Without Borders Podcast Dr. Benjamin Warf November 5, 2018

Dr. Gretchen Birbeck (WB Editor); Interviewee: Dr. Benjamin Warf (Boston Children’s Hospital and Harvard Medical School) 

WITHOUT BORDERS PODCAST TRANSCRIPT

Part I

Birbeck: Welcome to Neurology Without Borders. I’m very excited to speak with Dr. Benjamin Warf. He is a Professor of Neurosurgery at Harvard Medical School and Director of the Neonatal and Congenital Anomaly Neurosurgery unit there. But, of course, we’re speaking with him today about some of his international endeavors. When you see his large list of accomplishments, he’s one of the few people I know who’s done very substantial work internationally, and when you put it in the context of his broader career, it does look like a hobby, even though it’s pretty amazing. We will focus on his activities in Uganda today. So, welcome, Dr. Warf. We’re so happy to have you.

Warf: Oh, thanks. It’s good to be with you.

Birbeck: I’m going to dive right in. I have admired you and your work for many years. And, it’s just been delightful to meet you at some of the NIH meetings. Obviously, your career began before 2005, but your first publication related to work in Uganda was in 2005. And, I was very intrigued. That initial paper was extremely pragmatic. You were looking at comparing the outcomes for children with hydrocephalus who were shunted with a $35 device versus a $650 device, which, my own work tells me: can we do these surgeries or not? That difference is huge. Can you tell us a bit about what led to your work in Uganda and to that study in particular?

Warf: Well, sure. So, in 2000, I left my position, where I was the pediatric neurosurgeon at the University of Kentucky, which is my home state, and moved my wife and six children to Uganda to help start a hospital there with an organization, which is a Christian nonprofit, called Cure International. Cure builds and operates surgical specialty hospitals for children in developing countries. And, this was the second hospital that they had done. The original vision had been mostly for orthopedic-type hospitals, but I had managed to convince the founder and director of the organization at that time that a pediatric-neurosurgical hospital would be very beneficial.

So, anyway, we went to Uganda and started this hospital, and I wasn’t really sure what we were going to be doing there, but I knew there should be a fair amount of hydrocephalus. There was a shunt that I was using, had used for years, which is produced and used in North America. As you said, at the time, it cost about $650. I told my organization, I’m going to need probably a substantial number of shunts and this is what I would like to use. So, they bought 50 of them and they said, “That’s all we can afford. This is all you get.”

At the same time, I became aware of an organization called the International Federation for Hydrocephalus and Spina Bifida, which is based in Belgium, and they had just started a program of providing shunts to certain sites in developing countries for places that didn’t have shunts. And, the shunt they were providing was made in India—it’s called the Chhabra shunt—and at the time it cost $35. I think now it’s up to $40. [laughs]

So, I had basically, an unlimited supply of these very cheap shunts and I had 50 of the shunts I was used to that were used in North America. I said, Well, you know, kids are going to get one or the other eventually, so let’s just compare the two. We did a prospective, randomized trial, if you will, basically flipping a coin in the operating room to decide which shunt a child would get. We were very aggressive in our follow-up of these kids and we had very good 1-year follow-up. I mainly did that study for my own conscience, because I was afraid that this very cheap and cheap-looking shunt might not work very well and I wasn’t gonna feel right about putting shunts in patients that had an even higher failure rate than what we know they do anyway.

As it turns out, at the 1-year outcome, there was no difference in the rates of shunt malfunction or infection or mortality. From that point, I was just able to continue using that shunt with a good conscience, knowing that it was performing as well as one that cost twenty times as much.

Birbeck: Wow, that’s quite a story. So, your academic background led you to approach this problem in a different way than others might’ve approached it. I did not appreciate you moved there with family in tow. You were really immersed in everything. That’s fascinating.

Warf: Yeah, we lived there for about six-and-a-half years and I’m still heavily involved with what goes on there. Fortunately, I was very readily replaced by some very competent Ugandan neurosurgeons that we were able to get on board.

Birbeck: Were you training them during your time there or were they trained elsewhere?

Warf: Well, good question. So, our model has been that, when I was there, I hired Ugandan doctors out of their internship, and they would work with me for 2 or 3 years. If they were committed and seemed like a good candidate, we developed a very good relationship with the University of Cape Town and have sort of had a pipeline, if you will, of sending one person at a time down there, sponsoring their training, which is for five years, and after we’ve sponsored their training, they’re then sort of bonded to us for a period of time and they come back and work with us. So, now we have three neurosurgeons at our place in Uganda trained in this program. The first one spent a year with me in sort of a fellowship and then I hired him as my partner. When I finally left, he became the next medical director, Dr. John Mugamba.

Birbeck: Oh, lovely. Do you anticipate or hope for a local training program in Uganda? Or, do you think this situation is actually more ideal?

Warf: Well, there are several aspects to that answer, really. First of all, we’re only a pediatric neurosurgery hospital, so we couldn’t do general, full training for neurosurgeons, because we don’t do adult neurosurgery. There is a training program in East Africa. It’s under the auspices of the College of Surgeons of East, Central, and Southern Africa—and there are 2 sites in Nairobi, I think, and there’s a site in Kampala, in the capital city of Uganda, which does do some training in regard to general neurosurgery. We do a very high volume of pediatric neurosurgery and, specifically, children with hydrocephalus and spina bifida. We do training there of people that are already neurosurgeons in developing countries. It’s a program we have called the CURE Hydrocephalus and Spina Bifida program. We’ve now trained about 35 neurosurgeons in about 20 developing countries, many of them sub-Saharan Africa, but also Philippines, Vietnam, Bangladesh. It’s been a very active program since just after 2005. It’s a fellowship. It lasts about 3 months. It’s very intensive training, but it’s equipping neurosurgeons who are committed to the care of these children in their own countries.

Birbeck: Wow, that’s a fascinating South-South collaboration. We don’t hear enough about those. The press often goes to kind of what places like the US are doing. And, yet, it sounds like some phenomenal training, which could only happen at a site with the disease burden they have in Uganda is occurring kind of more globally. That’s amazing.

Warf: I would certainly agree that the south-south, as you say, part of it is somewhat unique. Perhaps even somewhat more unique and ironic is the south-north aspect that has developed because of the high volume of infants with hydrocephalus that we care for there. Because of the alternate technique that we developed there for treating hydrocephalus, we’ve had a dozen or more academic, pediatric neurosurgeons from North America go to Uganda to learn this technique and bring it back to the U.S., which is not the usual way that information and training flows.

Birbeck: Wow. That’s great to hear. So much to be learned. And, for surgeons, it’s all hands-on, so reading it doesn’t get you very far. They have to go and do it.

Warf: That’s correct.

Birbeck: Were you interested in hydrocephalus before you went to Uganda or did you—I’m just remembering my own work in Africa and just being stunned at how many kids had hydrocephalus just showing up to the regular ped’s clinic.

Warf: Yeah.

Birbeck: So, did you go with that interest or did you go there, find the burden, and say, Yeah, this is what needs to happen?

Warf: It’s really the latter. Before I moved to Uganda, frankly I was more interested in brain tumors, but when I got there, this was clearly the preponderance of disease that I was going to be treating and I was immediately confronted with the issue that I was putting shunts in babies and sending them out to rural areas or sometimes even surrounding countries: South Sudan, western Congo, etc. I knew those shunts were going to fail, so it was a real challenge and that’s really what riveted my attention.

Part II

Birbeck: On the issue kind of the medical education side and this fascinating situation you’re describing where, you know, we’re sending our trainees somewhere to learn something that really wouldn’t be easy to train them on in the U.S. Where do you see international medical education opportunities evolving over the coming years, because there’s just this huge interest among high-income-setting trainees that want to have the opportunity to work in a resource-limited setting? I don’t often see the exchange piece of it, so we often don’t bring students here. We more often send students to our foreign sites. Do you see that evolving in any way? I’m really fascinated by the work that you’re doing now that has clearly shown the value of our folks going to learn something in the field.

Warf: First of all, I’ll say there’s been a real change in the landscape since my family and I moved to east Africa in 2000. Prior to that time, there really wasn’t an interest in or, sort of, an academic niche called global surgery, much less global neurosurgery. There certainly was global health, but in the last, really, I would say, 10 or 15 years, even the last 10 years, there’s been such a huge increase in the level of interest by medical students and residents in wanting to have some involvement in global health and global surgery in particular. That’s really kind of a new thing.

If you go back to the 1990s, it’s just not something people in surgery were very much involved with, aside from, you know, some career medical missionary surgeons who spent their lives doing a little bit of everything in places that didn’t otherwise have access to care. So, now, we have this wave of interest and activity that I hope can be leveraged into something that will be helpful for people on both sides of the line. For instance, yes, we are able to send people to train in places with very high volumes and we train them more efficiently. We also have a great deal to learn about certain categories of disease that can be learned more efficiently with higher volumes of patients to do clinical investigation. That’s something that has linked us over the past few years and more and more people have been getting involved in this.

In terms of people coming from other countries to the U.S., it’s problematic in two ways. For instance, here at Boston Children’s Hospital, we have an international fellowship program where neurosurgeons come from other countries to Boston and they spend a few months with us. But, really, all they’re able to do is observe. They’re not licensed. They’re international medical graduates. They’re here for 3 or 4 months. They can’t have anything to do with patient care. They certainly can’t scrub in the operating room. As you said, surgery is a very hands-on enterprise, and there’s a limit to how much someone who’s a trained surgeon is going to get from standing in the corner of an operating room and just watching.

The other way that people come to the U.S. is to get their American medical license. Sometimes, they’ve been fully trained in their home country, and they go through another residency training program or fellowship in the U.S. And, oftentimes, especially if they have to be here for a few years, and their young children have spent 6 or 7 years in the States, it’s very difficult, just practically and economically, for them to go back. I have a very good example of that in one of our people that we had worked with in Uganda, who instead of going to Cape Town and getting a very high level of training, as our other folks have done, had a great opportunity to come to the States, do research, and get into a training program after he took his licensing exams and he spent 6 or 7 years in training. And, by now, he and his young family have been in the States for close to a decade. It’s very difficult for them to go back now. There’re are obstacles with either paradigm. I don’t know an easy answer to that, unfortunately.

Birbeck: Yeah, I’m familiar with that as well. If your children don’t even speak the language where you came from, how do you take them back there and expect them to adapt?

Warf: That’s right.

Birbeck: It’s a real challenge now. Absolutely. It’s interesting to think about young faculty coming here. Then, the flipside of that that I’m seeing more and more in neurology is young academic medical faculty, who are interested in global health and they’re trying to build careers in global health. You really did—you just dove in, lived there, and did the work. But, for those who are maintaining primarily academic appointments who want to work globally, one of the challenges I often see, particularly in younger faculty, is sort of external perspective that this is some hobby that they have, right? They have a real job and then they have this hobby. I find that’s a real impediment to people, having their interests being taken seriously on both sides, right…

Warf: Yeah, agreed.

Birbeck: …in the U.S. as well. Do you have any advice for those individuals? I’m a big believer in spending serious time in the field. Clearly, you are as well. Any advice on how those folks can make their interests clear and serious and really sell themselves as being global, whether it’s a neurosurgeon, neurologist, etc.?

Warf: Yeah, well, that’s a great question. I think one of the obvious keys to that is having a supportive department and a supportive chair who believes that mission, thinks it’s important, and sort of owns that as something that their department is going to invest in academically. If you just are asking for a couple weeks off and you’re going to go visit somewhere, and it’s not a more significant endeavor, and it’s not supported by your department, it sort of is a hobby. If it’s pursued in a way that’s supported as an academic, long-term commitment, and one pursues grant funding and one develops long-term relationships with another institution, and you’re increasing capacity there, perhaps bringing people back for visits and developing things in both directions, I think it can be very successful. But it really does require full-time commitment. So, when you’re in your day job, so to speak…[laughter]…at your own institution and doing your clinical practice your—what other people would call your research time—you know, is spent communicating with the other site, and writing grants, and writing papers, you really roll into your career not as something that is partitioned off as a separate thing, but it is really has to be part and parcel of your day job.

Birbeck: That is great advice. That is excellent advice. IN 2012—I should say, and I should have perhaps introduced you as being one of the Macarthur Genius grants awardees; you received that very prestigious award, and it’s an interesting award because it can happen for people at any stage of their career. I’ve seen some folks get it very young. Did that award give you the capacity to do something that you might not otherwise have been able to do? And, if so, what was it you were able to do with that?

Warf: [laughs] Well, of course, my wife had to admit that I was a genius, which was helpful at home. So, two things. One is, the award itself is a big honor, and people recognize that, whether you feel like you deserved it or not. It sort of can open doors in terms of people taking you seriously, getting a platform from which to speak. It just gives you a little extra gravitas, which can—which I’ve found somewhat helpful, quite frankly. Then, there is a cash award, and you can do anything you want with that. They describe it as a no-strings attached award. You don’t have to give account for it. And, what I chose to do was to set up an endowment here at Boston Children’s Hospital, and I put all the money in that endowment, which will survive in perpetuity, and what I do is I use the spinoff funds from that to support some of the global projects that I do. For instance, I have used the money to sponsor what we now, for the last three years, have had what’s called a global neurosurgery fellow through the Harvard program in Global Surgery and Social Change. Sometimes, there’s no funding for those folks. Their residency programs or their home institution don’t provide ongoing funding, so I dipped into that to produce the salary for one of our global fellows one year. I’ve used it for travel. I’ve used it for supporting various research projects. That has been really helpful, because I’ve been able to get some research and some teaching done that I wouldn’t have had support for otherwise.

Birbeck: Lovely. The gift that keeps giving once it’s an endowment.

Warf: Yeah.

Birbeck: That’s wonderful. Excellent. Well, when you look ahead, we can, you know, look back at some amazing accomplishments and the things you’ve built that, as you say, in perpetuity will be there. What do you hope, going forward, what are your own goals for your own work and the programs that you’ve built in Uganda?

Warf: Well, I really want to see them become progressively more independent. That includes, in regard to the clinical research and the training, they are independent from a clinical practice point-of-view. In fact, now, when I go back and visit, I rarely even operate because they literally don’t need me. I mean, these guys are really good and they are busy.

What they need more of is encouragement and mentorship. Another aspect of what we’re doing in Uganda is the research enterprise. We have, now, 3 active NIH grants with projects there and I’ve really learned the value of multi-institutional collaboration by bringing people in from other institutions that have other skills and resources that I certainly don’t to come together on some projects that can really make a difference, not just for the kids in east Africa, but that are relevant to children in other parts of the developing world and sometimes in developed countries as well.

What we’re in the process of doing now is setting up a little—it sounds bigger than it really is—research institute that’s folded into the NGO there through which we can do our funding and our budgeting and our IRB and other kinds of issues. We have a research director there now, Dr. Mbabazi, who is a Ugandan with her MD and MPH. So, we’re becoming more—or, they are, I should say, becoming less dependent on us and I think that’s where the future is going to be: is building capacity and allowing them to do what they’re perfectly capable doing. They just need a little help getting started.

Birbeck: So, the research infrastructure and autonomy.

Warf: Yeah, but, autonomy with collaboration. I think that’s really key. Collaborators that can bring funding, bring expertise, and work with people in a unique place where there’s a unique population to learn from and to help.

Birbeck: Well, I’m really looking forward to reading the work that comes out of your site in the years to come. I’m sure there’s going to be many incredible research papers published on that as well as the benefits that the care delivery has evolved in that setting, I’m sure, amazingly well. It has been wonderful to speak with you. Is there anything else that you’d like to share with our listeners?

Warf: I guess I would say at the end, it would be I’ve been very grateful for the opportunities I’ve had to be involved in this work. I’ve been very blessed in many ways to have been able to do this kind of work for the last, going on, 20 years now. I’m just very thankful.

Birbeck: Wow. Thank you for speaking with us today about your incredible work. Congratulations on all you’ve achieved, and, again, I’m looking forward to watching what you do in the future.

Warf: Well, thanks very much. It has been a pleasure.