Project Theia

Jen Will, MD, and Katie Duncan, MD, speak with Gary Wörtz, MD, to discuss the inspiration behind Project Theia-a nonprofit organization that provides free medical and surgical care to underserved communities within the scope of oculoplastic, reconstructive, orbital, and facial surgery.

Gary Wörtz, MD: “We arrived in Kumasi to see 50-plus patients that he had already pre-screened. We operated on some. We gave advice to many. We were unable to help them all. Just being there for a few hours in the clinic, we understood the breadth of the problem and the limitations to what we can accomplish. Most patients traveled 4-plus hours to get to us. Most patients had their visual impairment for at least years. The determination of most of these patients and parents was very palpable. We were their only option for some sort of solution.”

That passage is an excerpt from a blog post featured on the website of a nonprofit organization called Project Theia. Founded by oculoplastic surgeons Drs. Jen Will and Katie Duncan, Project Theia strives to provide free medical and surgical care to underserved communities within the scope of oculoplastic, reconstructive, orbital and facial surgery. As they describe, the eyelids, lacrimal system, and the orbit play an integral part in maintaining proper vision. Its function and aesthetics are crucial to patients’ quality of life, particularly in the regions that Project Theia currently serves.

In this episode, I touch base with Drs. Will and Duncan to hear about the inspiration behind Project Theia, the type of patients they are treating and surgeries they are performing, and their hopes and dreams for the years to come. Here we go.

Speaker 2: Ophthalmology off the Grid is an independent podcast supported with advertising by Alcon.

Gary: This Dr. Gary Wörtz with another episode of Ophthalmology off the Grid, and I am so excited to talk today to Drs. Jen Will and Katie Duncan. Jen is an Assistant Professor of Ophthalmology at Pittsburgh in oculoplastics, and Katie Duncan is one of her recently graduated fellows. And I actually have the pleasure of having both of them on the phone today to talk about a project that is just fantastic.

The project is called Project Theia, and it is just ... well, they're going to do a better job explaining it than I will, but when I heard about it, I thought of this as sort of like Operation Smile with an oculoplastics bent to it. And not only restoring patients who have disfigurement from an aesthetics standpoint but also restoring the vision for patients who potentially have exposure issues. So, what Jen and Katie are doing are finding patients in underdeveloped areas and partnering with other organizations and other surgeons to not only go in and help these disadvantaged children and women who maybe are one surgery away from having a normal life, but they're also teaching.

I met Jen actually recently at the American Academy of Ophthalmology meeting down in New Orleans. When she was telling me about what she had done and what she and Katie are doing together, I just had to have them both on the podcast to talk more about it. So, with that being said, that little intro, Jen and Katie thank you so much for spending some time this evening to unpack any of the backstory about how this came about and also talking more about your vision, and maybe even getting other people ... giving them some information on how they can participate, if not in person, but perhaps even just financially through donating to your charitable organization.

So, Jen and Katie, thank you again so much for coming on tonight.

Jenny Will, MD: Thank you, Gary, for having us and allowing us to talk about Project Theia, our passion, and like you said, to help patients who have both disfigurement and vision loss as a result of that disfigurement, so thank you for having us.

Gary: Yeah, so Jen, I'll just start with you. I assume when Katie was your fellow you had some conversations about maybe some shared passions in this area. We've talked about this just a little bit, so I kind of know a little bit, but will you unpack a little bit and tell us a little bit about how those conversations started and when you reached a point where you said, "You know what? There's such an unmet need here, first of all. And then second of all, we have to be the ones to do this." How'd that start?

Jenny: Okay, so both Katie and I had had experiences enjoying international medicine previously in our years in our medical career. We talked about how there are different organizations that help cure preventable blindness related to cataracts or corneal-related diseases, and people are out there with organizations that try to solve that problem globally. And then there are also organizations that are out there helping children and adults with facial disfigurement related to cleft palate or cleft lip or organizations that help patients with trauma-related injuries and burn related injuries to really change their life from the trauma that they experienced and allow them then to regain their confidence, go out there, and be sort of presentable and realize their potential.

We thought that what we do in oculoplastics sort of is that crossroad between those two things, where patients, obviously in children born with congenital ptosis where they have a droopy eyelid, can look aesthetically different for someone in some of these cultures, but they can also lose vision as a result of that. So, we looked into whether there may be organizations out there that do sort of what we do, and there weren't really any. So we decided to start our own nonprofit organization focused on solving the surgical problems that cause patients to lose vision as a result of congenital problems or injury related scarring around the eyelids or eye socket or tear duct issues. So that's sort of how we started.

Gary: Katie, let me switch over to you. You're a fellow, and fellowship is hard enough on its own. I'm sure that Jen kept you very busy. How was it that you said, "Okay, I've got enough time and capacity in my world to add this charitable project?" It had to be a passion project. On its surface, this does not sound like something that you would do because you had so much extra free time. This had to be something that you were really passionate about. Walk me through that. When did you just decide, okay, I'm going to find the time to make this a priority?

Katie: Yeah, so it's definitely a passion project, and I think it's a passion project for both Jen and I. We're both busy. Even though I'm a fellow, she worked super hard too, and I think we really bonded over how much international outreach has meant to both of us in our careers. We talked a lot about how going out there and helping those who may not have access to this kind of care kind of is the core of what we all went into medicine for, you know, to really make a difference in somebody's life. Being able to do that sort of reinvigorates you and reminds you of why you went into the field you did. I think everybody's busy, but it's actually doing things like this that actually are most exciting to me and to Jen and make everything worth it, all the hard work worth it. So, that's why we wanted to do this.

Gary: Talk to me about your first trip, and, maybe Jen, you could answer this. How many trips have you been on so far? Just quickly so I have a perspective of ... I know it's a relatively new organization. How many trips have y'all taken?

Jenny: We've gone on three trips, to St. Lucia, Ghana, and India. The St. Lucia trip was really just to connect with the organization down there. The Ghana and India trips, we were there both for over a week, where we actually met with the surgeons there, did surgeries, saw patients, and then provided education as well.

Gary: Walk me through an ideal patient. I'm sure it's if someone has already lost vision, sure you can help them aesthetically, but maybe it doesn't have as much of an impact. Who is your ideal patient that you're looking to help in Project Theia?

Jenny: When we were in Ghana, it's just like when you first go into medicine and you meet the patients and they make an impact in your life, and so some of the ideal patients that really kind of fit into our mission. We had a couple of kids that we saw who had congenital ptosis, whether unilateral or bilateral, and they were significant enough that they were developing amblyopia as a result. So for us to go in and be able to do the surgery and lift their eyelids up and watch in the postoperative period how their entire behavior is different as a result of seeing more, that's what we're there for and that's the impact that we're hoping to do with Project Theia.

We had a patient that was this woman who was a teacher, she was the sole provider for both her kids and her younger siblings; she was in a bad car accident where she lost her eye. She had a fairly complex brow and eyelid laceration that no one knew how to repair, so they just let that settle by secondary intention, and she essentially couldn't wear a prosthesis as a result of the upper eyelid, you know…

Gary: Granulating, right.

Jenny: ... the conjunctival surface and not having a fornix. So she felt like a monster as a result of not having an eye, not being able to wear prosthesis, having this very unforeseen scar across her forehead. She had sought care all over Ghana and just couldn't find someone to do the surgery that was needed. We were able to do a buccal mucosa graft and create a fornix for her. We constructed her upper lid and repositioned her brow, and then we were able to provide a prosthesis that was donated by our ocularist in Pittsburgh. While we were there, she took off the patch on her postoperative day and she was crying the tears of joy in terms of just knowing how different she already looked. We [hadn’t] even [provided] her with a prosthesis at that time yet.

Gary: Man, those stories. It's amazing, perhaps, how underappreciated this need in the world is. It's easy as a cataract surgeon to look out into the world and say, "Okay, number-one cause of preventable blindness is cataracts. I'm going to go be a cataract hero and knock out a bunch of cataracts in a weeklong mission trip." And you know, that's a lot of fun and it's great to do that, but in many ways, the cataract patients, they've probably already lived, in many cases, a good life. We're not talking about peds here, you know, here we're talking about generally the elderly.

What you're doing is you are perhaps really changing the course of not just one person's life, but in some ways children's, so they've got a full productive life ahead of them. And in other ways, a lot of these women are the primary caregivers as you mentioned, for not just for themselves but their entire extended family, and if they're not able to get a job or maintain a job or feel confident enough to go out and better themselves, it's not just them that suffers. Even if it were just them that suffered, that's horrible in and of itself, but there's a lot of downstream effects of that. It kind of shocks me just as we're talking here that there is not another organization out there that is looking into this.

Does the problem just seem overwhelming sometimes? Maybe Katie you can speak to that. I'm sure when you go to these places, it has to feel a little overwhelming that there is so much need. How do you handle that?

Katie: Yeah, it is a difficult situation because I think one thing that sets oculoplastics apart from cataracts is that every patient is going to come in with a different problem. You can't approach every sort of trauma case or lid scarring or every ptosis even the same way. There are some cases that are actually so complex that we do need things like general anesthesia or imaging that's not available, and so it is tough because there are a lot of people we can help who don't have access to some of the services we could provide, but then there have definitely been cases where we just aren't able to help them. And that's a tough thing because your goal is obviously to make a difference for people, but at times there are things that are just beyond what we can do with the resources at the place we're visiting. We're just trying to help as many people as possible.

I think one big thing has been making a lot of connections and finding out what each site we're visiting really needs and hopefully introducing them to people who can provide some of those resources and just doing everything we can with those limited resources.

Gary: Yeah, and one thing we talked about offline earlier was there's sort of a whole new level of innovation that you all are trying to take on with regard to providing creative solutions in places that don't have those resources. Jen, can you walk us through that a little bit? Tell us about maybe some of the ideas that you all are thinking of or ways you can do more with less in some of these underdeveloped countries?

Jenny: I think we have some short-term ideas and some long-term ideas. They expand how we can deliver care and also how we communicate with the local physicians and how those physicians can communicate with their patients. You know, we all have cell phones, and there are so many software applications out there that allow us to be closer in terms of how we communicate. So when we see these patients and leave them for postoperative care, the local physicians can take an image for us and they can send it to us through various different messaging platforms that then allow us to be able to communicate with the physicians there and make sure the postoperative care is in the standard in which we're used to.

[We are] able to use this platform for educational purposes, in which we're sharing ideas, we're sharing more information, new surgical techniques, and different things for them as well. And because I work in a university and we have access to various biomedical engineers and business students and such, we are also in the process of developing material that can support a wound, in its initial time of injury, to allow for less tissue damage and maybe perhaps make the complex surgeries that we do to restore scarring and function of the eyelids be less complex.

Gary: Sort of a bridge to…

Jenny: Yeah, sort of a bridge, and so this is actually a material that is patent-pending, currently. Katie and I are on this team where we're working with the biomedical engineers and trying to come up with this material that can be a structural support in the time of injury but then also deliver drugs that then can reduce the collateral damage at the time of injury. So, those are the things we think of that perhaps can be useful in places like Ghana or India, where they may not have access to some specialists like us right way. But this material as a wound structure support may be helpful.

I think we have four or five different ideas that every time we go there it just makes you sort of think about how can we improve the way the care is delivered, how can we provide simple solutions that can help with problems that they may not have access to. We're in the early stages of these ideas, but we hope to at least take some of them into fruition so that they can be helpful to places that don't have access to some specialists.

Gary: That's fantastic. I've taken some design thinking and innovation courses, and finding unmet needs, that's the first step in innovation. It's not having that great idea. It's actually finding an unmet need, and when you go on a trip like this unmet needs abound, and so it's probably very stimulating in terms of innovation because you're seeing all of these unmet needs. So that's fantastic.

Tell me about the name, Project Theia. Who came up with the name?

Katie: I think we were just brainstorming really and were thinking of all different types of options, but Theia is actually the Greek goddess of light and vision. I don't know which one of us actually found that, but we both liked it a lot, and one of our colleagues in Pittsburgh helped design a logo that we felt like fit really well with our mission and the name Theia. So, we kept it, and that's how it started as Project Theia.

Gary: That's awesome. Tell me about the future. What are your hopes and dreams for Project Theia? Is it that you go on a mission trip, a couple trips, a year and are able to incrementally sort of help the people that you see and teach, or do you have aspirations that you are able to spin this out for multiple surgeons taking on these projects and scaling? Where do you think the future is for Project Theia?

Jenny: Every time we talk about Project Theia to our colleagues, whether they're just general plastic surgeons or oculoplastic surgeons, everyone is very excited about coming on one of our trips with us, and so we're actually collecting a list of surgeons that may go on these trips, besides Katie and I. We're hoping to take at least two trips a year because we want to be able to support the local clinics that we have developed collaboration with, and once the word gets out that we're there and doing some of the surgeries, then the patients come, and so we want to be able to go back and do some of the surgeries.

We are hoping to establish programs that allow these clinics to provide surgeries when we're not there. So in Ghana, we're in the process of developing a pediatric oculoplastics program for them where we're trying to find the resources for proper anesthesia, proper monitoring during anesthesia so that these kids can be safely put under general anesthesia and then be able to undergo some of the surgeries that we would do. We're hoping to also then educate the Ophthalmologists that are providing care there with just the principles and knowledge of how to do some of these congenital ptosis or simpler procedures and making sure that they can do these things when we're not there. I think those are some of our short-term goals of being able to establish programs for the places that we've already gone to and then keep it going.

I think some of our long-term hopes and dreams are to be able to come up with the innovations that then can help on a different level. Surgeries are always going to be surgeries, but if we can reduce the need for some complex surgeries, provide solutions for them where they can have better communication platforms with their patients and educate them, and different things in helping them with how they deliver their health care to their patients, then I think that we've achieved more than what we're hoping to do.

Gary: What does it cost, just nuts and bolts, to take a trip? Is there a general cost that you have a number for or maybe a cost per surgery? These things are not inexpensive to fund, so any ideas or thoughts on that?

Jenny: Right, so every time we take a trip, we do take support staff with us, nurses, and we take donations of supplies from industries and from health care systems, but I would say that every time we go on these trips, it's about $20,000 to $25,000 just to be able to provide a week's worth of surgeries in terms of all our sutures and instruments that we take, and we're trying to get an anesthesia machine, and all the monitoring for the program that we're starting. We create a budget, but that's roughly how much it costs to keep it going.

Some of the clinics that are in these locations, what they do is ... adult cataracts surgeries are obviously paid by patients who can pay in these countries … and what they do is they take the funds that they make from doing adult cataract surgery and then they put it back towards developing these pediatric programs then that can provide some “free” surgeries for these kids. Because a lot of these countries don't have government support in terms of insurances and the compulsory system that's set up, so they have to make themselves sustainable. They take what can make them money, adult cataract surgeries, and they take those funds that are generated from there and then essentially put it back to serve the community that can't pay for some of this health care.

Gary: Right, but you all have a website and, correct me if I'm wrong, but you're a 501c3 charitable organization. So, I've actually been on your website. I actually already donated to Project Theia. I love what you guys are doing, and it's very easy to donate. You basically just go on there, you click Take Action, it's ProjectTheia.org. You click on Take Action, and you click on Make A Donation, and it's really simple.

I love what you guys are doing. I love the heart and the why behind it, and these are the kind things that, as you mentioned at the beginning, it does remind us about why we all went into this. It wasn't just to drive through suburbs to our office and surgery centers to take care of those who have needs and are of means and drive back home. This is something that I think we all have a responsibility in some way to do. And whether that's actually going and doing the surgery and setting up organizations like you all have done or simply supporting these kind of organizations, I think we all have a responsibility to give back, and this is the holiday season, it's all about giving.

I really just want to challenge at least everyone who's listening to this think about sponsoring Project Theia. It's an amazing organization as you can all hear from what they're describing. This is an organization that is in its infancy and is already changing lives, and as they go about their business and take care of more people and train more surgeons, this is something that is going to have a domino effect for a long time, and the ripples are just going to keep getting larger.

So, with that being said, any final words that you guys would like to say about Project Theia, about other ways people can either contact you, or get involved with what's going on?

Jenny: Well, I think on our website just how you mentioned, Gary, we do have the Take Action button where people can easily donate through that to support us in our missions. We're also on social media, if I can make this shameless plug for our Facebook page…

Gary: Please, please do.

J. Will, MD: ... which is just Project Theia, and we're also on Instagram as Project_Theia, and people can follow us on Instagram when we're on our trips in terms of the patients that we meet and just some of the stories that are behind the pictures that we take of the surgeries that we meet, and they just get a sense of what is it like when we're in one of these locations and doing what we do. If anyone wants to join us on one of the trips, we can be reached through our email that is also on our website but it's also ProTheia2017@gmail.com.

Gary: Excellent. Katie, any final thoughts?

Katie: Just echoing everything Jen just said, but also support doesn't always have to be financial, so even just spreading the word about Project Theia is great. We've gained so much by just making connections through friends and friends of friends, so any connections or any support in terms of sharing our message is also greatly appreciated.

Gary: Excellent. I'm going to leave us with a quote from Ralph Waldo Emerson that is actually on the front of your website. It's one that is near and dear to my heart as well. It says, "Do not go where the path may lead; go instead where there is no path and leave a trail." Katie and Jen, I just really appreciate what you guys are doing. I wish you nothing but the best, and, if there's any ways that we can participate in the future or follow your story, we'd love to have you back sometime. Thank you so much!

Jenny: Thank you, Gary, for having us on and helping us spread the message.

Gary: As busy as we are and as demanding as daily practice can be, it is sometimes difficult to remember to look at the bigger picture, at the world outside our office walls. However, we all know that access to ophthalmic care and health care in general varies greatly around the world.

Fortunately, we can all play a part. Whether by founding a nonprofit, attending a mission trip, offering financial support, or simply helping to spread the word, we can all contribute to the efforts to combat global health issues. I thank Drs. Will and Duncan for their outstanding dedication to Project Theia and for taking the time to speak with us today. To learn more and see how you can help, visit projecttheia.org.

And with that, this has been Dr. Gary Wörtz with another episode of Ophthalmology off the Grid. Thanks for listening.

Speaker 2: Ophthalmology off the Grid is an independent podcast supported with advertising by Alcon.