.
I think the companies are gonna have to renegotiate endpoints with the the regulatory agencies and maybe interim analysis that are gonna have to suffice because I mean, these are billions of dollars that are circling the drain right now.
You know, just to add to that, I was involved in a discussion today with the protocol that's being halted temporarily to new enrollment, but for the people that are in the already currently on study drug, and I encourage the sponsor to very quickly do a validation study to figure out how to validate your primary outcome measure virtually. And I think it might be possible, but I think we're gonna have to start doing these things because we're gonna run into these problems. We're not gonna be able to measure what we wanna measure in some of these patients. We're gonna have a lot of missing data. I think there's, I've echo just what Arty and Arty said, I mean, all the institutions kind of ground up halt and I think most sponsors have stopped enrollment in most trials and it's kind of moot point anyway because you couldn't get anyone to come into your clinic to enroll anyway.
Yeah,
so I think for us, because we're not associated with the university, we are trying very hard to at least maintain of the study visits. It's just really a shame if you have to stop a study medication because you just kind of totally lose all of that data. But certainly there have been no new patients that have been entered into studies.
All right, I got a few more questions that I want to end. Is anybody having a right now a hard time getting Plaquenil for their patients? If so, raise your hand. Variable.
Variable. Patients, yes, some patients, no.
So again, we're all predicting a big time shortage. It hasn't quite yet happened, but it's still worrisome that it's going to happen. Someone asked about viral loads or viral loads at all important here in following patients or managing patients, Cassie?
I know that's been looked at in, you know, a bunch of the some of the observational studies that have been done. You know, I don't I don't think we I don't know a whole lot about the the role of the viral load in management. I'd imagine it correlates with, you know, somewhat with severity of illness, but I'm not entirely sure. Kevin?
The answer is no, because first of all, it's the amount of viremia in these patients is quite low. And I mean, if you're gonna do a viral load, it's off a blood sample. I don't know how you do a viral load off a nasal swab. The more you swab, the more virus you get. I don't know.
So, you know, there really hasn't been the ability to look at antiviral loads in blood. I mean, there has been some data, like Cassie said, from China, but again, the percent of people who are viremic is actually quite low.
So in your clinics, are you having patients who come in, are you having all patients wear masks? Are you having your staff wear masks? Are you wearing masks? Let's go around the horn, Cassie.
This is probably different by institution protocol, but at the Cleveland Clinic, patients are getting screened at every door for symptoms, respiratory symptoms. And if they have them, if they have a cough, then they are wearing a mask. And employees are all being temperature screened every time they entered the building. So patients with symptoms are having masks placed. Some certainly patients who want to bring in their own masks from home and wear it in clinic, we've seen several of those.
But in general, our healthcare providers in the clinic setting are not wearing masks prophylactically unless they have respiratory symptoms.
Kevin.
Yeah, you know, about three weeks ago, myself and my staff made the decision that we were masking with every patient coming through and any patient with respiratory symptoms was also given a mask. As Cassie said, we did not have enough masks non, or asymptomatic people masks. We started doing that three weeks ago. Now that was just my clinic. Now, of course, on a chronic chest infection clinics, it's a little bit different.
Everybody's cough and we don't know who the heck has what. But our university as of three days ago went to full on mask policy for every healthcare worker, no matter where they are in any patient contact setting. So again, for patients, we don't have enough masks to give everyone masks, but we're giving masks to people who have respiratory symptoms.
Hardy. Pretty much same as Cassie. But who knows what it'll be like tomorrow.
How are you doing that in your outpatient practice?
Very similarly to Kevin. So everybody is screaming at the door. They ask the questions, have you been in contact with anybody? Have you been traveling? Do you have any symptoms?
And everybody gets their temperature down in the ear. They have to get a tag saying they have been screened before coming in, even the UPS guy before delivering something. And also we have a policy, any physician who's in contact with a patient has had the mask on in the hospital and in the clinics. But everybody's screened and all providers are wearing masks in any patient interaction.
Alan.
So unfortunately, we just do not have the masks or certainly not the PPEs that's necessary. Certainly not even for our staff and certainly not to be able to give to patients. What we had a long discussion about this morning is whether or not we would request patients to wear some sort of covering over their mouth and nose, an informal covering over their mouth and nose, and we would suggest that or even require decided to hold off on that until we see the formal CDC recommendations. But I think probably patients will probably be encouraged to wear some sort of covering over their mouth and nose when they come in to see us.
So in this era of shortage, can masks be reused? Kevin, Cassie, what are you, what's one of the rules?
I'll just tell you, it's been because for weeks we've been, get one mask a day and we're encouraged to actually use the mask every day and try to do it as long as we have a plastic bag or a paper bag with name on it you know that we're supposed to stick it in and try not to like get any contamination anywhere and then pull it out the next day and wear it. So our institute is using as of a few days ago. I mean, spent a couple of weeks helping people troubleshoot that problem. And we were looking at youth systems, we were looking at ozone systems, ways to decontaminate our mass, actually most taking them off and wiping them with the Oxivir wipes and sticking them in our bag. I mean, that's what we were doing.
But we just started using a system that is an ozonator. And I know Nebraska kind of pioneered some UV system. People are kind of doing one or the other, I think. Cassie, what are you guys doing?
Yeah, it seems when necessary that everything can be reused. Our institution just started kind of collecting PPE for being reused. And there was this company in, in Ohio, I forget their name that's come up with one of these technologies for disinfecting n95s that I think use aerosolized hydrogen peroxide that we're going to start using next week. I've heard about the UV. I was talking with one of our immunologists at our sister hospital who had some reservations about UV for like fabric mask because there might be like shadows from the creases and that that might not be the best idea but but we are going to be using these various technologies to reuse face masks and other PPE.
Yeah you know I micro did a couple of them it didn't didn't turn out so well.
I think it's like a hot on fire.
So I want to remind the panelists and audience that already covered and I published a paper a few years ago on patient self joint exams. So it must be worthwhile. Artie, are you doing the Alvin joint exam or you're having the patient do this and then this and then this and up and down and shoulders out or are you doing something different?
A little bit of both. I mean, do the prayer sign for some there's a lot of things that you can do. The patients are of course very good at telling you what joints are tender. They're not as good about swollen. And they never could distinguish necessarily bony swelling from gushy synovial swelling.
So there's just no substitute for that. I think Alvin may tell us maybe in a couple of years, they can each have their own ultrasound attached to their own iPhone. And then we could do it all remotely maybe. But yeah, it's another thing that we're learning, really dependent on the patient reported outcomes.
Are we working on the ultrasound?
Go ahead, Alvin. Say
it again?
What have you learned about the video joint exam, especially with more intense use this last week?
So yes. So now as I kind of research the world literature and like the one thing we say it's you know the inability to make a fist is a early sign of tenosynovitis. So all those things we're beginning to see. And I still look for that little question in between the MCP's. If I can't see that little groove, that's a sign.
Hey, have some puffiness there. Now the whole mechanics hand, these whole robust guys, arthritis, robustus, all that stuff is the issue. But I'm putting that together with my blood work, my x rays and all those other kind of things. So like Alan Matsumoto said, we can put enough foot in the waters and as we learn this, we're gonna, hey, tweak things. We might even do some other clinical studies to say, hey, this is what we're finding out.
But I think people really gotta dive into this instead of sitting back and just waiting to see what's gonna happen.
So there is in all the questions, and by the way, we've got over 150 questions. We're not gonna get to all of them. We're gonna end it with this last question, and we'll try to answer the other ones, maybe online in room now. But one of the overwhelming questions we keep getting is, I'm getting inundated with requests to write letters. I told you what my policy was.
And again, these are letters for your patients, families of people, but do you have a policy? Tell me what your policy is on writing letters for patients about their condition, where they should go to work. Who wants to start with
that one? Go Alan ahead, you go.
Yeah, again, as I talked about, that is a very difficult situation that we're placed in. Some cases it's clearer than others when they're on immunosuppressive medicines and they're in high risk situations. And, you know, I think I generally have a short telephone conversation with them. I express my concerns that they don't, they are not really immunosuppressed and that there's, and the lack of data that we have. But for the most part, it is extremely difficult to pass those kinds of value judgments for somebody else.
And ultimately, I think we have to respect that.
Art, do you have a different view?
No, it's individual. It depends on all those factors that I said, so many things go into it. There's no standard letter. I'm not finding everybody's a little bit different.
Definitely not a standard letter. I've written a lot of letters for stating it's medically, I feel it's medically necessary for a patient to work from home if possible. And I'm 100% supportive of that whoever can work from home should work from home. But as far as the being off work question that can be difficult in case by case basis. As was mentioned before, you know, patients perhaps, you know, that are heavily immunosuppressed or immunosuppressed and are working in nursing homes or you know, happen to have a patient who's on a biologic and was supposed to man our COVID board in the hospital, you know, certain perhaps she should work on another floor.
But everyone's different and it's tough. There is no one solution.
Kevin, last word on that.
Yeah, I don't know that I can add to what they all said. Agree, but I do think that modifying people's work who are at high risk for complications is important. And I think that's a risk for that you should explore individual patients.
I wanna thank our panelists, Alan Matsumoto, Alvin Wells, Arti Kavanaugh, Kevin Winthrop, and Cassie Calabrese for participating in this great town hall. This is gonna be the first of weekly meetings on RoomNow. We're gonna start with Tuesday night rheumatology. If you signed up for this, you can sign up for that. We're doing grand rounds every week at this time.
Little intro, half hour lecture, lot of questions. We'll get to some of your COVID questions in the future, but next week, Room Grand Rounds, Tuesday night rheumatology, the safety biologics with me lecturing unfortunately. But there'll be other great speakers. Again, thanks to everyone. Tell your friends this will be on room now and on YouTube for viewing as of tomorrow.
Good night everyone.
Thank you guys.
Good night, guys.
Thanks for
having us. Thank you. Stay safe.



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