Beyond the Walls of ORs and Borders of Nations
Krzywonos: I'm Scott Krzywonos.
Jaraha: I'm Ranna Jaraha.
Krzywonos: This is New Retina Radio. This episode, we are looking beyond the walls of ORs, and the borders of nations. We're tackling international retina.
Jaraha: Right, so this is a story told in two parts. The first act gives us a broad scope of how international retina works, while the second act focuses more acutely on one specific doctor's experience.
Krzywonos: And we're starting with the first act.
Jaraha: As one does.
D’Amico: Hello, I'm Donald D'Amico. I'm the professor and Chairman of Ophthalmology at Weill Cornell Medical College and Chief of Ophthalmology at the New York Presbyterian Hospital in New York.
Krzywonos: Don claims that international medical work wasn't really his thing.
D’Amico: I have to confess that I have never really been, despite all my travel, a global health type of person.
Krzywonos: That changed as his career blossomed.
D’Amico: The impetus for me to become involved in what is more commonly thought of as global health really came rather late in my career.
Krzywonos: After Don was appointed Chairman of Ophthalmology at Weill Cornell, he learned that his department was bigger than he thought.
D’Amico: I learned that we maintain a clinic in Tanzania, in Mwanza, Tanzania, called Weill Bugando Medical Center.
Krzywonos: This was out of his wheelhouse.
D’Amico: I didn't know anything about Tanzania. Certainly nothing about Mwanza or Weill Bugando.
Krzywonos: But hey, Weill Cornell is Weill Cornell, Tanzanian campus or not.
D’Amico: And I said, "Well, that sounds like it's part of our department. Do we have a relationship to Tanzania or not?" At the time, I really didn't know what to expect, but I have a very good buddy in Geoff Tabin.
Krzywonos: That would be Geoff Tabin at the Moran Eye Institute in Utah, a co-founder of the Himalayan Cataract Project.
D’Amico: And he came to New York, we had dinner with a bunch of friends, and I said, "Geoff, would you come with me and take a look at this?"
Krzywonos: He's quite surprised at what he finds at Weill Buganda Medical Center.
D’Amico: What we found was actually more than astonishingly deficient in terms of ophthalmology. It was basically frightening. I mean, there was absolutely nothing modern about what they had.
Krzywonos: Here's a story of them going into the clinic.
D’Amico: The only tool that they had was a slit lamp that they didn't really use anymore. They did almost all of their diagnostics by holding up a pen light.
Krzywonos: Even cataract surgery was ineffective.
D’Amico: Because they had no ability to do any kind of measurements on patients' eyes with cataract, you typically would wind up with perhaps three diopters of spherical error, since they put the same IOL in every one. And four diopters of astigmatism.
Krzywonos: Don says that the doctors had their hearts in the right place, they just lacked resources.
D’Amico: The physicians were extremely well-hearted. They were all trying to do what they could. The experience, frankly, was transformative for me, because I saw so much low-hanging fruit.
Jaraha: Low-hanging fruit?
Krzywonos: Easy fixes.
D’Amico: 98 percent plus children with retinoblastoma in Tanzania die.
Krzywonos: And when retinoblastoma is identified, it's a de facto death warrant. Don illustrated this point.
D’Amico: Imagine being taken to a ward where there's twelve beds, and there's a bunch of little kids with retinoblastomas all bursting out of their heads, and you ask, "What is the treatment here for retinoblastoma?" And the answer is, "We give the child and the family several very good meals, and then we send them back to their villages to die."
Krzywonos: The gears in Don's head started turning rapidly.
D’Amico: So I'm immediately thinking, "Oh my gosh, can we send out somebody with flashlights to look for red reflexes in village kids." Instantly, I was drawn to it.
Krzywonos: There's got to be an easy way to fix this. Don goes back to his team at Weill Cornell.
D’Amico: So I got back to New York and I met with our faculty, at one of our very nice faculty meetings, and we're sitting around the conference table, and I look at the faculty, and I ask the question. I said, "How do you all feel about this? We've been there, we've seen, there's a lot we could do, but it will be an effort. We're a small department still. Is this part of our department or is it not? How do you feel?"
Krzywonos: The decision is unanimous.
D’Amico: To a person, they said, "No, no, no, we have to develop a relationship here. We have to try to do what we can." And so began a drumbeat of visits to Mwanza, at the beginning primarily educational. We would go, we would give lectures, we would see patients, typically diabetic patients or occasional other patients who they asked us to see.
Krzywonos: Some of the other patients included those who needed oculoplastics care. So, Weill Cornell sent down the appropriate personnel.
D’Amico: Our oculoplastics surgeon, Doctor Gary Lelli went, and the first thing he discovered is there were many burn patients and basic lid release procedures that allow the lids to function more normally again after they've been scarified and deformed. These were not really known to the physicians there, and so he rapidly began basic training in how to do lid release procedures.
Jaraha: Don's got the whole Weill Cornell team out there with him.
Krzywonos: Yep. And he had another retina doc too.
Chan: Hi, I'm Paul Chan, I'm a professor of ophthalmology and visual sciences at the Illinois Eye and Ear Infirmary of the University of Illinois in Chicago. I'm also Vice Chair for Global Ophthalmology Programs and the director of the Pediatric Retina and ROP Service.
Jaraha: What was his entry point to global retina?
Krzywonos: It was similar to Don's in that he never really aimed to end up in the international sphere.
Chan: With international work, really I just kind of fell into it.
Krzywonos: Paul was with Don when he first started working in the developing world.
Chan: In 2008, I was fortunate enough that when I was on faculty there that my chair at the time was Don D'Amico. We had a partnership with Tanzania, and I started to go out there, and then really trying to find some way of integrating my life in retina, and what I really love doing, from the clinical perspective, to the international arena.
Krzywonos: Paul visits Tanzania a few times from 2008 to 2011, and then begins formulating a plan for a very specific diseased state: retinopathy of prematurity.
Chan: I think it wasn't really until 2011 when I started really formulating the basis for what I do now, which is really international retinopathy of prematurity program development.
Jaraha: Wow, sounds like quite the undertaking.
Krzywonos: And he knows that he has to rely on his peers and mentors to get this done. There was one person in particular who helped him.
Chan: Tom Lee.
Krzywonos: That is, Tom Lee, the pediatric ophthalmologist of the Children's Hospital of Los Angeles. Tom was connecting with a group in Armenia.
Chan: The Armenian EyeCare Project.
Krzywonos: And they took a trip.
Chan: We went out to Yerevan, Armenia, where I started to see ROP for the first time.
Krzywonos: A little later, Paul goes to Vietnam with the Director of Orbis International.
Chan: A good friend of mine, Hunter Cherwek.
Krzywonos: Orbis International organizes a flying eye hospital that lands in the developing world and performs surgeries.
Chan: I went out to Vietnam to do a program assessment, and then it really opened my eyes to this emerging epidemic of ROP that we're seeing now.
Krzywonos: The trips to Armenia and Vietnam were the foundation of Paul’s current mission.
Chan: Integrating telemedicine, tele-education programs, and setting up programs with a lot of these NGO's and so forth for ROP.
Jaraha: That sounds like an ambitions strategy.
Krzywonos: I know, and the variables involved sometimes forged strategic changes in a new location.
Chan: In terms of the strategy that you have to take when dealing with different regions, or different countries, or different partners, it's really dependent on a lot of different things, it's multi-factual.
Jaraha: I imagine for a telemedicine program, you've got to have a decent telecommunications infrastructure before you can even think about getting a telemedicine program up and running.
Krzywonos: Yeah, for sure, and many of these variables are functions of economic conditions.
Chan: What's the economic infrastructure there? How developed are they already? We focus a lot of telemedicine and technology. Does the country have the infrastructure to have good reliable telemedicine programs? So you have to take your approach within the context of what's happening at that specific place.
Krzywonos: Surgical capacity and capability are variables here too.
Jaraha: Oh yeah, major ones I imagine as they can make or break the execution of a well-thought-out plan.
Chan: Some places have the capacity to vitrectomy some don't. Some have the capacity to do laser, versus just doing a Avastin or anti-VEGF treatment.
Krzywonos: Paul said formulating a plan is all about listening to those who know the environment best.
Chan: I think a big part of the international work that in terms of surviving or having an understanding of is just listening and paying attention, and learning from the environment before you necessarily make recommendations.
Krzywonos: Don agreed, and he pointed out that one of the most frustrating parts about trying to affect change is the pace at which change occurs.
Chan: Anything in the developing world is slow as I quickly realized. There's a million obstacles.
Krzywonos: Don described one incident that illustrates how many obstacles can exist simultaneously. In this story he talks about getting to the Mbola village in South Central Tanzania, which is serviced by the city of Tabora's airport.
Chan: Tabora's airport wasn't functioning at the time, so we landed in Mwanza, and we had to hire cars to get to Tabora and I was cheerfully told that it was a little more than a five-hour ride but, "don't worry Don, the first two hours you have tarmac."
Jaraha: And after tarmac?
Chan: It was sand. I mean, yeah, you have it all, you have the demands for out-of-the-blue payments, if not outright bribes at the airport. You have the questioning officials who despite your permits suddenly say you can't bring this in here, you have problems with maintaining sterility.
Krzywonos: Local cooperation is key.
Chan: You can't do anything in a country if you're not working with the health ministry. So, that's a rube-like mistake that fortunately we never made.
Krzywonos: And without cooperation?
Chan: If you think you're gonna do something independent, it will crash and burn. You need to work with a health ministry.
Krzywonos: Local cooperation doesn't just mean government cooperation.
Chan: You partner with non-profits. You partner with your international colleagues and I think that the most important thing is making sure that the local stakeholders are intimately involved because they're the ones who are gonna make this sustainable long-term.
Krzywonos: That's what Paul and Don are hoping for in the grand scheme of things. They want a sustainable, long-term solution.
Jaraha: Yeah, they're teaching people to fish rather than feeding them for a day.
Krzywonos: Mm-hmm. (affirmative)
Chan: You want to able to partner and create infrastructure in areas that may not have been able to provide appropriate healthcare to certain diseases.
Krzywonos: Don also mentioned the challenge of talent retention.
Chan: What's needed, I think is a way to avoid what inevitably happens, the doctors become so well trained that they're stolen by another wealthier country.
Jaraha: The brain drain.
Chan: You bring a doctor up to a certain level, and suddenly they have more value than they do if they stay in their country.
Krzywonos: Don said that they learned that building foundations for future success is different from just performing surgery during certain visits.
Chan: We recognized right away that we were not going to drop in out of the sky and start doing giant tear surgery, and all of the miracles of modern medicine.
Krzywonos: In the same way that one cannot just drop from the sky and fix everything, one cannot come in as a missionary seeking to preach the miracles of western medicine.
Chan: One could go down in flames in a million ways by insensitivity, by coming on too heavy handed, we know how to do this let us show you. You can't take that approach.
Krzywonos: That's just not the way things get done.
Chan: Your role is not to go in and tell people what to do. I think your role is to go in and partner and to problem solve together.
Jaraha: And that can't always be easy.
Krzywonos: Certainly not. Don said that you cannot insult anyone however if you wanna build a future. He offered an example and some motherly wisdom.
Chan: You know, you have an individual who's caring for a certain region and you may not approve of his technique of wound creation in the cornea so you live with it, you work with it, you congratulate him on his efforts. You find a way. My mother had a wonderful saying that I live by, 'Say it in the positive, find a way to build on what's there, and say it in the positive'
Krzywonos: Following these rules increases—but does not necessarily guarantee—success. Let's look at Paul’s relationship with an ROP program from Orbis International.
Chan: One of the things that I've been working on specifically is a project with Orbis International in Mongolia.
Jaraha: How long has that project been going on?
Krzywonos: Six years.
Chan: When we went to Mongolia for the first time in 2011, we were really the first people—at least in this children's hospital— to identify ROP.
Krzywonos: They helped local doctors acquire equipment.
Chan: Over the course of about five years we were able to acquire laser, able to acquire a camera with Orbis International.
Krzywonos: Funding came their way via the US government.
Chan: We were able to get USAID funding with the group and then they supported an ROP prevention program.
Krzywonos: The program has come a long way in the past six years.
Chan: Now they're doing telescreening, they're managing patients with anti-VEGF with laser. So children who never had access to care, who never had anyone screen them are now being screened and hopefully this will continue for many years to come.
Krzywonos: Paul keeps the expectations at a manageable level. Anything that is progress, is progress, and that's the point.
Chan: It's never gonna be perfect. But, if you can provide some way to prove access to care for patients, either children or adults, in my mind that's a win.
Jaraha: It sure is. Alright, well that marks the end of part one and we'll be back after this.
[STATIC FOR COMMERCIAL: INTRO]
Nothstein: New Retina Radio is an independent podcast supported with advertising by Alcon.
Greg Nothstein: New Retina Radio is an independent podcast supported with advertising by Alcon.
Mike Lee: This is Mike Lee, here at the bowling tournament during the final night of the Retina Fellows Forum here in Chicago. New Retina Radio is brought to you by Alcon. Stop by our booth at an upcoming meeting to see how Alcon is taking surgical retina into the future. Alright, let's get back to the program.
Krzywonos: Awesome! Thank you Mike.
Mike Lee: We’ll see.
[STATIC FOR COMMERCIAL: OUTRO]
Krzywonos: I'm Scott.
Jaraha: I'm Ranna.
Krzywonos: This is New Retina Radio. Ranna mentioned at the start of this episode on global retina that this episode would be divided into two parts.
Jaraha: So we're shifting topics. We're onto the next, and examining the experiences of one retina doctor at a specific point in time.
Dugel: Hi, my name is Pravin Dugel. I'm in a private practice in Phoenix, Arizona. I'm the managing partner of Retina consultants of Arizona. I'm also a clinical professor of Ophthalmology at the USC Roski Eye Institute in Los Angeles.
Jaraha: Pravin was born in Nepal.
Dugel: I was born in Kathmandu, and my parents were from there, my entire family's from there and we emigrated when I was four years old. So I lived in Nepal and really didn't know anything else until I was four years old.
Jaraha: It's his birth nation. He may not go back often, but ...
Dugel: I still feel a very strong cultural and spiritual connection to Nepal.
Jaraha: In the middle of April 2015, Pravin was gearing up for a weekend trip to LA.
Dugel: There was a trip that was planned that weekend for a day to celebrate Dr. Rohit Varma’s first anniversary of chairmanship at USC.
Jaraha: He went to bed and woke up early the next morning to a buzzing cellphone.
Dugel: My cellphone was full of texts from various friends that had said, "I'm so sorry to hear about Nepal, I'm so sorry to hear, I hope that everything is okay with your relatives." And I had no idea what they were talking about, until I turned the news on right then and there and saw on CNN that kind of devastation that had happened.
Gorani (CNN): A new video has emerged now, the moment the 7.8 magnitude quake hit Kathmandu.
Hawley (BBC News): Searching for survivors with bare hands, the immediate aftermath of an earthquake that's brought death and destruction to a large swath of Nepal.
Damon (CNN): We're still about a six-hour hike away from the epicenter of the earthquake, the actual epicenter of it but throughout this entire region the villages and towns up and down these sloping mountains have all been completely devastated.
Dugel: Immediately after that, I received an email from Dr. Sanduk Ruit.
Jaraha: That would be Sanduk Ruit, a co-founder of the Himalayan Cataract Project.
Dugel: And he called me up, and he said, "Pravin, this is the worst thing that I've ever seen in my life", and Sanduk doesn't exaggerate.
Krzywonos: His head must've been spinning.
Jaraha: Oh, it was. I mean his first instinct, is to help but how?
Dugel: In the beginning I didn't know what I was going to do and reality then sets in, the fact of it is all I am is a retina surgeon. I barely even know ophthalmology; I just know retina. I'm kind of a one trick pony. So, what would I possibly do even if I went there?
Jaraha: Pravin met with the team of USC Doctors that were in Los Angeles to celebrate Rohit Varma’s anniversary as USC chairman. And, after a quick meeting at the celebration, decided that USC needed to take action.
Dugel: They all put together this team from USC, this trauma team. And I was able to go there with them.
Jaraha: He got there after the trauma team arrived via Istanbul. It was a roundabout way to get to Kathmandu, and it took a while.
Dugel: About two-and-a-half days.
Jaraha: He arrived in Nepal, with someone from Retina consultants of Arizona.
Dugel: Perry Athinson, who is our media relations director in my office, but who also has extensive experience in this kind of work, having been the director of communications for Orbis.
Krzywonos: The same Orbis that we learned in the first half of the episode?
Jaraha: Yes, exactly. Well, Pravin and Perry go to see Sanduk Ruit who took them to the Tibet border where the epicenter was located. And that was another long journey.
Dugel: We drove for another eight-and-a-half hours.
Jaraha: When they arrived, Pravin was in a spot that he barely recognized.
Dugel: Going through Kathmandu, a city that I knew pretty well, where there was just utter devastation, there were barely buildings standing.
Krzywonos: What about the violence that accompanies conditions like this?
Jaraha: Apparently, completely absent.
Dugel: There was chaos. There was absolutely no violence. There was no looting, nothing like that, but just chaos in the sense of people trying to find their loved ones in the rubbles and things, but absolutely no looting, no violence. That made a very big impression on me.
Jaraha: Pravin and his team continued into the more mountainous regions, and the further they were from the destruction, the stranger things became.
Dugel: I looked around and there were no buildings. There was no destruction at all. It was beautiful. It was a beautiful day, and there were clouds in the sky—just a few—blue skies, and I thought, "This is just the most beautiful scene."
Krzywonos: Wow, what a dichotomy: destruction in the valley and beauty at the summit.
Jaraha: Oh, just wait, it gets more surreal.
Dugel: I looked around, and I realized that there was something really surreal happening, almost like a Fellini movie where there were absolutely no buildings anywhere, but the road, and these are dirt roads, but the only road was just lined by hundreds and hundreds of people on the sides wearing these beautifully bright clothes like a perverted parade.
Krzywonos: What was happening?
Jaraha: Pravin wasn't sure, but his driver had an explanation.
Dugel: The people on the streets, because they were totally devastated and lost everything, they could grab one thing. They would grab the best clothes they had, and that's all they had if they were alive. They would wear them because they had nothing else, and they had nowhere to go. That's why they were on the road, because that was the safest place to be, and perhaps to try and get some help.
Jaraha: The contrast still sticks with Pravin.
Dugel: This beautiful landscape, clear out to infinity just about, and this dirt road lined by hundreds of hundreds of people wearing these enormously bright clothes in this time of devastation. When you think of the context of it, it's utterly saddening.
Krzywonos: But what about the help he was there to provide? Where does that occur?
Jaraha: There was so much to do and so many places to do it.
Dugel: My involvement there was as much nonmedical as it was medical. By nonmedical, I mean carrying boxes of food, rice, and so on and so forth, hiking for hours, and getting to places where people needed food, usually food, medicine, so on and so forth.
Jaraha: There was still medicine to be performed.
Dugel: We did have a lot of eye injuries, and I took care of everything that I possibly could. I was obviously able to do that a lot better than a lot of other things that other people were able to do better.
Jaraha: Medical care occurred on the streets and in hospitals.
Dugel: We roamed the streets in Kathmandu at one time after the second earthquake trying to see what clinics needed. It would also be done in hospitals. During the second earthquake, I was operating in the Tilganga Eye Institute, which is a fabulous hospital, so the whole gamut.
Krzywonos: A second earthquake?
Brzezinski (MSNBC): It's the top of the hour, and we have breaking news overseas right now. There's been another earthquake in Nepal this morning, this one measuring 7.3 in magnitude.
Jaraha: It happened about two and a half weeks after the first one.
Dugel: That was probably the most terrifying experience of my life. I had just finished operating on the top floor of Tilganga, which was the fourth floor. On the second floor, Perry was interviewing Sanduk Ruit.
Krzywonos: That's the communications director for Pravin’s practice talking to Sanduk?
Jaraha: Mm-hmm. You got it. They're recording.
Dugel: He suddenly says, "Stop," and you can see the camera shaking, and you can see him shaking. He said, "Perry, move. Let's run now," and he ran, he bolted out.
Jaraha: Pravin said the second earthquake demoralized the entire nation.
Dugel: First earthquake, as physically devastating as it was, people were still trying to find their way around and trying to recover. When the second earthquake occurred, it was clear that they had really no control. And I felt that too, that anything could happen at any time, and we had absolutely no control. And we were somehow in this extraordinarily vulnerable position in a very, very vulnerable country.
Jaraha: That night, everyone slept outdoors so that, should another earthquake strike, they wouldn't die in a crumbling building.
Dugel: I also remember that night sleeping in a tent, but sleeping with a knife next to me.
Krzywonos: A knife?
Jaraha: Yeah, to cut his way out of a tent should another quake occur.
Dugel: That's the kind of terror that one lived with on a day to day basis after the second earthquake.
Jaraha: Then it was time to go home.
Dugel: I did have to get back home, carry on my practice, etc.
Jaraha: Right before leaving, he had a visitor at his tent.
Dugel: I still speak the language, I still speak Nepalese—not well, but enough to get around.
Jaraha: The visitor was a woman who said she would like to speak to him. Now, for this next part, Krzywonos and I decided that we're just going to let the tape roll and let Pravin take it from here. Just keep in mind the type of warmth and depth that a retina doctor like Pravin needed in this situation.
Dugel: There was a young lady that would like to talk with me, and I said, "Certainly. I said, "What would you like to talk about?" and she said that her son was also there, the daughter was also there, and she had lost her husband, and she would like to talk to me about that. I said, "Certainly." I sat down with her, she was a young lady, in a tent. Again, everything had been devastated. She wanted to tell me her story.
The first earthquake occurred during the middle of the day. Her husband had gone to work. She tried to call him but couldn't get through. They knew it was a big earthquake. She and her daughter, her daughter was, I believe, 13 years old at that time, she and her daughter walked to his work and found that his office had collapsed. They found him under a very large piece of wood that they could not dislodge.
She told me they tried for 13 hours, she and her daughter, to remove that piece of wood. He was still alive, because nobody else was there to help because there was such panic in the city. They could not remove that piece of wood. Then at night at about 2:00 or so, they finally got help. People came in, helped them remove that, and he was still alive, but there were no ambulances. They had to carry him to the hospital. And they carried him to the hospital, and he died.
She was telling me this crying, and she was saying, "What could we do? It was just me and my daughter. There was just two of us, and we just didn't have the strength to lift that."
I turned around and foolishly looked at the son who was probably about 20 years old, big, athletic looking guy. I said, "Oh, where were you?" and he didn't respond. He just looked down. I immediately knew I shouldn't have asked that question.
After some moments of silence that were quite painful, she turned to me and the mother said, "He was in school in the US," and I was shocked. I said, "He goes to school in the US?" and she said, "Yes." She said, "We're very poor, but we saved all our money to send him to school in Oklahoma." He was going to a university in Oklahoma and was a few months away from getting his engineering degree.
I was so impressed and saddened at the same time to think of this. Then the son said to me, he said—and his name is Sonam—so Sonam said to me, "I got the news just before my exams, and I tried my best to get back as soon as possible, but I just was too late. My father had already died."
I turned to him and I said, "Sonam, what are you going to do now? When are you going to go back to Oklahoma?" and he said, "Well, I'm not going back." I said, "Well, why not?" and he said, "Well, how can I possibly go back? I've got to support my mother and my sister." I said, "So, what are you going to be doing?" He said, "I'm going to get a job as a laborer."
I went home that day that evening and I thought this event is not just an event. It's a generational catastrophe. The number of lives that it's touched is not just in this particular time but in generations to come. Here's a young man who could've been an engineer who now in the next few months is going to be carrying cement under the hot sun, laboring as a manual laborer despite his education, despite being so close.
And that's going to be his lot in life because of this. It's a lost generation. That story more than anything else made an enormous impact on me and told me everything that I needed to know about the impact of this earthquake, and that was just one story. There are probably hundreds of thousands of stories just like that.
Krzywonos: That's all we've got for this episode. We'd like to thank Don D'Amico, Paul Chan, and Pravin Dugel for joining us. I'm Scott Krzywonos.
Jaraha: I'm Ranna Jaraha.
Krzywonos: See you next time.
Jaraha: Bye now.