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6

What is it like to survive Ebola?

Dr. Craig Spencer takes us into his isolation room at New York City's Bellevue Hospital, 10 years later.
6

Long before Dr. Craig Spencer became a wonderful friend to me, he had a very public brush with death. In 2014, Craig contracted Ebola virus, while working in an Ebola unit in Sierra Leone. He flew back to the US, unaware he had been infected. When he started showing symptoms, he followed the protocol that Doctors Without Borders had for workers like him, and he reported to Bellevue Hospital in downtown Manhattan. Nobody else was infected.

The media went nuts and it was a national story. The rest is history. Nobody else got infected and Craig recovered. Today, we’re going to go very deep into that history.

Some personal backstory: Since 2020, Craig and I have become close friends. I’ve asked him about Ebola a handful of times, but this conversation is the longest and most in-depth one we’ve had on the topic. Prior to this interview, I’d never heard Craig get into the weeds on what his condition was at its worst in 2014. Rather, he always centers other people when he talks about his experience with Ebola—such as people in West Africa who didn't get the kind of care he received in the US.

I admire that. But I also have long wondered what he endured. How did he find out he had Ebola? How did he take the news? How sick did he get? How low were his platelets? How poor was his liver function? What was his day-to-day life like in isolation?

I’d always wondered about these issues and more. I am grateful that Craig really took us into his hospital room in this in-depth interview. I hope you find it as illuminating as I did.

Faust: What did [the PPE] look like? Can you tell us specifically what they were?

Spencer: Space suits. I mean, it looked like Buzz Aldrin landing on the moon…

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Transcript:

Faust: Hello, Jeremy Faust, medical editor-in-chief of MedPage. Today, I'm so excited to be joined today by Dr. Craig Spencer. 

Craig Spencer is an emergency physician and associate professor at Brown University and the Brown University School of Public Health. 10 years ago, he was working with Doctors Without Borders treating patients with Ebola in Guinea, returned to the United States, and later found out that he had contracted Ebola virus. This month marks the 10 year anniversary of his treatment at Bellevue Hospital and ultimately his discharge, and he has since gone on to do great work. 

Dr. Spencer, Craig, thank you so much for being here.

Spencer: Thank you for having me on.

Faust: So how did you find out 10 years ago that you had Ebola?

Spencer: You know, I really found out when my provider sat down next to me on my bed when I was at Bellevue Hospital and said, "Well, your Ebola test is positive." But I kind of knew earlier in the day when I had a fever and had been taking all of my anti-malaria medications religiously the whole time that I was away. 

Having been in an environment where I worked every single day with dozens and dozens of patients who had Ebola, sure I was using protection and we knew that that reduced the risk to nearly zero, but not to fully zero. So I had an idea, then I had certainty, then I had a couple weeks of difficulty.

Faust: Yeah. Do you know how you got it? What was the window from the last patient you treated until you had symptoms until you got diagnosed?

Spencer: Yeah. The last patient I treated was somewhere around maybe October 13th or 14th. I got back to the U.S. on October 16th, and I think went to the hospital October 23rd. I'm sure a quick search of the internet will bring up hundreds of articles determining whether or not that's true. So it was probably around nine days or so from the last patient contact until I developed a fever. 

In terms of where I got sick, almost certainly inside the treatment center where every day I took care of folks for hours and hours, who often at the last moments of their life were having a lot of vomiting, having a lot of diarrhea, were really dehydrated. And the team that I worked with were absolutely intent on making sure that if people were going to die, that they were going to die with some dignity. Not covered in their own excrement and their own feces, their own vomit. 

That is absolutely the highest risk moment, when taking care of people where there's just virus all around. Even in personal protective equipment, sometimes it can get through.

Faust: Do you have a moment where you thought, "Oh, I made a mistake," or is it just the law of averages, something happened?

Spencer: It's almost impossible to describe what it's like to be in a place like that to folks that have never been in a place like that. But every moment felt like a landmine from the time you got in the country and started taking care of patients. 

From the first patients you saw the first time you put in an an IV on someone -- something that I do all the time and I've done thousands and thousands of times -- but it was almost as if I was doing it the first time in West Africa in Guinea, because I was in a really hot suit and it was a really hot day and I was already dehydrated and I was wearing two pairs of gloves, and I was scared, scared, scared. Knowing that if I missed, if something happened, if I poked myself and had a needle stick injury, I would die. It's not that I would be infected. It's not that I would get sick. It's that I would die.

Faust: And by the way, that's just a bravery that you and people like you accept, and I just want to acknowledge that that is awesome and amazing. 

When you came back to the United States, you felt fine. You went about your business, you famously went bowling, you got an Uber, all these things -- and people lost their collective minds because they thought that you were putting people at risk. I know that you don't feel guilty about that because you also know about the dynamics of the spread. This is not a virus that spreads asymptomatically; it's got a long incubation period.

How did you handle that moment? You probably were thinking about your life, but did it affect you that people were saying, "Craig Spencer's not a hero, he is a dangerous person who put us all at risk?"

Spencer: Honestly, no. I don't think anyone that went to do that and the thousands of other people from around the world that really showed up, including tens of thousands of people in Guinea, Liberia, and Sierra Leone that put themselves and their own family on the line -- those are the real heroes here. 

But I don't think anyone that showed up from the U.S., people like myself, went there to be a hero. I think we went there because we heeded a call knowing that if we didn't put this out at its source, we were going to be in really big trouble if this spread further internationally. 

At the time that I got sick, there was no TV in the room where I was treated. Apparently they had just that morning checked all the boxes to be completely prepared and ready for an Ebola patient. And maybe the one box that they didn't see, because it was the least important at the bottom, was to make sure there was a TV in the room with cable and 2,500 channels or something. There was none of that. 

So that was probably good, right? I had an idea of what was happening outside, but that was not at all where my focus was. 

What I knew then and what history has proven to be correct over and over again is that you don't transmit and you're not infectious until you're symptomatic. And that the public health guidelines that the organization I was working for and that other public health organizations had developed around that time worked. They worked, they worked just as they were supposed to. 

And I am not only proud of the fact that they worked, but I will stand up again and again and say it's really important and really valuable to have organizations, public health organizations, that can give us that guidance so we're able to do this and do this correctly. It's really easy to give broad guidance that doesn't accord with the science. That just means that people aren't going to support it, aren't going to follow it, and then we make ourselves a lot less safe.

Faust: And I just want to reiterate for this audience that unlike COVID, where we learned about the virus in real time, this is not the case with Ebola. We understand from experience that what you just said is true. 

And the example I always hold up is that the gentleman who passed away from Ebola in Texas was discharged from the ER with Ebola unbeknownst to anybody, went home, hung out with his family, they were taking care of him for days with no kind of precautions, and none of them got Ebola. But then when he was readmitted to the hospital and they diagnosed him, all the precautions were in place, and two nurses wearing full PPE did get Ebola. 

So it really is truly a disease that is different than say a COVID or an influenza in that it's transmissible at the end. So I just want people to understand that this is not an area where there's known unknowns. We know this thing.

Spencer: Yeah. And it's also important to point out the fact that very much unlike COVID, where there is asymptomatic transmission and we know that virus can linger in spaces, whether it's poor ventilation, for example. You can walk into a room unbeknownst to you and be exposed and be infected, which is why we had a whole host of precautions in place over the past nearly five years. 

With Ebola -- Ebola is a disease of compassion. It is transmitted by caring. And so it is people like healthcare providers, people that put themselves on the line, many of them often with inadequate or insufficient personal protective equipment but still do this because they feel duty bound to take care of people at the most infectious period of their illness. And also family members, the people that if you can't find a hospital to take care of you, if you can't afford to get treatment at a clinic, you're always going to have your family there to do this, regardless of the risk to them. 

And that is where Ebola spread. It's spread through compassion. It's spread through care. That's why really close family members and really heroic local physicians in most scenarios were the ones that were on the line and most likely to be exposed.

Faust: Agreed. And that's why I've written a lot of stuff over the years, but my piece about Kaci Hickox in which I said that we ought to be celebrating people like her and not punishing them with unnecessary precautions, I think that stands and it stands for all of your colleagues. I have so much admiration for you and everyone else in that space. 

I do want to talk about the moments after that diagnosis. And you know, Craig, you and I are very good friends, but we haven't talked about this part. I've heard you talk a little bit about the ICU at Bellevue Hospital, but can you just take us through literally the moment? Okay, you have Ebola, or at least your test was positive, which is the you have Ebola moment, literally what happens next? Like, here, put on this mask, put on this space suit. What is your doctor wearing at that point? And tell me just the next five minutes, the next 10 minutes, what happens in those moments?

Spencer: So all interaction that I had had once I had arrived in Bellevue, in the treatment room itself, was with providers wearing personal protective equipment.

Faust: What did [the PPE] look like? Can you tell us specifically what they were?

Spencer: Space suits. I mean, it looked like Buzz Aldrin landing on the moon, but these PAPRs, this type of personal protective equipment, are way more comfortable for them. It's meant to be much more protective, much easier to put on and take off, and to lower the risk of infection for providers, which is key and very important. 

So yes, we're having all these conversations. For me, the next 19 days, every conversation was with someone, usually a nurse in my room in one of those spacesuits. But in the first couple minutes after my confirmed diagnosis, the question was like, okay, what do we do next? 

And what I appreciated was having a medical team that knew that when it came to treating Ebola patients, compared to them I was the expert. Right? This is something that I had done hundreds of times in the past month before. And so we were able to chat about things that I saw, things that I worried about, things that we should be thinking about, and they were able to be there, be present, listen, but also kind of strategize next steps. 

"Okay, let's think about some of the investigational medications that maybe we could look into. Let's think about how we're going to handle this, this, this or this. What should we do with your family? How do we think about this from a media perspective? Do we hold on announcing this? Do we wait?" And so it was a lot of those conversations, more logistics and kind of nuts and bolts of what comes next. 

I don't particularly remember thinking, "Oh my gosh, this is my death sentence." I do remember thinking more so over the next couple days of how incredibly lucky [I was] and almost guilty, in a sense, that I was able to come into Bellevue in the afternoon and by that evening already have a positive test, know that my test was positive. 

Because for the past six weeks, I had taken care of patients, many of whom waited days, if not longer, to get their test results back. And that whole time being in limbo, not knowing what's happening, being inside an Ebola treatment center -- and maybe you have just malaria, or maybe you have malaria and Ebola but you don't know -- and then maybe you finally get that diagnosis days later. 

I had it within hours and I was grateful for that, but also felt a bit guilty that I had access to something that the hundreds of people I had just seen and taken care of didn't.

Faust: Yeah. And we'll come back to that. That's an area where you've spoken eloquently many times, and I want to reiterate that too. 

The special pathogens team at Bellevue did wonderful work. I think that they were as prepared as anybody could be. But I still don't even know where you went. Were you in the ER when you came in, or were they like oh wait you're a PUI, person under investigation, or you're a high likelihood Ebola patient, you're going right to the ICU. Where were you literally and what were you wearing? Did they put you in any kind of protective equipment?

Spencer: That's a good question. I don't think they dressed me up, which is probably good. I think I was focused on some other things. But you know, I went straight from the ambulance up to a treatment room, a dedicated treatment room, so there wasn't an intermediary stop. It was directly from ambulance to treatment room -- a negative pressure where you put a PUI, a person or a patient under investigation. So yeah, a direct line from one to the other.

Faust: Is that the ICU in that case?

Spencer: That was a room that had been kind of retrofitted. It was previously where tuberculosis patients that needed a longer stay for treatment in the hospital would stay. So that area of that floor had been kind of repurposed as the special pathogen unit where they would take care of Ebola patients and anyone else with concerning, high-consequence diseases.

Faust: Is that the room where you stayed for the next several, I guess, couple of weeks?

Spencer: It was indeed. I went in and had a 19 day stay in the exact same spot. Maybe, I don't know, 90 square feet, which in New York is pretty spacious, but after nearly three weeks it starts to feel a little small.

Faust: Yeah. I was wondering, because again, with all the protocols in place we ought to believe that it's a very containable pathogen, and yet if I'm in the ICU and the guy in the next booth has Ebola, I might be a little concerned. This is not the case.

Spencer: Absolutely not. No, a hundred percent. 

The people at greatest risk really were me -- my risk of dying just looking at the numbers was a coin flip. But the next greatest risk of course was the nurses, primarily the nurses. There were many of those every single day that came into my room to help with all manner of things, and they were at the highest risk of exposure, them and the other healthcare providers. But in terms of nosocomial transmission, transmission around the hospital, the risk of that was zilch.

Faust: Right. And again, hats off to the Bellevue team. One of the big things that we as doctors don't think about are some other risks like waste management, like what happens to the stuff coming out of your body, the toilet. And they have to deal with that. That's a really big challenge, and they did a remarkable job.

Can you tell us just about how you felt in those first few days and how sick you got?

Spencer: How did I feel? You know, it's not really a good metric. I've said to people, imagine that you had a stomach bug and the flu together, and then multiply that by 10, and maybe that starts to make you kind of feel what you feel like when you get to your worst. 

Maybe one way to describe it is that your fever gets so high that you take medication to bring it down, and it comes from 105 down to 101, and when your fever gets down to 101, you feel like you're on vacation because it feels so much better than 105. 

I don't think there's really a good way to describe it, but it's kind of the worst that you felt with all of the things you've ever felt multiplied by a factor of 10. That probably does a decent job. 

It's not like that the whole time. There are different waves of symptoms that people have. You may go from like intense fatigue to a really bad sore throat, a headache, difficulty breathing, vomiting, diarrhea, muscle aches. It's kind of a whole host of symptoms that maybe will crash in and then fade away and then progress in different steps throughout the first week to 10 days of your illness. 

And if you can make it through that, the likelihood that you're going to survive gets higher every day.

Faust: Yeah. I'm just curious how your days were, because sometimes you're so sick that you just can lie in bed all day and time goes by and there's no need for a book or a television or a conversation. You're just there and you're just alive and you're existing. And there's other times when you don't feel great, but you'd say, "Hey, I'd like an iPad," or something. What were your days like?

Spencer: Looking back, I don't know how I spent them other than sending messages or speaking to close family. I didn't speak to reporters, even though many tried to contact me. It's not like I got to sleep in and hang out and eat potato chips and sit on the couch and watch TV, but I was able to focus on some things that needed to be done. So logistics things, thinking about my friends that were under quarantine, thinking about my own partner, thinking about my family, and also trying to get up and exercise, do things, move around, do yoga, to just kind of move my body.

They had got a Nordic track, like a stationary bike, that my physician demanded that I got on for at least 15 minutes every day. And there were some days when I just had zero desire to do that, but she forced me to do so. I guess she didn't want me to get any clots in my legs or whatever it may be. 

So I think that that was really helpful. But I certainly didn't catch up on the Lord of the Rings trilogy or anything like that. It was mostly, basically that -- just trying to survive.

Faust: And this was the early years of -- well, not that early -- of iPhones and iPads and that kind of stuff 10 years ago in 2014. Did you take notes or records or just even voice memos? Do you have a record of your feelings and thoughts at that time?

Spencer: I do. It was also the beginning of the cloud, and so I was able to take some pictures and have some conversations and try to save them. That wasn't my primary focus, but I do recall in the aftermath and then years later coming across some of those messages and photos. 

Because when I left the treatment center, nothing could come with me. So that included my glasses, that included my phone, anything that I went in there with stayed in there and then ultimately got incinerated. And so [when] I left I didn't have a phone, didn't know how to upload my things to the cloud and whatnot. So only some of the things came across. 

But, I don't know, maybe it's good that I don't have too deep or profound a memoir of those days. I don't know. I don't know whether that's a blessing or not.

Faust: And in terms of how sick you got, there's feeling crappy and laid out and spending your days in bed and as you said, not catching up on the latest streaming show. But then there's also what you and I would call being really sick, which is that your life is in danger, which is that your blood work or your vital signs or your imaging show objective evidence that you are a person whose life is in danger. 

Can you just tell us a little bit of how sick you really got in terms of whatever marker it might be? Did you have bleeding, were you anemic, hyponatremia, low sodium, those kinds of things. How bad did things get for you?

Spencer: You know, it's hard because I know how bad they got for other people. So it seems almost hard complaining about it. 

So for most folks, the big thing is that your platelet numbers, the things that help your blood clot, can go really, really low. And mine got really low. So you need to think about a couple complications of that. One, you can just start bleeding, which people do. But also because if you want to do procedures like put in a central line or other things where you can continue to monitor vital signs and other really important things, then those things become a lot riskier to do. Because if your platelets are very low, you can cause bleeding, which can cause complications. 

So very early on, my providers and myself chatted through and said, "Okay, let's put in a central line now before things get any worse." And I'm glad that we did. They were able to draw blood from one spot. It was a lot more convenient, and we could do it in a way that wasn't more dangerous, as it would've been a couple days later. 

Liver enzymes go up and so it looks like you have a shock to your liver -- because you do. Anemia, your blood levels will go down. You'll have a whole host of aberrations in simple things like your electrolytes, your sodium, and your potassium. Mine were all over the place. I appreciated the fact that every day we'd chat about it and say, "Okay, things are getting a little bit worse today. Okay, let's hope they plateau out soon." 

But I remember Laura Evans, a doctor that was primarily taking care of me most days, one day came in, sat on my bed and said, "Okay, your liver enzyme looks like this, this looks like this, this looks like this. And your VDRL is positive." And I was listening and it took me a few seconds. I looked at her and I said, "I'm sorry, what?" And she just smiled. The VDRL is basically -- she was trying to joke and tell me that I had syphilis in addition to all of these things. 

So it took me a second to realize that she was joking and what it actually meant, but I kind of appreciated that it was her way of saying, "Yeah, I know that this sucks, but let me see if I can try to lighten the mood a little bit." So it was funny.

Faust: The coin flip. You casually said, "Oh, it's a coin flip if I live or die," which is not a great set of odds for anything. You were obviously concerned about other people, and that's who you are, Craig. But at some point you had to be thinking, "Oh my gosh, I might not make it." 

Were there times when you thought -- I'm not gonna make it -- or was it always like, "Well, it's 50/50, but I'm here. I'm at Bellevue, I'm getting great care. It's probably 80/20,"? Were there times where it's like, "Oh, this is getting worse. I'm not going to make it."

Spencer: I can honestly say, and I've thought about this a lot and been asked about this a couple times, there was no point in my illness where I thought, "All right, you're not going to make it. This one lab test or this finding or whatever just portends a negative outcome for you, and what are you going to do about it?" I just don't recall thinking about that.

Faust: Do you remember a moment when you thought, "Okay, I'm going to make it, I'm going to be okay"? And if so, did that come before or after any experimental treatments that you received?

Spencer: I received a bunch of experimental treatments that did absolutely nothing for me, and probably only made me worse, if anything. I got convalescent plasma, which I've spoken about and written about. I don't think that it helped me. I don't know that it hurt me, although after I got that I needed oxygen for a day or two, so I don't know. 

Was there a day where I was like, "Oh, I got this"? I think once things plateaued and my numbers weren't getting any worse, that was certainly reassuring. I knew that even for how bad I felt and looked, I didn't feel probably as bad or look as bad as most of the patients that I saw in Guinea. That was remarkably helpful. 

And I think there was a point at which I was offered one of these medications you might remember from that time, ZMapp and ZMAb, these kinds of hard-to-get medications that were unproven, but seemed to be the best option and the best chance of help. I remember I was offered one of these medications at a point, after I'd already tipped over into the 'I'm likely to survive' phase, and ultimately denied taking that medication, knowing that if I didn't take it, probably it would be helpful for somebody else somewhere earlier on in their course.

Faust: Let's talk a little bit about the people who took care of you. I hear rumors that at some point you felt well enough to get some pretty good Korean food in there. Tell me about the nurses and what they were bringing you.

Spencer: What was really cool about the nursing staff and seeing them just a few days ago at this event at Bellevue, is just how reflective of the U.S. it was in that it was just really hard working, amazing, and almost exclusively immigrants. It was just really, really, really cool to see people from all over the world, from East Africa, from Haiti, from Korea, that had moved to New York, had worked as incredible nurses in the ICU, and then had stepped up to take care of me and other patients. 

In addition to being amazing nurses, many of them were amazing cooks. So one of the Haitian nurses brought me homemade Haitian black rice one day, which was amazing. June, the Korean nurse, brought me in some homemade bibimbap one day, which I absolutely love. It took me a while to get my appetite back, but if there was anything that was going to do it, it was absolutely the stuff that they were bringing in for sure.

Faust: That's great. Let's talk a little bit about future outbreaks. People hear the call, they go, and they want to help. When they come back, how should we in this year deal with that? What kind of testing, what quarantining or isolation -- what's the way that people should come back from, say, a Marburg outbreak that's looking to be successfully dealt with in Rwanda right now? If anyone was over there, how would you recommend we deal with that?

Spencer: I mean, we've learned a lot in the past decade, but a lot of what we knew a decade ago still applies, right? 

So we have systems in place where people will be on lists, they'll be followed by the city, the CDC and the City of New York and the Department of Health will be aware and will be able to follow folks like this. It's fit specifically for people that have worked in treatment scenarios, for example, and not had high risk exposures like a needle stick, et cetera. Kind of the normal exposure. 

We know what works. We know that routine monitoring, taking your temperature twice a day, having contact tracing, having connection with local health authorities, and then reporting your symptoms as they develop and working through these algorithms, through this triage with this time-proven process for when you actually need to seek any type of higher care.

People say, "Okay, well why don't we just quarantine everybody that comes back just to be careful?" The problem is, one, it doesn't help. Two, it might hurt. And it might hurt because it makes it a lot harder for people to be able to respond. If you know that you're going to go somewhere for six weeks and then you're going to come back for three weeks and have to sit in a hotel room or in a hospital bed or whatever it may be, out of an abundance of caution, that means that that many fewer people are going to be able to respond. 

We need people to respond to these outbreaks. We need people. When I talk about this -- in Guinea, Liberia, and Sierra Leone where I was working as a physician, they had almost as many physicians in those three countries combined as the one single hospital where I was treated for Ebola in New York City, right? So if we want to contain these things and keep ourselves safe, we need to respond to them at their source quickly. That's often going to need people that are willing to donate their time and maybe put a little bit of their safety on the line. 

But we know that we can manage their return in a way that is both safe and non-stigmatizing, but also supportive in a way that gets other providers to be able to respond.

Faust: In light of what you just said, why do you think Ebola has never spread outside of a few hotspots?

Spencer: Because it's pretty hard to transmit, right? Everyone just thinks that it's like COVID or that it's this highly contagious virus. It's not, it actually doesn't do a good job of spreading. It tends to kill a lot of the people that it infects. And maybe that helps spread as part of funerals, et cetera, or in healthcare settings. But with pretty basic preventions, you can often slow down or completely stop the spread. And we've learned a lot about that. 

That's the important thing, right? In the United States, when we have universal precautions in hospitals, even if we're not wearing personal protective equipment, you're likely not going to have massive outbreaks. Maybe you'll have some you'll recognize and you'll put in place other protocols. 

But in a lot of other places around the world, even some of those basic things that we think of -- running water to wash your hands, an adequate supply of gloves --may be in short supply. That makes it a lot harder for them, especially in healthcare facilities, to stop this spread.

Faust: And what's your take on the new-ish vaccines?

Spencer: So we have vaccines for Ebola, which are absolutely fantastic and super helpful in outbreaks when we can use them as part of a ring vaccination strategy -- to identify people who got sick, find their contacts, and then vaccinate them as quickly as possible with the hope of preventing them from developing Ebola, which has been very effective. Those vaccines are great. Thankfully, there's a stockpile of them that sits with the World Health Organization and countries can request them pretty quickly once there's an outbreak. 

There are also treatments, a couple FDA-approved treatments, for Ebola. Monoclonal antibodies, which people may know about from COVID. Basically these are just ways to lower mortality and to provide some type of treatment for a disease that can have fatality of 40% or 50% or 60% if not higher depending on the circumstances of care. These treatments are great. 

The problem is that since they've been approved, there have been five Ebola outbreaks, and only a third of all patients that have been diagnosed with Ebola since then have actually received these treatments. That's because even if they're really good, they're not always accessible, especially to the people in the places that they need them.

Faust: Craig, are you immune to Ebola? Do you know what your antibody status is? Do you know what the possibility is that you could have Ebola reactivate? Tell us about that.

Spencer: I don't want to find out. But what we do know is that we understand there's long-term protection. If you measure my Ebola titers now, they'll be really high. We assume that that means that I can't get infected again with that single strain of Ebola -- of which there are multiple strains -- so Ebola Zaire. 

There's also Ebola Sudan, which caused outbreaks two years ago. We don't know what protection against one means against the others, but I don't necessarily want to find out in terms of reactivation. 

We know that there was an outbreak a couple years ago in Guinea that was linked back to a survivor who had this recrudescence, this virus that had been dormant in their body that kind of came back alive and was transmitted to another person and caused an outbreak.

We've also had a couple cases where people have had a meningitis from virus that was long thought to be gone that happened to just be hiding away somewhere in someone's central nervous system, for example. What do we know about this as a larger scale phenomenon? We know that it's extremely rare. There have only been really like a handful of known cases. We don't know how prevalent it is. 

Does it mean that, for me, I need to continue to be worried about the possibility that Ebola will someday kind of erupt? I don't think so. It doesn't seem to be the case. But I tend to be a little more thoughtful and careful in that I have a family member that needs an organ transplant and I've taken myself off the short-list for that because, even if there's a one-in-a-million possibility, I don't want to tempt that one-in-a-million possibility. 

So this is still an area in which we've learned a lot over the past decade, but for which we still have a lot of questions that remain unanswered.

Faust: For most people who haven't heard you speak before, they won't realize that to the best of my knowledge, this is the interview where I've somehow made you talk about yourself, which you usually don't do. You usually quickly pivot to talking about the patients that you flew over to take care of and the people who really are at the highest risk. Tell me about, just so people know, what your concerns are with how resources are allocated. For the people who haven't, unlike me. I've heard you say these words a hundred times, but the usual Craig Spencer interview is about those places and those people, isn't it?

Spencer: Yeah. Because I think their story -- there are, one, tens of thousands of those stories and one of mine. So I think just from a quantitative place they're more powerful and more impactful and more important, I think qualitatively. Like my story had a lot of media attention, but again, I had a test result in hours. I took care of probably 30 to 40 patients every day in West Africa, and there were probably 30 to 40 of some of the best medical providers at Bellevue Hospital on call to contribute to my care at any point. I had access to everything that I could possibly need, and the hundreds of patients that I saw, the tens of thousands of patients that we saw across West Africa, very often did not. And I know that that is truly the difference between life and death for a lot of folks. And again, as I've said over and over, I can be both grateful for the care and the resources that I received, but also feel guilty about the fact that people around the world aren't able to receive the same thing. And it's not like I or other people are asking for everyone to have access to the newest cutting-edge chemotherapeutic medication that just rolled off the shelves yesterday. A lot of the time it is, what can we do to get some of the most basic interventions to people that can have such a dramatic impact on people's ability to live or die? We've seen right now in Rwanda, the case fatality rate is about 22%. So about a quarter of people that are getting Marburg are dying. That's still really high. It's not any odds that I would want to take, but I think that's actually probably the lowest case fatality rate that's ever been measured. In one of the first outbreaks of Marburg in 1967, it was around the same spot. And subsequently there's been 18 outbreaks, a lot of them in places where resources are really limited and your mortality has been as high as up 88%. We are now like 60 years-ish later after discovering Marburg. The type of clinical care that they were able to provide in 1967 undoubtedly was not incredibly great in high-tech. But what we're seeing now is that around 60 years later, Rwanda is still able to provide that similar type of care. It doesn't have to be incredibly high-tech, it doesn't have to have all the bells and whistles. It needs some basics. And they were able to do that very well, and we've been able to see the impact. It's been a dramatic decline in the number of people that are dying. So I, and many others I think in a much better way, are basically trying to make everyone else aware and advocating for access to some of the most basic things that people need in outbreaks that people need at baseline just to stay healthy. And not only helps in those scenarios to keep people healthy, to stop outbreaks at their source, but in terms of health security globally it makes us all safer. 

The fact that I would presume -- I know your readers know about Marburg because you've written about it -- but most people have no idea. They don't know that it's going on, and that's great. They can go about the holidays, the election season, and not have to worry about this other thing happening in another place and whether it will impact them, infect them. 

The downside of that is that people won't realize how successful and how great this was and how important it was that the U.S. as a country and the international community over the past three decades since the Rwandan genocide has invested in all of the support structures in building up a health system, doing all these things around training and preparedness that have helped make Rwanda into a health system stand-out in the region and helped it lead its own response to this outbreak.

It didn't need us, it didn't need people like me. They could do it by themselves with the right support, and their success keeps us all safer. It also means that people are not as aware of it as they otherwise would have been had they not been so successful.

Faust: You just answered most of my second to last question, which is that there's probably nobody better positioned to say why the response to Marburg in Rwanda has gone as well as it has than you. Can you just say a little bit more about how the physicians and public health officials on the ground in Rwanda have been able to be so successful in controlling this outbreak?

Spencer: Yeah. I've been lucky in that I know a lot of people working on the frontline of the outbreak, and I've worked a lot in the region. In Rwanda, but also in DR Congo and in neighboring Burundi. So I know a lot about what capacity exists and what happens when you don't have that capacity. 

But the ability to respond to an outbreak, to do it well, does not start the moment that a case is found and an outbreak is declared, it starts well in advance. And so we know that over the past decade plus, Rwanda has been building up a very strong emergency medicine cohort of providers, nurses, doctors, working with tertiary hospitals to strengthen their capacity. You and I know a lot of folks that have either worked there, or I've trained there and helped build up an emergency medicine residency, for example. I mean, it's that type of health system strengthening that happens not just at the emergency medicine level, not just at one hospital, but at different specialty levels at different hospitals around the country and not just the capital, that provide those really strong bones for how you're going to do a response. It involves having interactions with international folks and experts, of which Rwanda does very, very well, but also has its own kind of homegrown internal resources for training epidemiologists and for doing data monitoring. 

We saw over the past couple years during COVID that Rwanda was really out on the front in terms of how it was able to manage the COVID pandemic. They were excellent at getting people vaccinated. They've been thinking about novel ways to do things around assistance throughout the country even before COVID. 

So you have all these things that went into what happened before the first case of Marburg was even encountered or described. And then once that happened, there was a span of a couple weeks between what appears to be the first case and the actual identification of the outbreak, which sounds like a long time, but historically is actually really, really short. The first Ebola case that caused the 2014 to 2016 outbreak probably occurred somewhere around December of 2013, but wasn't identified for months later. So this is pretty normal in these outbreaks in Rwanda; they have great diagnostic capacity. 

A lot of this built up over the past couple years in responding to COVID, using some of the same machines that we use to diagnose COVID, and PCR can be used for Marburg and other viruses. So you had a lot of the resources already in place. And then once this outbreak was identified, the Rwandan Ministry of Health, along with international support, was able to quickly ramp up testing, contact tracing, and reached out to groups like the nonprofit Saban Institute in DC to say, "Hey, I know that you have a vaccine candidate in phase two trials now. We would love if you could find a way to get some of that in-country." 

And eight days later, in what is truly an unprecedented timeframe for global health response, you had 700 doses of this investigational vaccine in-country being injected into the arms of frontline healthcare workers. A few days after that, you had a thousand doses coming, and now we know there's another thousand doses coming in addition to monoclonal antibodies and other investigational treatments. 

There are hiccups, there are things that didn't go right. There are issues around early transparency and communication. These outbreaks are really, really, really difficult to manage and they take a lot of time. But on the whole, I've been really impressed with how well the Rwandan Ministry of Health has handled this, has thought about ethical questions, and has done everything it can to keep particularly the healthcare providers safe, while also reassuring the rest of the world that they have this under control.

Faust: Thank you for that update. My last question for you is, you have occasionally said to me, "Oh, sorry, I had a little lapse there. That's Ebola brain." And I want to know, is Ebola brain a thing or are you just now in your forties, Craig?

Spencer: Both, I guess. I will blame the former for the latter, but if I'm doing that in 40 years, well then I'm lucky that I'm still alive. Look, we know that just like for COVID -- I think anyone that has followed your newsletters and your reporting and things you've written about knows that there's a thing called long COVID and that it exists and that a subset of people who get COVID can have either mild long-term or maybe severely debilitating long-term symptoms. And it's not all people, but it's some people.

With Ebola, we know that a lot of people, a lot of survivors continue to have long-term symptoms, whether it is around mental health, around depression, or around physical health. And it may be continued fatigue, weakness, bone pain, et cetera. We've heard a lot about brain fog over the past couple years with COVID. This undoubtedly exists not only for Ebola, but for other infectious diseases that cause long-term sequela. 

For me, the one thing that I think I've noticed most durably over the past decade is not a change in my memory or my ability to practice as a provider or public health person, but something even smaller and more granular than that, which is ability to remember names, even for folks and for people that I've had deep contacts with in the past. That's really the only thing that I've noticed. So if I'm using it as an excuse for other things, maybe call me on it. But if despite being a good friend of mine the next time I see you I look in your face and say, "Who are you?" Well then maybe slap me and set me straight.

But I think that's really the only thing. But again, in that case, I'm quite lucky compared to a lot of other people in that I got out of the hospital in November of 2014. So November 11th, 2014, less than a year later, I committed myself to and ultimately did run the New York City Marathon as kind of a way to both be an overachieving emergency room doctor addicted to adrenaline and other high endurance sports, but that was just kind of a way for me to try to put myself back on a mental health and physical health path. 

But I recognized that I was in a place at that time where that kind of luxury was not necessarily available to all of the other survivors.

Faust: Craig, thank you so much for sharing your advocacy and your story and for being alive and highlighting all the good work that is going on in this space. Also, congratulations on the 10 year anniversary of leaving Bellevue Hospital.

Spencer: Thanks, Jeremy.

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Inside Medicine Podcast
Merging what I'm seeing in the ER with rigorous deep-dives on the very latest medical and public health data. I want you to know what really matters.