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The Current Transcript for March 4, 2019

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Prologue

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VOICE: I was so scared, but I was saying to myself like this is the only option like just do it or die.

ANNA MARIA TREMONTI: She had to trust people she didn't know and if she got caught leaving her family and her country, the punishment would be severe. She's just one young woman, but she represents many growing up in gilded cages in places like Saudi Arabia or the Emirates, where sisters, daughters and mothers have only the freedoms the men will give them. And when they do get out, they do it through the kindness of strangers, an underground network of women like them who help them escape. In a moment, the CBC's Nahlah Ayed takes us into their world. And after that, meet Kian.

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VOICE: This is going to be nice. Like I can walk into a room and everyone just judges me for like me like what they meet right there.

AMT: At 17, Kian has already spent years on the emotional, medical and family journey involved in transitioning from female to male. And in that time, the number of young people seeking the same kind of help has jumped significantly. Five years ago, clinics saw a handful of teens. Now they see hundreds. In half an hour we're asking how the medical community is changing with them. And then, in a world where antibiotic resistant superbugs kill millions, we're going to bring you the story of Steffanie and Tom. They were on an excellent adventure, an exotic vacation. Tom got an infection. Steffanie stepped up to make sure he'd get help, but that involved three hospitals in three countries, seven near-death experiences and the unearthing of an old cure literally pulled from a swamp.

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VOICE: I wanted to leave no stone unturned, so that if he died, at least he died knowing that I had done whatever I could.

AMT: How one woman's dogged determination helped reintroduce bacterial fighters called phages and what those phages might one day do for someone you love. That's in an hour. I'm Anna Maria Tremonti. This is The Current.

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'An Arab Spring for women': The secret group helping young women flee oppression

Guests: Nahlah Ayed

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VOICE: My name is Rahaf Mohammed. I'm 18-years-old. I can't do anything because they have my passport and tomorrow they will force me to go back to Kuwait. Please help me. They will kill me.

AMT: You may remember that voice, that disturbing scene when a Saudi teenager named Rahaf Mohammed broadcast her plight to the world. Hold up in a hotel in Thailand in early January, on route to Australia, she warned she would be killed if she was forced back to Saudi Arabia. The 18-year-old begged the United Nations High Commissioner for Refugees to intervene, begged for help from anyone and her pleas struck a chord. After her video diaries went viral, the UNHCR did step in. Canada stepped up and today Rahaf Mohammed is building a new life in this country. But there was another group that played a crucial role, a secret network of volunteers who worked tirelessly to raise awareness online about her plight. Rahaf Mohammed is not the only Saudi woman they have helped. The Fifth Estate has gone behind the scenes with a group it's calling the Defectors, in a documentary now available online. Nahlah Ayed is a CBC foreign correspondent and a guest host of The Fifth Estate and she's here to tell us more. Hi Nahlah.

NAHLAH AYED: Good morning.

AMT: So this starts with restrictions on women in Saudi Arabia. Remind us how the male guardianship system works in Saudi Arabia.

NA: Well it's simply like this, every woman in Saudi Arabia has to have a legal guardian and if it's not your father then it's your husband or an uncle or a brother or even a son. And that guardian's permission is required for things like marriage, for travel, for getting a passport and it means that a woman essentially will always have a male in charge of their lives from cradle to grave. It's important to note that while this is actually law in Saudi Arabia, it's not in other Arab countries and other Gulf Arab countries, but in practice, due to family or cultural traditions, the result is often exactly the same. There's a sort of an informal guardianship system that puts sort of women's decisions as I said like marriage, in the hands of male relatives.

AMT: OK and so Rahaf Mohammed said her life was in danger if she was forced back to Saudi Arabia. That's a legitimate concern.

NA: Well yes because even though in places like Saudi Arabia women have made incredible strides in terms of trying to get to some state of equality, those are countries and certainly Saudi Arabia is one of them, where honour revolves around the behaviour of women and that can be a life and death situation. And there have been examples in the past where women have tried to escape and their lives or their you know their everyday existence has been threatened as a result. One example it's impossible to have a conversation with any woman who is contemplating or has escaped without the name Dina Ali Lasloom coming up. She's a Saudi citizen. She tried escaping back in April 2017. She tried, her route was through Manila, she wanted to get to Australia as Rahaf did and she was detained on the transit stop in Manila. Now the authorities took her passport and she made a video, just like Rahaf did. She said some of the same things. She said if my family come, they will kill me. If I go back to Saudi Arabia, I will be dead. Please help me. But before anyone could actually do something practical to help her, although people tried, she was tracked down by her men believed to be her uncles, who forcibly dragged her onto a plane and she's never been heard from since.

AMT: How long ago was that?

NA: That was in April 2017.

AMT: And there's another woman, Princess Latifa Mohammed Al Maktoum in Dubai, right?

NA: Yes exactly, she's a princess and she made a video and the reason we know her story, she made a video kind of preemptively before all of this happened and she planned this elaborate escape with the help of friends, got on a yacht was just short of the Indian coastline. She actually made it out with these friends and the boat was intercepted, the yacht was intercepted and she was forcibly taken back to the UAE. Again we don't know exactly what happened to her. There have been pictures of her that have been released by the government to prove she was alive, but beyond that there's no sense of what state she's being held in now. She's never seen in public.

AMT: And of course there's no online connection anymore.

NA: None.

AMT: So she's gone behind those walls. I said gilded cage, but they aren't and that some of them are privileged, the main privilege is freedom, but some of them are not.

NA: Exactly, I mean we spoke to people who came from ordinary working class families. So I mean yes there is that image that people from the Emirates or Saudi Arabia are well-to-do, but it's not always the case. And so it isn't about that, and often these women have told us that even if they had come from families that are privileged, that that was, they didn't mind giving that up to have the kind of freedom that you and I know.

AMT: How often are women seeking asylum sent back to Saudi Arabia or an Arab Emirate then, either in transit or from the asylum country?

NA: It's impossible to know. I mean no one is actually tracking these numbers and we barely know even how many people are claiming asylum at all who are women. Those numbers are just not tracked, but anecdotally, I mean we've just talked about two examples. We have heard from women we've interviewed that there are you know there's a significant number of them.

AMT: Now the people working behind the scenes, the volunteers you call the Defectors, who are they?

NA: Well they're mostly, as we said, women from Saudi Arabia and the Emirates who came together online because of the circumstances they live, the ones we just described, you know the repression and the unequal status. And because they feel that all of that should change. So some of them would actually describe themselves as feminists and activists and many would say that they're atheist or ex-Muslim. So that's sort of what brings them together. And they're always in touch. They're always 24/7 they're online discussing the challenges of their lives but also how to cope with these challenges. It is a closed group. It's a hidden group and it's invitation only. And it has a presence in Canada. And what they do all happens online everything's online. So they provide support they give advice they trade tips and I should say that more than half of this group have have now left their respective countries. They live in the West and they have asylum claims that are pending. But I should also say that this really speaks to the fact that there is nowhere else for these women to turn if they decide to embark on a dangerous escape. So they turn to each other for support and they take these things into their own hands. You know what would otherwise be a completely solitary an effort to try to leave your own country, dangerous escape, on your own. So this allows them to have the kind of support that you'd want if you are embarking on a trip like that when you're 18 or 20.

AMT: And so the the people who are in the group they really have to look out for their own security and the security of the people they're helping too so there's nobody infiltrating this group.

NA: Absolutely. And they are extremely protective as you might imagine of their network because they have worried about infiltrators in the past or spies. So in fact, not only do they not reveal where they're at and we've committed to not doing that, but they also, there are certain things they will not say online. They won't for example announce their exact day of departure someone's leaving just in case there is somebody on the on the group that they don't know or can't trust. Now again this speaks to the fact that there is nowhere else for them to turn and there's nowhere for anyone left in those countries. That is a danger. You know that they could be the fact that they are not only speaking about equality and wanting to fight laws that exist in these countries but they are also trying to help women leave those situations. Not only could that be hurtful you know from the Saudi perspective for example to families reputations but it could also be bad for the country's reputation. So you can imagine that. And we know how women activists have been treated in Saudi Arabia for example. So these are women who don't want their plight to be known publicly in their countries of origin.

AMT: There's also a man, a Saudi psychiatrist now living in Germany, he's involved. What's he doing?

NA: Yeah Dr. Taleb Al Abdulmohsen. He's a Saudi psychiatrist who claimed asylum himself in Germany in 2016. He'd been to study, but he had also been blogging and was threatened because of his atheist views. So he claimed asylum and when Dina Ali, the Saudi we mentioned earlier, was escaping, he did everything in his power to try to help. So he was tweeting at Amnesty International and UNHCR he contacted lawyers to try to find some way to save her. And and it didn't work. So he was deeply affected by that and vowed to do something. And his idea was to start a website. So he created this website wearesaudis.net and it is aimed at Saudis, but it is also been very useful to all sorts of other people. And he built it into kind of an encyclopedia of escape, an incredible amount of information. Here he is describing the site to us.

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VOICE 1: So this is telling you basically how to claim asylum in Canada.

VOICE 2: Yeah and these are basically the two ways for Saudi asylum seekers. This is only about the asylum process inside Canada.

VOICE 1: Inside Canada, OK so how are you getting information?

VOICE 2: I don't rely a lot on internet because you know what you read is different than the real experience. So I tried to gather all information from people who are already there in the asylum country.

AMT: How instrumental is he Nahlah for these women?

NA: Well every single woman we spoke to said they used his website because not only does he provide information about how to pack, what to bring with you, how to get a car, what to do at the airport, but also what to do when you arrive in those countries. So it's an indispensable source of information for these women.

AMT: And you mentioned Canada. Do a lot of these women want to come here?

NA: Well a large number in this group, it's partly why they came together in fact, is their interest in Canada. But I should say that although more than half of the people in this group have left, not many of them have actually managed to get to Canada and they've gone to other places.

AMT: And so what do you know about what the group did to help Rahaf Mohammed escape from Saudi Arabia and get to Canada?

NA: Well as you mentioned, the most important thing and the earliest thing they did was simply getting the word out, knowing that she was in trouble, the fact that they were watching her progress and knowing that she ran into trouble, they raised the alarm. You know they contacted media, human rights group, you name it and they also advised her to make that video in which she shows her face. You know to show the world that she's actually a real person who is in great danger. In other cases they've done everything from helped search for flights for women to just discuss the timing of a trip. How do you time your trip to ensure that you can get out in time and before your family can find out and catch you before you get on that plane. In one case which we'll look at again in a minute. One woman we interviewed from Saudi Arabia said that she was for example didn't know how to get to the airport. You know she's on her own and you can't travel on your own and who could she trust to actually physically drive her to the airport. So that, she got some advice on the group about that.

AMT: Well and even with Rahaf right, I mean she got to Thailand, we saw that she did have to get that far. Like how do you get your suitcase out of the house, like what id they, like those little details, is that what they help them with? Like how do you figure out, what do you say to the other people in the house where are you going?

NA: It's you really gain an appreciation of how difficult these journeys are when you talk to these women. Because every one of those details is not only problematic, but could lead to great problems. So the first thing and of course all of these countries are difficult but Saudi is the most difficult because of course of being hampered by the fact that you need a male with you essentially at all times. So if you look at that situation first thing is to get a passport. So that alone is a huge problem in Saudi Arabia have to get someone's permission to do that. So we've heard two stories of women who have had to steal their own passport either from a family safe or from their parents possession. Once you do that then you have to actually book the flights you have to save money to make sure that you have enough to get to wherever you're going and the trip to the airport is something that comes up a lot. Because essentially as I said you have to make sure you get to where you want to go get on that plane before anybody knows that you're doing it because very easily someone could come. A family member could follow you and ensure that you don't get on that plane. So every single step is fraught with danger. And then of course getting to the other countries some of these women have never traveled on their own. Many of them are well traveled, but they've never traveled on their own. Getting to these other places, knowing what to say and again ensuring that no one's following you, so every step is a problem.

AMT: Now we've got a clip that that kind of illustrates that. Let's listen to it and you can tell me what we're hearing.

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VOICE 1: I was scared to take an Uber or any driver there becuase sure he will ask like a girl going to the airport alone, what you want. So one of the group girls she said that there's a Saudi atheist, like in the same city you're in and he can help you. At the beginning like I was so scared.

VOICE 2: And you didn't know him, you'd never met this guy?

VOICE 1: Yeah, never. But I was saying to myself like this is the only option like just do it or die.

VOICE 3: We were very, very scared for her. It's just like it's very scary because you never know what happens because she wouldn't always contact us when she's at the airport.

NA: So that last voice was that of T. She's from the Emirates and she's describing what it was like to be part of this group watching over the previous woman J, as she was making her escape. So they stay up for days at a time sometimes, waiting to hear from their friends who are making the journey and often these women get rid of their phones, they get rid of their social media accounts, so there's no way for them to be contacted. So yeah.

AMT: R has her own story. How did she get out?

NA: R had a very interesting story. She actually decided a long time ago, like years ago that she wanted to leave, but she waited to finish her degree and then she essentially planned her trip in two weeks. Her biggest problem again was getting to the airport in time without people knowing that that's where she was going. So what she had done is go to the university. She told her mom she had an exam. So at 8:00a.m she was at the university and there's kind of a fingerprint system that proves that you are attending and it sends a message back to the families. It's a girl you know girl-only, women-only university. So the families can know that their daughter has made it to school. So she did that. She fingerprinted herself at the school and then went straight to the airport and so very, very dangerous, very difficult, very scary for her, but she did make it and now lives in Europe.

AMT: Did you witness anyone being helped in real time?

NA: Yeah and I should say that this group is dedicated to helping not just their own members, but every time they hear about a case, they get involved. They jump online and that's the minimum they do is they at least try to raise the profile of these women who are trying to, who are in trouble. So there was a case just recently a couple of weeks ago of Hind Albolooki. She's from the Emirates as well. She's a mother of four who wanted a divorce and who was threatened by members of her own family, her own father, her uncles, for wanting a divorce. So she escaped to North Macedonia and then claimed asylum and she was denied and she was told you're going to be deported. So she made a video begging not to be deported because she knew what that meant, that she could be in grave danger. So the group members raised the alarm and unprompted right, they're always watching online and they're trying to stay on top of all of this. So they did what they did for Rahaf. They tweeted to anybody who would listen. Human rights groups, to the media, to try to get the word out and have someone intervene to make sure that she's not deported back to the UAE. Now it didn't have quite the same effect, it wasn't as loud and viral as the situation with Rahaf, but it seemed to have worked because now she has been given a small reprieve in that she was able to relocate to Germany before she can decide what to do next.

AMT: So all of these women work online, do they ever get to meet it?

NA: It's a really good question, it's not often that it happens. They do form incredibly strong bonds as you can imagine because they are in such a small club and these are such dangerous trips and they are putting their trust, you know for planning the most dangerous trip of their lives and these women most of the time who they've never met, but they know they're like minded. They get to know each other really well and as I mentioned because they talk so constantly and about such intimate things and so important things, they really become close. Now we were there when J and R actually met for the very first time. Have a listen.

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[Sounds from the meeting of J and R for the first time]

NA: It was quite an emotional moment to watch them see each other in person. And you know when you ask these women, how would you describe what's going on here? What is this? They call it a revolution. It's kind of like an Arab Spring for women.

AMT: They sound young too.

NA: They're very young, 18, 20, 24.

AMT: And they take they take these great risks and they give everything up.

NA: Yeah and the way R put it is that for freedom, she'll sacrifice anything.

AMT: So talk to me a little bit more than you know, it's a side of these countries we don't get to see. We again, we see you know the very wealthy countries, families behind walls, nut what's going on behind there is just that they can't take it anymore.

NA: And that often comes up, especially when we talk about the Emirates ebcause I think a lot of Canadians and others would know Dubai, would know the Emirates and what it represents, a lot of wealth. It's an opulent place. It's beautiful, full of gorgeous malls and lots to do and bars and restaurants, it feels like a very modern place, where you'd expect women to be just like everybody else. But especially in the case of Emerati women, they do point out that they have as much difficulty sometimes as Saudi women do, and that it is a secret. It is not a well-known thing and people are blind to it when they go to a place like Dubai. So they, to them it's important to get the word out that it isn't just the Saudi women who suffer, but they Emeratis and others too.

AMT: And any idea how many women have arrived in Canada?

NA: We don't know. It's those statistics simply don't exist, but we know, we interviewed two. We know of more than that. So there are a few, but impossible to know how many.

AMT: And they are more interested when they get here into just fading into the woodwork. They don't want the attention.

NA: Listen the most important thing when they arrive is the fact that they are still at risk of deportation. If their asylum claim fails, they may still be deported back. So their energies are now directed entirely at that because they're not quite safe until they know for sure they have asylum and unlike Rahaf, it takes months, sometimes years to determine that.

AMT: And again all thanks to that group you call the Defectors.

NA: Yes exactly, yeah.

AMT: Nahlah Ayed, great story. Thanks for coming in.

NA: Thanks for having me.

AMT: Nahlah Ayed is a foreign correspondent for CBC News. She worked with the Fifth Estate on the documentary, The Defectors. You can watch it on the website cbc.ca/thefifth. Let us know what you think of what she's just been telling us. You can tweet us @TheCurrentCBC. Find us on Facebook or go to our website cbc.ca/thecurrent and click on the contact link. Stay with us, the news is next and then the number of young people looking to transition from one gender to another is on the rise across the country. We're going to hear from one family whose child chose to transition and from medical professionals about the science and humanity involved and how the medical profession is changing along with their patients. I'm Anna Maria Tremonti. This is The Current on CBC Radio One.

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Trans youth need help sooner rather than later, says pediatric nurse

Guests: Margaret Lawson, Cathy Maser

AMT: Hello. I'm Anna Maria Tremonti and you're listening to The Current.

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AMT: Still to come, their story reads like a medical thriller, but in the case of a Canadian scientist and her husband seeking an unorthodox cure, it is true and its outcome could mark a new beginning in the fight against antibiotic-resistant superbugs. They will join me in half an hour to talk about the science and promise of phage therapy. But first youth in transition. For years Kian Olsheski understood that his identity since birth as a girl made him uncomfortable. By 14, he had written to his parents and chosen the name Kian. He's not alone in wanting to transition. Clinics and hospitals across Canada report they're seeing a spike in the number of trans and non-binary youth. The B.C. Children's Hospital had 240 referrals last year compared to only 20 in 2013. Sick Kids Hospital in Toronto saw 100 patients five years ago, that number has since doubled. CBC Ottawa's senior digital producer Jennifer Beard visited the Olsheski family in Westmeath, Ontario, about an hour and a half from Ottawa and at 17, Kian has had a hysterectomy and what is known as top surgery and is currently waiting to have bottom surgery. But before he could do all of that, he had to explain to his parents who he is. We're going to hear how that sounded and just a warning before we do, the tape you're about to hear contains discussion of suicide as well.

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VOICE 1: I woke up and I had a letter that I had written a long time ago and I had many versions of that letter and basically left it on the counter for my parents.

VOICE 2: Dear Mom and Dad, I love you both and I'm writing this letter to get all my thoughts down for you to hear. I don't want to make you mad or sad and I want you to know that nothing is your fault. I am who I am and I didn't choose.

VOICE 1: Then I went to school and I was really scared to come back home because it was saying who I really was and what I wanted to do with my life.

VOICE 2: This is something I felt my whole life and I know you might think that I don't know what I'm talking about, but I have done my research and I haven't jumped to conclusions. I've thought long and hard about this. You might think this is just a phase.

VOICE 1: I told my parents that basically I was born in the wrong body and that I had always felt this way. I don't know, I was hoping that they would be able to accept me and that I wanted to be able to do this. Like I didn't want to live like as Caitlyn anymore because it wasn't who I was and it was basically like at that point in my life, I was very it was either this or not at all. Like you know I didn't want to keep living as somebody else.

VOICE 2: I think we should see a professional, so I can get help because I'm struggling and having a hard time and I can't take it anymore. The truth is I am transgender, female to male. This means that I was born with a female body, but a male mind. This is a real thing and I'm not the only person on earth who was born like this. My gender identity doesn't match my body and it's driving me insane. I can't handle how uncomfortable and depressed I am.

VOICE 1: Like pretty much cutting myself. I burned myself a few times and there is times where I had like tried to take my life before and I'm glad I didn't, but I think it was just a tough time for me like I just didn't know that any of this could be possible for me, like you know.

VOICE 2: I know this is hard for you to hear and you might feel like you are losing me, but I am not changing who I am. I am the exact same person on the inside, but I would like to transition so that I can be who I am on the inside and out. I know you might not accept it or support it or like it or understand it, but hopefully we can take little steps in this journey.

VOICE 1: Well like I've known my whole life like ever since I was little. Like for instance I remember whenever I was like two-years-old like in my dreams and stuff I'd be like a guy and stuff like that. And I remember as a small child like I would pray to God like why did you make me the wrong way. Can I please wake up and just be the right way.

VOICE 2: Transition is going to take a while, but we can start with little things like calling me by male pronouns and a male name. Maybe I can get a haircut and start appearing to everyone more like the guy I am.

VOICE 1: I got older and I kind of realized what transgender was and then I was like that's me. This is right. Everything I've been thinking is there's a reason and there's something I can do about it.

VOICE 2: There is also hormones and other things to help me feel more comfortable in my own skin, but we don't need to rush talking about that yet. All I'm asking is for a chance to be who I really am. You are the best parents ever. I love you very much. Thank you for reading this and it says, love your son.

AMT: There you go, the voices of Kian Osheski and his father Kent. At 14, Kian told his parents about his wish to transition from female to male. Kian and his family are being guided through the process by the Gender Diversity Clinic at the Children's Hospital of Eastern Ontario. The spike in numbers I mentioned means there are many transition process is underway in Canadian families. Dr. Margaret Lawson has an important perspective on this. She is a pediatric endocrinologist and co-founder and co-director of the Gender Diversity Clinic at the Children's Hospital of Eastern Ontario. She's joining us from our Ottawa studio. And in our Toronto studio, Cathy Maser is with me. She's a pediatric nurse practitioner and team lead at Sick Kids Hospital's Transgender Youth Clinic. Hello and welcome to you both.

CATHY MASER: Thank you.

MARGARET LAWSON: Thank you.

AMT: I just have to get your reactions to what you just heard. Cathy, why don't you start. What were you thinking as you listened to the father and son?

CM: Yeah well it's an all too familiar story that I've heard many times and it still makes me teary. The whole family transitions with the young person. It takes such courage for them to come forward. So that the self harm and the shame, it's all part of the package. So the more, the earlier we can help them the better it is for them.

AMT: Margaret Lawson, what was it like listening to that?

ML: I agree it is incredibly powerful. Kian and his family are terrific for sharing this story and it is very familiar, but every child we see are unique and we follow their journey so it's terrific to have Kian share it with others so that others can see what we do and why we do this and why the youth do this.

AMT: Margaret Lawson, how do you explain the growth in numbers of young people coming to clinics like yours.

ML: I don't know. I started providing hormone care to trans youth back in 2006. So it's been 15 years and I started seeing one or two kids a year for the first five years and then we formed our clinic in November 2011 and we saw eight kids this week three months and then it should double pretty much of a year until recently was like doubling, but this year 2018 we had 189 girls. Across Canada we're seeing similar a pattern and the question is why. I think there's much more awareness. I know there's much more awareness in a community when they come in they have heard it before the flu even identified themselves in social media, there's YouTube videos. It's in popular movies and shows and TV there are transgendered characters. So the youth are hearing it and seeing whether that fits with themselves.

AMT: Cathy Maser's nodding. What are you seeing in Toronto Cathy?

CM: I think that there aren't necessarily more gender diverse young people but they definitely have points of reference now that they didn't before. They have role models they have more visibility. I think we're creating hopefully an environment that's more acceptable to diversity and that's giving them the courage to come forward earlier.

AMT: So Cathy when you are a young person first comes to your clinic What are your initial conversations like?

CM: To get to know you initially with the young person and their care provider who usually their company by a parent, at least one and just what's their concept of self. What's their understanding of gender? Are they safe? Where they are at home and at school and are they socially transitioned? Do they have a plan for the future? It's just really an assessment overall.

AMT: And they often do have plans.

CM: Very specific plans. A lot of them done a lot of research as the previous tape indicated. They look into it or they have these feelings and they come across something that resonates with them and it makes sense.

AMT: Margaret Lawson after these conversations, what are the first steps of medical treatment for a young person hoping to transition?

ML: So if we start with in our clinic with health providers, social workers then they refer to endocrinology when the use is to talk about hormone therapy. So they as Cathy said they've already done a lot of research on this themselves and explain their health. So I see them and one of my colleagues too and the endocrinologists that I work with and we get to know these kids, we bring them in with their parents, ideally both parents and we and I tell them let's do it together initially. I explain the proces and that we're going to, there's no wrong answers. I need to hear the story again even though they've told it many times. I need to hear it directly from them and then I send the parents to the waiting room. And I say, no wrong answers, everything is confidential. What the youth shares, I would not share with the parent and vice versa. They all need a safe space and opportunity to share their side of what's gone on and to be able to ask questions for the parents in particular, as questions that they might be afraid of asking in front of the youth. So address any fears and misconceptions they have. And then we talk about once I take a full story from them and hear their story from beginning with they of course identify with the gender they identify now and examples of that, getting to know them and then I talk about options. And so the options that they don't have to choose one that day and the options include hormone blockers, which are the most commonly used ones in a day. They're reversible. There are side effects that we can mitigate those side effects and so that it puts a pause button on. There's a couple of options, but they have, they're not as effective and they have side effects whcih are not desirable by most youth. So most youth choose hormone blockers at the beginning.

AMT: So hormone blockers can also buy everyone some time to become more comfortable and more a part of the process, right?

ML: Yeah an important part of the process is that it puts that pause button and in many cases both parents are not fully supportive at the beginning. You may have one parent who's absolutely supportive from the beginning and another who says I don't know about this. This is just a phase. Can't we wait till he's older or she's older. And I hear that all the time and I can hear it just as commonly from fathers as I do from mothers. Whether they're intact family, whether they're separated, whether divorce, I hear the same thing. The blockers put the pause button on, the parents that I talk to about this can accept that and say OK I wasn't sure about the blockers, but now I realize how they work and that they are reversible. And so let's start with that. And at the same time the youth whether they want to move forward quickly, they're teenagers and that mindset of teachers. But they have done the research. So again blockers gives them the confidence that something is happening with blocking the hormones that they didn't want. They didn't belong in their body.

AMT: Cathy how much do you have to manage expectations because we are talking teenagers who want it happening yesterday?

CM: I think that's a huge part of the relationship building with a young person and getting to know them helping them to advocate and articulate what they want to because gender is personal and their identity is their own and also being realistic about expectations. Many of them are very upset with us initially because they perceive the process to be prolonged but at the end of the day those have been with us for a while. So now I understand why you made me sought out because it was a thoughtful process and we did it together.

AMT: And so when they want to move beyond hormone blockers what happens?

CM: That's another decision making process. So if they're interested in proceeding with hormones and we have another discussion as Margaret mentioned about what the benefits are what the risks are and they have to be informed of all to make an informed choice. They must be aware both benefit and risk. So we're pretty upfront about making sure that they are aware that they need to do more homework and understand what that is and take the decision lately.

AMT: Margaret Is surgery always a part of the medical transition?

CM: Not always. No. Increasingly in the last two years we've seen more requests for surgery and more youth wanting this. One of the factors that contribute to that is we have surgeons plastic surgeon. He went and did extra training in surgery in other centers that are doing this in the States and in Montreal so they use now know they can get it done. So that has to mean that working with the healing is done. The more you have it done the more you keep talking about each other the support groups that they attend. But Mukama to have a top surgery. The bottom surgery vengeful city is much less common in the pediatric years to some of them will talk about it. Most commonly they say no not now. Later when I'm older and I feel that this will have to do with it when I feel we should actually make things by themselves because they realize it's not necessary to go through transition. One part of it is not necessary to go through a full transition.

AMT: Cathy there was just a court decision in BC where the judge ruled against the father's attempt to prevent his son from getting treatment. What do you do and the judge, the the mother was in favor and the judge said that this particular 14-year-old had the capacity to decide was deemed mature enough. How do you handle that when when one parent is resistant or absolutely against?

CM: I think it's communication. I think it's really giving them the space to articulate their fears and concerns and help them get the information that they need. What are the facts what does the research show not based on myth but based on fact. As best we know it is a developing and evolving field and just working to support them. They may need different supports and sometimes they may not be fully supportive, but supportive enough that the young person can go forward.

AMT: And Margaret what do you say to a parent who says well you know maybe when my child grows up they can transition, but not now, not when they're an adolescent.

ML: Well I share with them is that the risks of not treating can actually be greater than the risk of treaing and because these youth as you heard from Kian, when you hear his whole story. He had to leave the youth feeling before they come to us. They feel depressed. They had anxiety disorders. They are cutting the self harm and the thinking of suicide and I didn't see that five years ago. The magnitude of how many these youth are really having serious things happening to them before they have hormone therapy. And so but I'm sure that with the parents as Cathy said Brady when one parent both parents may not be on side initially they can't fight really quickly. Know we start with forcible treatments and then when it comes to crosschecks hormones again we talk about the fact we start with low dose and so that the low dose in the first six months and the increase of six months if desired and then increase the next six months. So that is basically what we want to possess. The other thing that we talk about with you and with parents is that nothing is decided definitely you can't go back. Is it something you do want to stop treatment. They do want to stop the blockers to stop the crosschecks from them. They want to settle at a lower dose and that's OK. It's absolutley OK for you to say you know what I wanted, I wanted it initially now I don't or the hormone, I was going to want them, now I don't. And that's right.

AMT: How often has that happened?

CM: It's pretty rare. I was tracking that study that we do we do it across Canada study and within our own clinic and the like have that is it is 14 active patients at the seeing news and I've seen probably five kids in the last 14 years who have stopped at a stop crosschecks hormones or stopped blockers and decided not to conditions and a small number is to say it's just a phase. I can feel it is positive to save some youth are trying things on the side I need to try it with the blockage initially to see how it makes it feel. And then have a preferred made up for gender marker. See how it's accepted from their friends and their teachers and they for who they are and if that means in mind that that's OK. No harm done. And the youth will say to us please we ask them. Do you have any regrets. And looks like this if you know I got a new deal that you were thinking about who I was.

AMT: Cathy have you seen anyone. How many people have you seen who want to change their minds?

CM: Similarly a handful in several hundred young people that we've been working with. The blockers give them a space to do that exploration to figure out who they are and how they want to be without the distress of oncoming puberty. So it's a very important portion of the treatment plan.

AMT: But you both seem to be saying that in fact most young people are clear about this and they don't change. It's interesting we heard Kian say you know I've known my whole life. Right. Like he may have said something to his family at 14, but he was clearly thinking of it long before. And is that common?

ML: Yes and no. I see a common youth develop their gender dysphoria identify it when puberty began. So middle school did 7-8 is more common and when you see that they realized that they were transgender. And then something other than the one side when it was revealed them. Then there are some who say their whole life and that I was in the minority.

AMT: I want to just play a little clip here because I do have a clip of the director of the school of nursing at UBC. Principal Investigator on the Canadian Trans Youth Health Survey who Elizabeth says there are other factors affecting the ages of those transitioning and some of it has to do with the help they can get. Listen to her.

SOUNDCLIP

VOICE: In our survey we actually found that almost half of the older youth to 19 to 25 year old and more than a third of the younger teens 14 to 18 year old had not gotten them medical care when they felt they needed it in the previous year. And one of the key reasons was that they were afraid of what the doctor would say or do they also didn't want their parents to know and fully one in three said that they'd had negative experiences before in getting medical care.

AMT: Cathy Maser how worried are you about the young people who can't get the medical care?

CM: Very worried. Waiting for 13 months to get into our clinic is a longtime but at least they know they have an appointment and something to hold on to. In more remote areas that don't have access to specialized clinics like at CHEO or sick kids they don't have anywhere to turn. So their mental health is definitely affected by that. So I think there's definitely a need to I mean we have increased capacity over the last five years definitely. But there's definitely a need for more people to be aware of this and help kids sooner.

AMT: And Margaret Lawson there still isn't enough data on the long term. Is anyone following these young people into adulthood down the road?

ML: So we're doing a study, it'sa national study funded by Canadian Institute of Health Research. Where we are following youth at clinics across the country and the lead center and mythology that is kind of neat to talk to talk about 4 month therapy. The loan the study it is the consent decree succeeds and without medical sanction then the outcome is as a youth and parent base. And that's why it's kind actually involved with parents in the research and that the parents to disappeared because nobody's asked them how this story. And it's critically important to involve them because they also want evidence they won't be enough. And the moment is not long to be enough. And I wish we had done this and the youth and parents are very worried to participate for that exact same reason. They want they want information too. They want long term data.

AMT: What's it like for you Margaret to to help a young person make a transition and follow them through?

ML: It's wonderful. Of all the medical care I provide with hormone issues or hormone problems, this is the most satisfying work I've ever. done. These youth come in and they're not leaving any school they're going to be there. They put dedication with their family and friends. They are often said depression anxiety cutting self harm suicidality and they unduly not making eye contact and mimic the meeting with people who validate who they are. Knowledge includes their story it's the ones who know what's going on in their bodies and how they're feeling and then they become lost. It's amazing to see and then they begin to make you go across six months given a chance in the future instead of not attending school and not being what they used to be. They have plans for the future, post-secondary education.

AMT: Cathy's smiling as she listens to you. I want to let her get in on this too. We're almost out of time. Cathy what's it like for you.

CM: As Margaret's describing incredibly rewarding to watch young people grow into themselves and to find out who they are and be able to articulate that and think about the futures. It's incredibly rewarding and it's a blessing to be involved with them for sure.

AMT: It's so interesting to talk to both of you because your professions, your medical professions are changing as these young people come forward and look for change as well. Thank you both of you. We have to leave it there, but thank you for your time today.

CM: Thanks for the opportunity.

ML: Thank you.

AMT: That is Dr. Margaret Lawson, pediatric endocrinologist and co-founder and codirector of the Gender Diversity Clinic at the Children's Hospital of Eastern Ontario. She's in Ottawa. Cathy Maser is a pediatric nurse practitioner and team lead at Sick Kids Hospital's Transgender Youth Clinic in Toronto and she's in our Toronto studio. Let us know what you think. Tweet us @TheCurrentCBC. Find us on Facebook. Go to our website cbc.ca/thecurrent and click on the contact link. And stay with us, in our next half hour, the search for something that will cure. They went to a swamp to find it. We'll hear the story in just a moment.

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How this couple used a bacteria-fighting virus to thwart a deadly superbug

Guests: Steffanie Strathdee, Tom Patterson

AMT: Hello. I'm Anna Maria Tremonti and you're listening to The Current. Just before we get into this next interview, a warning there's some strong language. Canadian Steffanie Strathdee and her American husband Tom Patterson have always been intrepid travelers. They head off the beaten path to seek adventures and between the two of them they've been to more than 50 countries. Their trip to Egypt four years ago was supposed to be their dream vacation. They toured temples, tombs, ancient sites. Tom even crawled right down into the dusty dark tunnels of the Red Pyramid. Egypt would become their most memorable trip, but not for the reasons they'd hoped. It marked the beginning of a devastating medical disaster for Tom and it was caused by a bacterial infection that would not respond to antibiotics. It saw Steffanie an epidemiologist who spent her career researching HIV, embark on a desperate race against time to convince the medical establishment to use an old fashioned remedy for infections called phages. It was a race to find those phages, viruses that literally come from the swamp or from sewage. It was a race to make sure Tom could get the treatment before his body completely shut down. They take us through their story in their new book, The Perfect Predator: A Scientist's Race to Save Her Husband From A Deadly Superbug. Steffanie Strathdee and Tom Patterson join me from New York City. Hello.

STEFFANIE STRATHDEE: Hello.

TOM PATTERSON: Good morning.

AMT: Tom, I guess having you here with us today it's clear you survived. How close to death were you?

TP: As close as anybody can imagine. I touched death a number of times. I had seven cases of septic shock and each of those cases you have a high chance of dying and I can only say it's very harrowing experience.

AMT: So let's go back to this dream trip to Egypt. When did you begin to feel sick?

TP: Well we started our trip in November of 2015 and we had a great time. We were exploring the tombs the pyramids but the last night we were waiting to go to the valley of the Kings and I suddenly started getting ill after a wonderful meal. We thought I had food poisoning. And I just kept getting more and more sick. I just couldn't stop vomiting and then I started getting radiating pain around my back. At which point Stephanie called for a doctor. I'm the type of person who's pretty stoic typically and wasn't really anxious to see a physician I must say.

AMT: Steffanie he ends up in hospital in Egypt. When did you realize things were quite serious?

SS: Well when he started complaining about back pain and we had called a doctor to the ship who gave him intravenous antibiotics and some fluids and said oh he'll be as right as rain in a few hours and he wasn't. I knew that there was something wrong. I called a colleague of ours back home Dr. Chipps schoolie and he said get him to a hospital where they treat expats. And of course there actually was no hospital in Luxor where we were stationed and it was the clinic. They did the best they could and they diagnosed pancreatitis but that turned out to only be a symptom for a much larger problem.

AMT: So he is eventually airlifted to a hospital in Frankfurt. What do you discover about his condition in Frankfurt, Steaffnie?

SS: Well in Frankfurt they gave him a CT and one of the doctors in the ICU came to us and said look he's got an abscess the size of a small football in his abdomen and inside it is lurking something. And he showed me a flask that had brown putrid liquid in it and he said if this abscess had just formed then it would be clear fluid but it's not. Something is living inside this abcess. So we're going to culture it and let's hope that it's a garden variety microbe and not a superbug, because many microbial pathogens in the Middle East are multi drug resistant.

AMT: The bacteria was in what they called a pseudo cyst?

SS: Yeah it's basically an abscess which turned out to be a lovely little apartment for this superbug to move into.

AMT: You would come to learn a lot about this particular bacteria. The nickname is Iraqibactor. Tell us about it.

SS: Well it's official name and it's called Iraqibactor because so many veterans were coming back from the Middle East with it and it's what I consider to be a bacterial kleptomaniac. It's very handy at stealing anti-microbial resistance genes from other bacteria. And so we were throwing a lot of heavy duty antibiotics that Tom's infection and this hardy superbug basically just moved in after all these other bacteria were wiped out and flourished.

AMT: And so at this point Tom, how were you feeling?

TP: Well I was in and out of a coma. I was hallucinating. At one point there I thought I was a Buddha giving gifts to people when in fact I was throwing up. So I wasn't in good shape. I was in and out of consciousness.

AMT: Tell me a little bit more about this your view of what you were doing while your wife was standing there watching you project or vomit around the room.

TP: I thought I was a beautific Buddha and that when I opened my mouth I was giving a gift to the people around me and they were these streams of tinfoil that were just sparkling and moving across the room and they were all dancing around celebrating this when in fact I was projectile vomiting and they were all dodging my putrid mess.

AMT: So I'm going to move you ahead again because it seems like that just that would be enough. But then there's that. It just keeps. Every time I turn the page there's more so eventually you decide to bring him home to San Diego. You're hoping still that antibiotics are going to beat this Iraqibactor. Tell me about the moment when that changed, Steffanie.

SS: Well from the beginning this superbug was diagnosed. It was only sensitive to a few antibiotics that only partially sensitive. But by the time he was medevacked home to our hospital at UC San Diego it was resistant to all remaining antibiotics and the doctor said look we can't operate on him he's too weak. And if this organism gets into his bloodstream it's going to be game over because we don't have anything to stop it from spreading. So we're going to stick these catheters in his abdomen to try to siphon off the fluid. And what happened unfortunately is that the day before we were supposed to be discharged to a long term acute care facility. This one of his drains inside his abdomen slipped and it poured all of this infected fluid into his bloodstream and immediately went into septic shock right in front of my eyes and I was just stunned. The the bed frame was rattling and hitting the wall and he was rushed right back into the ICU and put on a ventilator to help him breathe which is essentially life support and he looks like hell. And so they put him into a medically induced coma for several days. But from that moment on he was slipping away from us. Little by little he was dying each day.

AMT: So the key here as well as he's going through this because the catheter slipped and now this infected stuff is has been pumping through his body.

SS: That's right. So now he was fully colonized with this superbug. And of course we have no antibiotics to fight it. And when I pointed to the bag of antibiotics that were on the IV pole to one of our doctor friends at one point said if you know if you don't have any antibiotics left to fight this thing then what are those for? And he said those are to make us feel better.

AMT: Wow. You know there was a pivotal moment when you're on a conference call with some of your colleagues and you hear some of that as well. What happened?

SS: Well this one particular day Tom was in and out of consciousness and I was supposed to be at a university retreat and it was an important meeting. So I joined by conference call for a short time all of my colleagues knew what was going on and many of them were medical doctors. One was a former University of California chancellor and a surgeon. And when he asked me during a break how Tom was doing and I updated him on all of the you know the laboratory markers and his progress. And then I said Oh my goodness I have to go because the doctors are coming to do rounds. They thought I'd hung up and I hadn't. And he turned to my other colleague and said Has anybody told staff that her husband is going to die?

AMT: What did you do?

SS: Well I held the phone in my hand and cradled it like a newborn baby and I thought to myself my God nobody has. And I decided that I had to have the talk with him. Even though I didn't know if he could hear me this particular day his eyebrows were twitching and I said, Honey I know that you're very tired and he'd been fighting this a long time and it's OK If you want to let go. And, but I want to grow old with you. I love you so much. And if you want to live please tell me by squeezing my hand. And I waited and waited. And about a minute later he squeezed my hand really hard. And my fist pumped the air and I said oh great you know. And then I thought oh shit what am I going to do now.

AMT: Because you tried everything. I can hear the emotion in your voice still.

SS: Yeah it was. It was just a terrible terrible experience. And I was so happy that he wanted to live but I'm not a medical doctor. I'm an infectious disease epidemiologist trained at the University of Toronto. I knew just enough about medicine to get me into trouble and we were at one of the top hospitals in the United States where all of our infectious disease colleagues were treating him and they'd run out of options. But I decided that I wanted to leave no stone unturned so that if he died at least he died knowing that I had done whatever I could.

AMT: Tom you are not even conscious for most of this time that she's talking about what's it like when you listen to her talk about it right now and you hear the ocean.

TP: It makes me more emotional. We both as a result of this experience had or may still have some PTSD. I mean it's incredibly traumatic for staff myself my family. They were flown my daughters to Germany because they thought it was in there one of the things that I really want to get across to listeners is how important it is to support people when they are unconscious you don't know if they can hear or not. I could hear and that's been a shock to physicians and others.

AMT: So Steffanie you decide you're going to, he wants to fight and you're going to fight, but you don't you don't know what to do.

SS: No. In fact I went home and poured myself a glass of wine and sat there on the couch and I thought well let's google this and there is Google for scientists. It's called pub med. It's a search engine that was developed by the National Library of Medicine and I put in keywords like acetate Abakar by moenia either superbug that was taking down alternative treatments and within about an hour I found a paper that had some obscure cure called phage therapy.

AMT: Now I just want to point out you're a scientist you've worked on HIV a long time. What was your attitude toward alternative therapies?

SS: Well I knew that we were grasping at straws. In fact you know we had even called in a healer and consulted with an intuitive counselor who was a psychic. And even though there's no science that can support a lot of these alternative regimens that we were pursuing. When you're desperate and somebody is dying you'll do anything.

AMT: So you came across viruses called phages. Can you explain what they are? How do they work?

SS: Well bacteriophages or phages for short are viruses that have evolved to naturally attack bacteria. So they don't harm human cells at all. They just target bacteria. And they're ubiquitous. They're actually the oldest and most populous organism on the planet. And they were discovered by a French Canadian Felix Darrelle in 1917 who a few years later used phages to treat a child with a bacterial infection in Paris and it was a success. And he went on to treat many other people and in fact so did others phage therapy had somewhat of a heyday in the 1920s and 30s.

AMT: And why didn't that take off after that initial discovery then?

SS: Well penicillin came on the scene and it was considered to be a wonder drug and certainly it was for a time and phages had to be matched to the specific bacteria that they attack. So they were considered to be somewhat finicky and in the West people forgot all about phage therapy but in Eastern Europe it was difficult to get antibiotics and they continued to use phage therapy and have done ever since. And of course Russia was a enemy of the West and as a result of that if you were a proponent of phage therapy you were supporting what was called pinko commie science. And so that geopolitical bias was a cloud over phage therapy for for many decades.

AMT: And yet the idea was kept alive using phages on humans who like somebody was doing work on this quietly somewhere you had to find them.

SS: Right. Well in fact feijoas have been studied for a number of reasons. Agents were used to really pioneer molecular biology and genetic engineering and the discovery of CRISPR most recently. But the phage therapy the application of phages to treat bacterial infections was that was long gone. And yet with the rise of superbugs there has been a rekindling of interest. It's just that in North America it really was still considered experimental treatment. So we had to first find researchers who had phages that were active against Thom's bacterial isolate and find them in time and then get approval from the FDA to give it to them on a compassionate basis.

AMT: So where do you find them or do they come from?

SS: Well you know because bacteria are very common in sewage and barnyard waste in ponds and things like that that's actually the best place to find what preys upon them which is the bacteriophage. So there were actually two teams that came to our rescue when I started emailing total strangers and sending them Tom's photo of him lying there in a coma. And I said Please help if you can. And researchers from Texas and University turned their lab into a command center. A graduate student actually lived in the lab slept there for a couple of weeks put everything on hold and the FDA were very helpful they helped us find a Navy medical research center in Frederick Maryland that also found phages to treat Tom and they sourced some of their phages directly from sewage as well.

AMT: This is an extraordinary thing that you describe. I mean find that you need these things you literally write e-mails to people you've never met. You send the picture. You know some people might go oh this is a virus. I'm not going to. This is a computer virus I'm not going to open it people open up right back to you.

SS: Yeah that's true. And I only wrote maybe you know a handful of researchers because I didn't go beyond theU.S. I thought we don't have enough time to you know ship feijoas you know from either Canada or or I know the Eastern Europe or or what have you. But Ryland Young from Texas A&M, he actually wrote his whole network of phage researchers around the world and pages phage researchers from Belgium India Switzerland all offered phage and in fact the Belgians offered their phage in a diplomatic pouch. So it was just a really wonderful thing to see that total strangers could step up to the plate to help somebody that they never met. And looking back on it now I realize that we were in such a place of privilege and the majority of people who are dying from superbug infections, and that's about one and a half million people every year, they don't have the kind of resources that we have. And that's one of the reasons we decide to write our story and write our book and we were really hope to move phage therapy into clinical trials so that it could be approved and scaled up to help people who don't have the resources we had.

AMT: So you're in a tight race against time. How close did you come to not getting the phages to him in time?

SS: We came very close to not making it in time. In fact I signed the consent form for kidney dialysis the same day that we started phage therapy. And I know the nephrologist who was supervising this and he looked at me and said Stephanie I'm so so sorry. And I knew that he thought that Tom was going to die. They didn't even wait till morning when the phages were ready. The night of March 15th they were administered first into the catheters in his abdomen to see whether or not he could handle it. And then the Navy phages were ready two days later and we injected those into his bloodstream and that was the scariest for us because we didn't really know if we had purified the phages enough to reduce the risk of septic shock. So he could have actually died from the phage preparation. In our minds and of course that didn't happen but that was one of the innovations of this case is that even though phage therapy is used in the former Soviet Union and in Poland they generally do not use it intravenously. And now that we know that these phages are safe to administer this way we've treated several other people this way as well.

AMT: So what was that like and can you tell us about that scene in the hospital the day he finally gets the phages?

SS: It was a really surreal experience. There were so many different doctors of different disciplines that were in the room or hovering at the door. Tom's daughters Jessie and Carly were there and we we just said well you know the give it a shot. And Jesse turned to the doctor and said What do we do now. And he said we hope and we pray for the most boring 24 hours you could ever have because that's the the golden hours that occur if septic shock is going to happen, it's going to happen within those first 24 hour period.

AMT: At one point you see progress and he wakes up briefly, but there's another set back and you need different phages.

SS: Yes so what happened was he woke up three days after the Navy phages were first injected into his bloodstream lifted his head off the pillow and kissed his daughter's hand and I went in the very next morning thinking that he was going to be awake and I'd be able to embrace him and he was septic again. He was in a coma. And I thought oh my god I missed my chance of seeing him. And of course we thought the phages were killing him. Everybody did. We stopped the phage therapy for a couple of days to determine you know what was going on and it turned out it was a different bacterium but this one was susceptible to antibiotics and he was able to recover from that other septic shock episode and we restarted the phage therapy and he woke up the next day and that was the happiest day of my life.

AMT: My mind reels at the number of things going on inside your body Tom while they're trying to they're trying to get rid of the bad things a new little bad things pop up and.

TP: Yeah without a doubt. I mean it was a roller coaster ride there. There's no doubt about that from even after the phage therapy I was still very very ill. I mean over the course of my illness I lost a hundred pounds all my muscle mass was gone. In the end I had to learn to swallow again. I had to learn to talk. I had to learn to walk again. The rule of thumb is it takes five times as long to recover as you were in the hospital so I was in the hospital for nine months so roughly a four year recovery if you will.

AMT: You touched on what you learned through time as a guinea pig with with phage is what impact has Tom's case had on our overall knowledge about phage therapies and their potential.

SS: Well it turns out that Tom is the first person in the U.S. and possibly in North America to have had intravenous phage therapy to treat a systemic superbug infection. And when his case was presented at the hundredth anniversary of the discovery of bacteriophage the story went viral and right away we started to get calls from people from all over the world whose loved ones were dying from superbug infections and they wanted phage therapy too. So calls from China Singapore Canada Australia Brazil and it hasn't stopped. If anything it's escalated and we have treated several other people successfully with phage therapy intravenously as a result of Tom's case and our chancellor of the University of California San Diego gave us some seed funding to open the Center for Innovative phage applications and therapeutics known as IPAF which is the first dedicated phage therapy center in North America and we're also designing clinical trials to determine whether phage therapy works on a broader scale and if it does then we can have the evidence to present to the FDA to license it as a standard treatment alongside antibiotics.

AMT: Is there work going on in Canada in this field now? You mentioned that it was a Canadian who was instrumental at the start of this process.

SS: I have a network of phage researchers in Canada that I've connected to. There is a phage library at the University of Laval led by Dr Sylvan Muno and he has had difficulty keeping his funding going to keep the library preserved and making it available to other people. There is only one phage therapy researcher in Canada and that's Dr John Dennis at the University of Alberta. He and our group at path are working on a number of different cases to try to help Canadians with superbug infections access phage therapy so I think it's a tremendous opportunity for Canadians to work in this field given that the superbug crisis is not getting any better. If anything it's getting worse.

AMT: Tom it's impossible to overstate just how many times you were on the brink of death. How have your attitudes and ideas about life changed through this?

TP: As you might well expect, and It might seem trite to say but life is incredibly sweet. The simplest things a sip of ice water is so pleasurable you can't even imagine. And I can only say that it's really a privilege to be able to stand up and advocate for this. And you know if my experience saves now it saved a number of lives maybe a dozen. But I'm hoping that'll multiply and be hundreds even thousands. How many of us can live a life and actually contribute that?

AMT: How has your relationship with one another changed?

TP: There's no question more loving than ever. How can I, it makes me very emotional even to think about it.

SS: I have my husband back. I started out with that one wish and it came true. But now seeing the potential that this could help other people. It's a life altering experience. There's no doubt about it. And we cherish every day. Everyday is a gift.

AMT: It's an incredible story. It is amazing to read just how you would not give up. Steffanie, thank you for sharing your story and nice to be able to talk to both of you.

TP: Thanks for having us.

SS: It's been a pleasure.

AMT: Steffanie Strathdee is an infectious disease epidemiologist, now the co-director of the new Center for Innovative Phage Applications and Therapeutics at the University of California San Diego. Her husband Tom Patterson is a distinguished professor of psychiatry at the University of California San Diego. Did I say California before, California San Diego. Their book is called The Perfect Predator: A Scientist's Race to Save Her Husband From A Deadly Superbug. They joined us from our studio in New York City. OK. Tell us what you're thinking. You got a love story in there and a cure that comes from a swamp. Tweet us @TheCurrentCBC. Find us on Facebook. Go to our website cbc.ca/thecurrent and click on the contact link. And stay with Radio One for Q. The American record producer and songwriter T Bone Burnett is on Q today. I'm Anna Maria Tremonti. Thanks for listening to The Current.

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Mar. 4, 2019 episode transcript

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