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The Current Transcript for August 10, 2020

Host: Duncan McCue

STORIES FROM THIS EPISODE

Prologue

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VOICE: If they do catch it, although they may be as asymptomatic, they have a similar viral load to adults. In other words, they carry around a similar amount of virus as adults do, which implies that they're probably just as infectious as adults.

DUNCAN MCCUE: That's respirologist Dr. Samir Gupta on how susceptible kids are to COVID and their ability to spread the disease, but the science is far from conclusive. And with September weeks away, there are still questions and uncertainty about children and COIVD-19. This is Canada's Chief Public Health Officer, Theresa Tam.

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VOICE: What we don't know as much about yet is how efficiently children might transmit to others. Today, it appears that children under 10 years are less likely to transmit the virus than older children and adults.

In a moment, we look at what back to school could mean for keeping COVID-19 surges at bay. Plus, we continue the CBC Podcast, Unlocking Bryson's Brain. Good morning. I'm Duncan McCue. I'll be sitting in for Matt Galloway this week. This is The Current.

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Kids may find masks uncomfortable, but they'll be vital to stopping COVID-19 in schools, says expert

Guests: Jason Kindrachuk, Nisha Thampi

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VOICE 1: When it comes to keeping our kids safe, I won't take any unnecessary risks.

VOICE 2: Schools can safely reopen if community transmission is low.

VOICE 3: The best place for children is in the classroom. Our plan is for children and students to return to classrooms on September 8th.

DM: Schools across the country are gearing up to re-open with a variety of precautions in place, so kids can be safe back in the classroom. The worry, of course, is that the return to school will mean more mingling and exposure, and that could create a spike in cases of COVID-19, not only in schools, but in our broader communities. So as the prospect of back to school approaches, parents, students and educators especially are grappling with many questions that still exist around the science of COVID-19. And children, as part of our series No Easy Answers will try to answer some of those questions today. My two guests are Jason Kindrachuk, an assistant professor in emerging viruses at the University of Manitoba. He's in Saskatoon now working on research and development into COVID-19 with the Vaccine and Infectious Disease Organization and the International Vaccine Centre. And Dr. Nisha Thampi, she is the medical Director of Infection Prevention and Control at the Children's Hospital of Eastern Ontario and an assistant professor at the University of Ottawa. Good morning to you both.

JASON KINDRACHUK: Good morning.

NISHA THAMPI: Good morning.

DM: Jason Kindrachuk, let me start with you. Based on what we know about kids and the transmission of this virus, what do you think of the plans to send most children back to school in a few weeks right across this country?

JASON KINDRACHUK: Man, this is becoming a really difficult situation, right? And I think especially looking at some the flare ups we're starting to see in places like Manitoba and the data that's coming out to suggest that kids may actually play a larger role, at least in the virus transmission based on a viral load they carry. It's a difficult conundrum that we're in. And I think we have to again. Go back to what is the current situation, you know, from region to region in terms of of transmission. And on top of that, how do we start to try and break down transmission within schools? We can no longer think of kids as being immune to this disease or having some sort of preconceived protection. We have to consider them as being, being like adults and being susceptible.

DM: You talk about the the larger role that kids are playing that's showing up in the data. Briefly, can you break down, I mean, what does the science tell us about how likely kids are to spread the virus?

JASON KINDRACHUK: Yeah, it's getting difficult, right? So what we know is that kids appear to be infected less than what adults are, but the viral loads that they carry when they are infected, so the amount of actual virus that they carry in their respiratory track is as high, if not higher in some cases than what adults. Now, we don't know what this means in terms of transmission. So how readily does that virus move from then to somebody else? But at very least, it gives us a bit of a glimpse to the role that they could play it. And I think we have to take this as a cautionary note. What we're dealing with an emerging virus to say that if there is some smoke there, what can we do to to try and increase transmission to the unfortunate side as much as we've talked about many times before through testing,tThat is all a lagging indicator. So once we actually start to pick up positive tests, the virus has already moved beyond that by a week to two weeks. So I think we have to start to think about this in terms of a game. The fact that if it could be there, we probably should be anticipating that, that it can actually spread.

DM: Dr. Thampi, what are some of the the reasons that young children could transmit this virus less than others?

NISHA THAMPI: So, I mean, taking a step back, there are multiple factors that determine the risk of infection to the child. And, you know, in a lot of these studies, they grouped children into younger than 10 versus 10 and 19. You know, it's more likely to be activities rather than biology that drives transmission. And, you know, activities in the environment are affected by the rates of infection in the community, the exposure risks in that child's life, if they're in school and day-care in the home and whether their contacts are the the case is effectively self isolating. But in terms of biological factors, there. There may be less receptors in young children such that these viruses and virus doesn't get in as as effectively as it does in older people. What's unclear is whether they transmit to others, as Jason was saying, as efficiently as adults, so.

DM: There are a lot of parents who are anxious right now as this is not the normal time for back to school. So we've got questions for you from parents and students about return to school. Here's one from Mita Naidu, who lives in the Metro Vancouver area.

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VOICE: My son is returning to grade nine in September and high school cohorts are 120 people. My question is, how will that affect my 87-year-old mother who lives in my home and is immunocompromised?

DM: Dr. Thampi, how would you answer that?

NISHA THAMPI: Yeah. So, you know, children, as we mentioned before, seem to tolerate infection with COVID-19 pretty well for the most part, but certainly a big concern about school reopening is having children and staff bring home the infection to their families, particularly when there is an older, frail adult or an otherwise medically fragile household member. There's you know really no easy answer to this, especially when there is limited space in the home to self isolate, like in multigenerational settings. And this is where there needs to be close collaboration with public health and school officials to increase the education not only in the school setting, but also in the home setting about infection prevention strategies like handwashing, respiratory etiquette, and working with families on how to develop an isolation plan should someone have a suspected infection.

DM: We called the series No Easy Answers for a reason. Jason Kindrachuk, I mean in this case there's a teenager heading off to school. How could a family protect more vulnerable relatives in the home if the kids are spending the days at school?

JASON KINDRACHUK: Yeah. This is a really difficult situation. Right? And I think ultimately it comes down to the sense of, you know, one, that the reliance that we have on one, testing and tracing. So we know that, you know, at school as kids head back to school, that there is going to be an increase in testing. So the hope is that we're going to be able pick up these cases a lot faster than what we normally would have been able to. And be able to, you know, track back and trace all the direct contacts. So we're we're relying on that. We're relying on the school system to keep kids socially distance and as well for kids of all ages to understand the importance of this. But there is still this importance of a game not kind of losing the idea of distancing and hygiene, as Dr. Thampi was was mentioning when we were in our home setting. If we have somebody that is immunocompromised or is in a position where they may be more prone to becoming infected, how can we start to try and win at that and understanding that just because we're inside of our house, that doesn't give us kind of an impermeable bubble away from COVID-19 and SARS-CORONAVIRUS2, which causes COVID-19. The virus doesn't care.

DM: You raised the question of social distancing in the school. That segues well into this next question that we have. This is from Jenn Turnbull in Victoria, B.C.

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VOICE: I have to asthmatic children. If they're able to physically distance within the classroom, will that reduce the risk of exposure?

DM: So those two children are nine and four. They're asthmatic. Jason Kindrachuk, is social distancing in a classroom gonna be enough to protect children with asthma?

JASON KINDRACHUK: Yeah. So, again, a great question. You know, we're learning more about the role of COVID-19 with asthmatics. You know that there was a larger, fairly broad study that was done recently that looked across asthmatics and COVID-19 in general, did not see a difference in terms of disease severity or or ability to become infected between asthmatics and non-asthmatics. But then you break it down and stratify by the type of asthma, and there actually may be something there, depending on whether they have allergic or not allergic asthma and it goes back to this idea of the receptor the virus and on and on and on. So ultimately social distancing right now and the I guess the reduced rates of infection in kids, likely all the data would suggest that again for kids that are asthmatic, that social distancing, as long as those things are kept in check and managed properly, likely we're going to see decreased rates of transmission overall. But it all comes back to this idea of having to maintain all those potential restrictions and not getting into a situation like we've seen with some of the video out of Georgia in the U.S., where kids, you know, were very close proximity. We can't break that down for a second.

DM: One of the worrying things you mentioned that example in Georgia where 260 kids where infected at a camp. I mean, one of the worrying things there were they were sleeping 15 per cabin. The windows weren't kept open. Ventilation seems to be really key in this conversation as well. So, Dr. Thampi, I mean, what questions should parents ask about ventilation in their children's classrooms?

NISHA THAMPI: Right. So, you know, good ventilation is a recommendation that's been in every returned to school plan from from health and education experts. And really, you know, we should be looking to have ventilation access to improved and optimised to increase the proportion of outside air brought in through these systems in consultation with experts, of course, in physical plant design. You know, so while I think physical distancing is helpful because we know the infection is spread primarily through large droplets and close contact, it's also important to ensure that the physical distancing within the indoor environment is possible and predictable alongside the ventilation. So it's a mixed mix of control strategies to reduce the risk of exposure for these two kids and others.

DM: OK. Another question from Aubrey Kogucki. He's going into Grade 6 in Toronto. His question is about masks. In Ontario and Alberta students in Grade 4 and up will have to wear them.

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VOICE: It's kind of hard to breathe. Also, like kind of like weird and it's like, it's hot. Like when we're eating lunch in the cafeteria, we have to social distance and we're sitting beside each other. Also when we're eating lunch will we have our mask on?

DM: So you can feel for Aubrey there. I mean, it's hard to breathe, it's hot. Jason Kindrachuk masks have been contentious throughout this discussion. A lot of kids are worried about having to wear them all day. Teachers are going to have to enforce that now. And when masks aren't mandatory for students, there are worries. What does the science say about masks and kids?

JASON KINDRACHUK: Yeah. The science ultimately comes back to this idea that, you know, we know that masks are not to be the absolute magic bullet in stopping transmission, but they do have an importance in the role that they play for. reducing transmission. And I completely sympathize. They are not comfortable, but I'm wearing one on a daily basis that at work and I agree, you know, they're not designed for comfort. And I think they are a reminder for us that times are not normal. But we have to, sorry, go ahead.

DM: Well, I mean, these are children though. So they're gonna pull them off at lunchtime or if they get uncomfortable and put them back on again. They're going to leave them hanging around their neck. What is a teacher to do in that situation?

JASON KINDRACHUK: Well, that's where, you know, it's not only the teacher, it comes back the idea of that you know in the home, trying to go about really kind of reinforcing this idea of how to properly take masks off and also put them back on and how we store them in the meantime. There is no easy solution for how to do this universally with kids. We've got a 22 month old. I appreciate, you know, how stubborn that they can be, but what we have to figure out a mechanism to teach kids how to do this, because it is going to be imperative for us to be able to add this on as another component on top of things like, you know, Dr. Thampi had mentioned with ventilation, keeping kids distance to try and reduce transmission. We don't have a vaccine. This is our means right now of being able to curb the virus from spreading.

DM: Dr. Thampi, can you give us some good doctorly advice that you may have for parents and kids on how to get comfortable on wearing masks for hours and hours all day?

NISHA THAMPI: Yeah. So, you know, it can feel strange to wear a mask in the beginning, and it certainly takes time to get used to it. So it's important to take the time now. You know, we've got a few weeks before the start of school, you know, to trial various types of masks and practice wearing it through these weeks of summer so that it can become more easy and more comfortable to wear a mask indoors. And, you know, whether that, so some families are getting their kids to wear a mask when they're watching TV or when they're doing their work to simulate, you know, sitting down and working.

DM: No video games unless you're wearing the mask. I read one column.

NISHA THAMPI: So you know that's if you follow the reward system, yes. But you know, I would also mention that it is complicated and really impossible to eat lunch without removing our masks. So in those situations, it is important to maintain physical distancing. And, you know, schools should be looking to either, you know, have physical distancing rules in place so that there's less reliance on individual behaviours to follow them or have like plexiglas barriers set up between individuals at tables as an alternative to the two metre distancing. But, you know, look at various strategies such that kids are kids and staff are not in close contact when we know their masks are down and they will be potentially spreading droplets.

DM: We've got one more question. This is from Ossana Ber in Toronto.

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VOICE: I have a four year old who's about to start kindergarten in September, maybe. We're just trying to figure out what's the best solution for him. Like we're not even sure if we're going to send him back or not. So one of the things I was thinking about is, as outbreaks increase due to schools reopening, do they think the government will be prepared with a Plan B? And their opinion what would that ideal reaction to that scenario look like?

DM: Might start in September. We've heard similar questions from parents and many of the parents we spoke to spoke with. Jason Kindrachuk what evidence is reassuring public health officials that the numbers aren't going to surge dangerously when schools reopen?

JASON KINDRACHUK: Yeah, you know, I think what we're looking at right now is that we stratify across again the you know, the different age groups that that have been most affected by this virus. But we don't tend to see is severe disease in kids, right. And ultimately, when we look at household contacts and we look at the spread of infection, the data is fairly reassuring that kids are affected less often than what adults are. We don't know the role they necessarily play in transmission, but at the very least, it seems like there is a reduced role for them in becoming infected in the first place. So I think that's somewhat reassuring for us. It is not a weak point for us like we've seen with other respiratory viruses. But ultimately, you know, we know when kids get infected there still is a bit of a black box in what happens afterward. So I think ultimately for us, we unfortunately are learning and trying to learn, you know, basically years and decades worth of information in weeks to months with this virus. And it is not easy and the calculus may change over the next few weeks as information becomes available.

DM: We've heard some of, you both speak about some of the things you want to see in place, ventilation, physical distancing at the schools. Dr. Thampi, what would you want to see happen if there was a case of COVID or worse, an outbreak at a particular school?

NISHA THAMPI: Yeah. So if a case appears in a school, I would want to see the local public health unit working quickly and closely with the school officials and affected families to prevent the spread of infection in the school environment. And, you know, I would say the system is working well if there is an appropriate and effective bundle of health and safety measures in place. But and also, you know, because all these strategies minimise the risk of exposure to students, to teachers, to school staff and families. What I would also like to see, though, is beyond the school setting. You know, kids well, we know that kids are more most likely to get an infection from adult household members. And so key for families in these next few weeks is to do our part to decrease community transmission, that we have a safe start to school and and to see our public health officials working with the administration to have a test trace isolates and reintegration strategy for these kids and staff who have had their infection resolved.

DM: Is and what you're talking about is a strategy to keep infected kids out of school. I mean, not just what happens in school. So are we going to, are our parents going to see, say, quarantining whole classes? I mean is that going to become a new normal?

NISHA THAMPI: So I think that'll depend on how we ensure physical distancing in a classroom setting and, you know, I think that there are various education experts that are working on this right now to determine what is a safe and effective way to cohort children in a classroom or the classroom itself as a pod, such that if one child gets infected, then the others will be. And I think that's where we have to work closely with our learning environment specialists, because they know the way that kids and adolescents move through the classroom best and can give us some direction on whether we would be looking at isolating whole classrooms versus pods within a classroom.

DM: We're at the end of the conversation, unfortunately, but just real briefly, Jason Kindrachuk, you're working on developing a vaccine. I've got to ask, how's that coming along?

JASON KINDRACHUK: I think ultimately we are in the best position we've ever been historically for for developing vaccines. In Canada we know that there are multiple labs across country that that are working on vaccine development, all using unique platforms. And I think what we've seen is the same thing reverberate globally. So I think we're in a position where we're not only looking at one vaccine that is potentially going to reach the public, but multiple vaccines in tandem that are going to reach the public. So I'm quite excited and enthused about where we are as an institute, but also where we are globally with this crisis.

DM: Hope is good to hear. Thanks for giving some hope to parents and some important answers here. Thanks for joining us.

JASON KINDRACHUK: Thank you.

NISHA THAMPI: Thank you.

DM: Dr. Nisha Thampi is the Medical Director of Infection Prevention and Control at the Children's Hospital of Eastern Ontario and an assistant professor at the University of Ottawa. Jason Kindrachuk is an assistant professor in emerging viruses at the University of Manitoba. And we'll continue to look into the various aspects of returning to school in a pandemic in our series, No Easy Answer. Let us know what questions about school are on your mind. You can visit our web site, cbc.ca/thecurrent and click on the contact link. CBC News is up next And then we've got more of the CBC Podcast, Unlocking Bryson's Brain. I'm Duncan McCue. You're listening to The Current.

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CBC Podcast: Unlocking Bryson’s Brain – Episode 6

DM: Hi, I'm Duncan McCue. You're listening to The Current.

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DM: This summer, The Current is bringing you some of the best from CBC podcasting. Today, we continue our presentation of Unlocking Bryson's Brain. In Episode 6, The Ethics of Cure, the search for a cure to Bryson's illness seems within reach, but it raises new questions about the ethics of this journey. Bryson's family seeks out new perspectives and learns why a cure is a loaded term in the disability rights community. Here's Bryson's dad, Keith McArthur.

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AMY RAMSEY: I think the one thing to remember about the brain is that its whole job is to adapt to experience. It is made to be changeable. There are few parts of the brain that are completely fixed. So I think if we give it what it needs, if that's energy, nutrition or the missing substance that that particular brain needs, that it can improve.

KEITH MCARTHUR: That's researcher Amy Ramsey from the University of Toronto. It's been about a year since the Gren one family meetup where I first learnt from Amy and other researchers that a cure for my son, Bryson's rare genetic condition might actually be possible. This fills me with so much hope that I've stepped back from my job as a writer to dedicate my time to poring over scientific journals and connecting with researchers around the world. I grill them about their research and try to learn more about green genes and MDA receptors and potential treatments. And of course, I ask them if they think we'll find a cure. How they answer this question affects my mood for days. Some researchers are so bullish that I become convinced that Bryson will be walking and talking and seizure free before he reaches adulthood. Others caution that a cure may not ever come, or at least not for decades.

AMY RAMSEY: The timelines for gene therapy. I think it would be something like five years would be really unrealistic. Ten years. Possible, but not probable. Twenty years, I could believe. 50 years. Absolutely. So that's what I think. Is that 50? Don't you think?

VOICE: That sunds about right. Yeah.

AMY RAMSEY: Yeah.a

KEITH MCARTHUR: But Amy says other treatments could come sooner. One thing we have going for us is that we already know Bryson's condition is caused by a known mutation in a single gene.

AMY RAMSEY: I'm pretty confident because you have the information that many parents who have kids with autism or, you know, pervasive developmental delay, they don't have that information. So they're they're in a worse place in a way because they're there. It's really not clear what the way is forward, but I think there's a more clear way forward for Bryson.

KEITH MCARTHUR: Amy's research has shown that if you correct a mutation in an adult gren one mouse, that mouse becomes more like a typical mouse. It becomes stronger, more social and better at navigating a maze. This gives me hope that a cure could help Bryson, even if it isn't discovered for years. But here's the funny thing. The more I speak with people who say a cure is possible, the more conflicted I feel about it. Because the term cure is loaded, it suggests that there's something wrong with price and that something needs fixing. That he's not perfect just as he is. But Bryson, he isn't broken. He's the most loving little twelve year old you could ever imagine. His smile envelops you with genuine warmth. His hugs are the purest form of love. Yes. One of the letters in his DNA is mixed up, but the vast majority, some six point four billion are copies of mine and Laura's. His little body is doing exactly what it's meant to. Based on the instructions in his own unique genetic code. I set up a call with Tim Banky from Denver. He's a double doctor, meaning he went through medical school and became a paediatric neurologist. And he's also earned a PhD in neuroscience. Smart guy. Tim sees multiple grinned disorder patients, and he's leading a study to catalogue symptoms and potential treatments. And how how confident are you that there will be a cure and what do you think that will look like?

TIM BANKY: I'm a half full person. We will have a cure. It will look like that babies will be identified on the newborn screen. They will be treated within the first month of life before a lot of symptoms develop. The therapy will be with gene therapy and they'll develop minimal to no symptoms as if it never happened. And that's what it will look like in 15 years. And what about for people who are teenagers or adults now? I think the therapy for them are also going to be gene therapy. But because development has already happened, that we will not be able to see full sinta reversal. But I'm hopeful that it's a good percentage. What do we think our patients want? We want them to be able to tell us when they hurt. We want them to be able to communicate other things about their wants. We want them to be able to walk. We want them to be able to talk. And so I think that's kind of the spectrum of what parents want. Yeah. We want our kids to be back to, you know, neurotypical. But I think you as family members need to tell us, you know, Doc, if you could fix this one thing, this is what it would be. Yeah, so what's what's your answer to that question? I need to know.

I think my answer would be. I mean, the thing that scares me the most is what happened to my son when my wife and I aren't around anymore. Yeah. And so, I mean, maybe I'm greedy, but I want him to be able to live independently. Right.

That because.

So if you if he wasn't able to live independently and you and your wife were here, you'd at least want him to be able to tell somebody.

What his wants and needs are. Yeah, for sure. So.

Well, thank you very much for this.

I wanted to be realistic. I don't want to kill hope here.

Hope is something that we have to keep running on, right? Yeah, yeah, absolutely.

I don't know if you could tell from listening. But that discussion with Tim. It broke my hope a little because I want to believe that a full reversal for Bryson is possible. That scientists will flick a switch someday and he'll suddenly become neurotypical.

But in my head, I know that's not realistic.

And when I listen back now to what Tim told me, it's remarkable. He's predicting that in less than 20 years, babies born with grim disorders will be fully cured as infants and that older patients like Bryson might get a partial cure and learn to walk and talk.

I ask Scott and Theresa, the parents of Bryson's green twin Olivia, what they think about the potential for a cure that might unlock their daughter's brain.

Well, you know, again, as I've come to just love her the way she is and I. I don't want to change her. You know, she wouldn't be the the the young lady I've come to love so much. My my hope for all the research is for kids in the future and some of the little kids now, there will be a cure or some way to at least change some of the symptoms that kids have benefited.

Make life easier for her. There's part of me that would be interested in that. But I don't it's it is hard. It would be a very hard decision.

I mean, we certainly worry about her future. We're extremely protective and have trouble leaving her for an extended period of time. And so, yeah, I mean, if there was something that could make her a little more aware and could do some things to keep yourself safe. And then, you know, I mean, that would be awesome. You know, I got it. I got to wonder, like, if genetic engine reengineering river or whatever its broad term is changes. One thing is what else is it going to change, you know?

So, yeah, that's something. You know, Larry, I learn I have had a conversation that if there was like a button we could press and the press would just suddenly be typical. You know, we would both say that we would do it, but it wouldn't be you know, it's not as obvious as most people think that it would be. There was this hesitation for Sheila.

Hello, hello. Hi, there is Tom Shakespeare here. Sorry I'm late. Oh, no worries. Hey, Tom. Since Bryson can't tell me what he thinks of this quest, we're on to find him a cure. I need to talk to someone else about all of this. Tom Shakespear is a bioethicist at the London School of Hygiene and Tropical Medicine. He's also a disability rights advocate. Tom was born with a kindred pleasure. The most common cause of dwarfism. His disorder led to a spinal cord injury in 2008. And since then, he's used a manual wheelchair to get around or leg braces and walking sticks that help him to walk short distances. So I guess maybe wanted to start by asking for your advice in terms of as we're going forward with this project and trying to find a cure. What should we be thinking about in terms of making sure that we're doing that in an ethical way?

I mean, in in the disability field, the notion of care is controversial because many people born with conditions say that they're happy the way they are and they don't want interventions that change them, because when you're born with the condition, it really becomes part of your identity and they don't want to be turned in somebody different if they're short. You know, they've got used to that. They were born with that. If they they're blind, they can't imagine life without it. Now, for non disabled people, particularly doctors and scientists, they can't believe that the things bizarre, strange, but it is the case that you become adapted, that life can be very good with all of those conditions.

A bunch of research studies show that people with disabilities are at least as happy as able-bodied people, even though most able bodied people imagine that a disability would have a profoundly negative effect on their quality of life. All of this makes me think. As Bryson's dad, I sort of think of myself as a fierce advocate for people with disabilities. But as an able bodied person myself. What if I'm approaching all of this in the wrong way? I don't want to change Bryson into a new person. I love who he is. But at the same time, what I'm asking for is pretty radical change. I want Bryson to be able to talk or at least express his wants and desires in another way. I want him to be able to walk or at least be able to pilot his wheelchair on his own. And I want him to be free from these seizure like episodes that cause him so much grief.

You know, it's very hard to find a proxy for Bryson. But, you know you know him better than any doctor. You spend all his life with him. And therefore, you know, if you're respectful that sometimes his perspective by different from yours. And if you're open to the challenges of the disability rights community whose perspective may sometimes be different from yours. I've got a disabled two disabled orphans. I would send both of whom are grown up. And I know that it's complex. Being a parent, you want the best for your child. But it's every parent, regardless of the child's disability or not, has to learn that sometimes what you think is best for the child may not be what the child thinks is best for them. Now, it may be that Bryson can't articulate that, but you have to somehow find this, find the place where you can be respectful of that.

Yeah, I mean, I do. I wish I could ask him, are you okay with me, you know, telling all your secrets on this podcast? Are you okay with me working with researchers to try to find a cure that would could could radically change who you are?

I would imagine that, yeah, you don't want him just fit in, you want. You've talked to me about mobility limitations. Talk to me about seizures. You've talked to me about developmental delay. You know, I. I think you're being respectful in seeking to minimise the impacts of these difficulties. But I don't think I hear you saying we want a different son. I think if I if I'm not wrong, you're saying we want a son who can maximise his abilities. Who's free from this debilitating seizure? Who isn't so inconvenienced by the limitations he has. But, you know, we know he'll always be limited and we accept that.

Have I accepted that? I mean, I accept and love Bryson unconditionally.

And I guess I know it's likely that he'll always have more limitations than the average person.

But am I willing to accept that?

So is it is it right for me to want something that that is a full cure? Like, I don't know how realistic it is, but is it wrong?

Yeah. I mean, let's let's let's acknowledge it's highly unlikely, I'm afraid. No, I don't think it's wrong for you to want that. I. Yeah. I think I would counsel you to be comfortable with the limitations that we all have and embrace and probably will still have even after any treatment. You know, the problem in the area of care is hype. And people hype up things for all sorts of reasons to get Nobel prises, to get more investment for their research, to get promotion and to bring health. Hope and sometimes false hope can be very, very cruel for people themselves, for their families.

So I think we have to be balanced and realistic. So I don't want to depress anybody. But, you know, don't wait up. Make the most of what you have. Take the small tweaks that make life easier. And let's think about a society where we can enable everybody to flourish regardless of their differences.

As I speak with more people in the disability community, I come to learn that even this notion of a magic cure pill is something of a loaded cliche.

So I have a policy, too. I was born with this body and I have lived in this body for 50 plus years.

KEITH MCARTHUR: That's Eli Clair, a Vermont, based poet, speaker and activist. Someone else I'm hoping can help me navigate the ethics of this journey I'm on to find a cure.

ELI: From the time I was about five six through zone, I've been asked if there was a pill to take that would magically. Take your cerebral of away. That would mean that my hand trembled less than I would speak without a slur, that I would have more balance and coordination on and on and on. Would I take the pill? Completely hypothetical question, because there is not even serious research on a cure for C.p. But those hypothetical question is something people have posed to me for a long time and long before I had developed disability politics. By the time I was 14 and 15 of us entering the question, no, I would not take that pill. And people always responded to me then if I had just come in from Mars, cause I've come to believe that the question is really rhetorical. But the people asking the question absolutely understand the answer to be yes, of course, in a heartbeat I would take that pill. But by the time I was 14 or 15, I knew that I had no idea who I would be without this very particular kind of body.

KEITH MCARTHUR: Eli is author of several books, including Brilliant and Perfection, which explores the nature and meaning of the word cure.

ELI: We live in the courtroom. That's why Western courtroom where cured. The hand of Ivan unquestioned. Good, regardless of context. Sell it. At one end of the spectrum, we had this dominant control, belief and cured always sonde after always necessary and always both an individual and the collective good. And then the other end of the spectrum. Then this villain, the politics that really declares that disabled people want civil rights more than we want cures and. This book really tries to find the Nacimiento between those two. Paul is because. Q Both saves lives. And then social control here makes billions of dollars of profit. And lessons chronic pain killer says some partisan lines of word of the. And the other body and minds are disposable.

KEITH MCARTHUR: Eli says the word cure is violent because it's always about eradication. Sometimes it's about eradicating a disease from an individual, which is what I'm trying to do with Bryson. Sometimes it's about eradicating a disease altogether, like the global effort to wipe out polio.

ELI: Other times than the eradication, isn't it? The condition itself, but about an eradication of a whole group of people. I'm thinking of. For instance, Down syndrome and the Ānanda gland. That's a controlled hazard, found a KIV with the condition of Down's syndrome. Instead, there's this drive to eradicate the feed shib people who might have Down's syndrome.

KEITH MCARTHUR: One way Eli sees that eradication happening is through prenatal screening. Amniocentesis is a common test where fluid from a pregnant woman's uterus is removed by needle and genetically tested. The procedure is typically used to identify Down syndrome or other genetic conditions. If the results come back positive, some parents choose to have an abortion. And if it feels like we're getting into extremely sensitive territory here, juxtaposing abortion rights and disability rights, Eli says that's not really what this is about.

ELI: My thinking, and this is embedded in the very pro-choice, pro-abortion, potent heggs. And at the same time, rather than questioning individual. Women's choices or couples should have, rather than questioning those individual moments. I think it's possible to look at the pattern of abortion. And certainly there is a pattern of avoiding foetuses predicted to have Down's syndrome and that pattern needs to be named.

KEITH MCARTHUR: And when you say it needs to be named, is it a form of eugenics?

ELI: Yes. Yes. I would say that not every individual choice is a form of eugenics, but the pattern certainly is a form of eugenics and that pattern is shaped by so much. The parents who are making the choices to abort are facing really high pressure to how the genetic testing in the first place. And then they're facing a kind of genetic counselling that's often really biased against continuing violence is facing a kind of genetic counselling that doesn't deadline could talking with families who have family members, both children and adults who have Down syndrome.

KEITH MCARTHUR: I tell Eli about a family that learnt through amniocentesis that their unborn child had a variant in one of the green genes. This pregnant woman wasn't in our community, but another mom posted on her behalf. And so they came to our online community and sort of asked, like, what would it be like to raise a child like this? And, you know, I guess in a way that's that's a good thing. But I still kind of took it very personally, like it felt like a sort of judgement on the value of my son.

ELI: Right. Right. And how personal that feels when your son isn't seen as valuable for who he is, exactly who he is right now, regardless of what you or he desire for the future.

KEITH MCARTHUR: Right. And so if I feel like that, I can only imagine how people, you know, with Down syndrome, for example, must feel.

ELI: Right. Right.

KEITH MCARTHUR: Here in North America, we'd like to think that eugenics were a European phenomenon.

SOUNDCLIP

VOICE: The Nazis and the Gestapo are passing from the stage of Europe, but even as they go, they leave a trail of slime and abominable crime.

KEITH MCARTHUR: That we were on the right side in World War Two and helped to overcome this evil.

SOUNDCLIP

VOICE 1: Crowds in their millions await the official word that victory has been won in the west.

VOICE 2: Today is Victory in Europe Day.

KEITH MCARTHUR: But in 1928, five years before Hitler became chancellor of Germany, the Alberta legislature passed the Sexual Sterilization Act. In introducing the bill. Health Minister George Hoadley referred to the increasing burden on taxpayers of having to take care of immigrants and mentally disabled people. At the time, it was assumed that conditions for mental illness, to alcoholism, to epilepsy were hereditary. So preventing such people from having kids would be good for humanity's future. Over the next five decades, two thousand eight hundred and thirty four people were sterilised in the province of Alberta. People from more vulnerable communities, including indigenous people, Maiti Catholics and immigrants of Ukrainian descent, were disproportionately sterilised. While many consented, sometimes under duress, the act was amended, so people diagnosed as, quote, mentally defective would face forced sterilizations. As recently as 1972, the year I was born, some 50 people were sterilised in the province of Alberta. Under this law. And in the United States, the Supreme Court ruled in favour of forced sterilisations in 1927, arguing that the world would be better off if, quote, instead of waiting to execute degenerate offspring for crime or let them star for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Amazingly, that Supreme Court decision has never been overturned. I'm rehashing all this painful history because there's a thread that connects all this from forced sterilisations to designer babies to prenatal screening to curing a debilitating disease in a 12 year old boy. I love more than just about anyone else in the world.

KEITH MCARTHUR: So every day there's news about CRISPR especially, but just in general, how new science can potentially cure genetic conditions. So how do you react to those?

ELI: We don't have a good track record of our ethics keeping up with our technology, tell AI we divide this knowledge by genes and these up and coming gene technologies and the. Worry. Worried being mined. I'm terrified because I know. I think tonight how we're going to use that knowledge and those technologies lags way behind. The technology itself. Who's seen as valuable and who is seen as disposable? And who's making those decisions?

Is one more big ethical question raised by both Tom and Eli, and it's about the cost of a cure.

Bryson is here. He exists. His needs are evident. His rights are real. And so we should do everything we can to help. Bryson The question then comes about priorities. How much money should we spend? What if it would cost hundreds of thousand dollars to help one person like Bryson, which could be spent on one hundred people who maybe have lesser conditions, but you would get a greater overall improvement in quality of life? But the resources are limited, they're finite. And the priorities of researchers, you know, there's only so many researchers. What should they be researching? Ebola, muscular dystrophy, which is very, very rare. Your son's condition, which is even rarer.

We live in a world where we can put money into this very, very high end research. The U.S. still have people who don't have the most basic of basic of basic prenatal care. A cow can both exist at the same time, you know. That's another part of the I think that looking for a cure, this technology that will be available, particularly in first and maybe for men in decades only to the most privileged.

I've talked before about spinal muscular atrophy, a terrible disease that kills many children before their second birthday. Until recently, there were no cures. But thanks to pushy parents like me partnering with researchers, there are now two gene therapies on the market and even more going through clinical trials.

But the cost of these therapies is astronomical.

Spin rasa costs seven hundred and fifty thousand dollars U.S. in the first year, plus another three hundred and fifty thousand dollars a year. After that. So against MMA, a competing gene therapy comes at a one time cost of two point one million dollars US. And I know there are horrific examples of pharma companies gouging customers, but it also comes down to the economics of rare diseases.

If it costs three billion dollars for a biotech company to find a cure for a disease that only affects 10000 people, it needs to charge three hundred thousand dollars per patient just to break even.

If Chris Burke achieves its potential and results in cures for dozens more diseases, these won't come cheap. The costs of these treatments will put pressure on governments and insurance companies around the world and may further entrench a system where access to a cure depends on your financial situation.

Sometimes I worry that my efforts to push for a cure might lead to one that we won't be able to afford for Bryson.

There's privilege and cure and privilege in treatment.

Laura and I are both white and well educated and financially secure.

English is our first language, and it's not right.

But I have to recognise that all of this gives us a certain privilege to be pushy advocates for our son in a way that others cannot.

I'm willing to bet that the families who have already received grinned disorder diagnoses for their children are on average more affluent than those still searching for a diagnosis.

There's certainly a bias towards more affluent countries. Hundreds of people have been diagnosed with brain disorders in North America and Europe, compared with very few in Africa and South America.

As I search for a cure for my son, how do I make sure that I'm doing it responsibly?

That's a really big question and that's a really great question. I would say part of it is. Always holding both your individual circumstances alongside. Knowing that those will always, always, always have collective impact, that your search for a cure for your son will have impact on other people. If a cure with found for green conditions, the way that would play out for. Upper middle class and rich. And white. Families and people. It's really different than how it would play out for. For brown and black fans. The Tical in the US without single payer health care.

I would also imagine that finding ways for your son to communicate as much as possible is a really important piece of it. No. His leg, like he may not be able to participate in big decisions that does. He won't communicate what brings him joy.

What brings in SA Woodring's and discomfort?

We've you've given me so much to think about. I did want to ask, is there something from your book that you would like to read related to that, those discussions?

Let me read a piece from the very beginning. The book called. Prayers first told them diamonds. And this piece really lays out some of the groundwork of why my exploring career has been really important to me, because Kuhr has been with me from a really early age.

Strangers offer me Christian feathers, a crystal of entitlements, always with the same intent to touch me, fix me, mend my cerebral palsy. If only I will comply. They cry over me, wrap their arms around my shoulders, kiss my cheek. After five decades of these kinds of interactions, I still don't know how to rebuff them. How to tell them the simple truth, then I'm not broken. Even if they were a cure for brain child that died at birth, I refuse. I have no idea who I'd be with. Have been trimming intense monthlies. Slurring tone There's so many unnatural want to make me normal. Take for granted the need and desire for care.

That's only part of prayers, crystals, vitamins. You can hear Eli reading the full prose poem at the end of this episode.

Thank you very much.

Yeah, you're welcome. Thank you.

These conversations with Tom and Eli will help us make sure we're pursuing this quest in the right way. But Laura and I can't do this on our own.

I hear from Denise Runner, one of the parents we met years ago at that first Green One family meet up in Colorado. We talk about a global charity that would focus not just on green one, but mutations in any of the seven green genes. Denise Spice, the Web domain cured green dork and registers the organisation as a U.S. charity. She invites me to join the board of directors because of the connexions I've made with researchers around the world. We decide that I should be here. Grants Head of science.

The only problem is that donations to a U.S. charity aren't tax deductible in Canada. So Laura sets up a Canadian wing. We partner with the University of Toronto, where Amy Ramsay and Graham Collingridge are already doing research on mice with brain mutations. Getting involved in this foundation changes our perspective. Once again.

We're no longer just looking for a cure for Bryson or for the six other kids with his precise mutation or even for the 80 or so patients in our GREN one support group. But for hundreds of people with mutations in any green gene and thousands more who have yet to be diagnosed with this rare disease, in less than four years, Bryson has gone from an isolated patient with an unknown disease to a warrior in an army of patients, families, doctors and researchers around the world coming together to support each other and find a cure.

I've said before that my journey is a sort of medical mystery. And like any mystery breaks in the case can come from unexpected places.

KEITH MCARTHUR: One day, a friend of a friend comes across a blog post I've written about Bryson. And she connects me to Anirvan Ghosh, one of the most senior scientists at Biogen. That's the company that brought Spinraza, one of the therapies for spinal muscular atrophy to market. Biogen is one of the biggest biotech companies in the world with a market cap of about $70 billion Canadian. We connect by email and Anirvan offers to get on a phone call on a Sunday to help me out.

ANIRVAN GHOSH: Hello. Yeah. Oh yeah sorry I was starting the recording.

KEITH MCARTHUR: I tell Anivran about Bryson and his rare disease. And he tells me about his background, which includes quite a bit of research into NMDA receptors at Roche and other biopharma companies. He says we're on the right path, making Connexions with researchers and neurologists at universities and hospitals. But he says we're missing out on a whole swath of experts. Those researchers working at pharma and biotech companies. He runs through a list of companies I should meet with. Voyager, Homology, Wave and offers to connect me with their chief science officers. Most of these companies are in the Boston area.

ANIRVAN GHOSH: a'm a bit of a Boston centric, but also, it's also true that they're more vibrant companies in Boston than anywhere else in the world.

KEITH MCARTHUR: Right OK.

ANIRVAN GHOSH: Not a bad place to start. So if you get to the point where you're saying that, you know, I want to go to Boston, I want to talk to some people, then I would be able to connect with the right person.

KEITH MCARTHUR: Well, that's amazing. I really appreciate this. As soon as I get off the call, I brief Laura on everything I've learnt from Anirvan. A few minutes later, we're looking up flights to Boston.

ELI: So this is called prayers crystals vitamins. Strangers offer me Christian prayers or crystal and vitamins, always with the same intent to touch me, fix me, mend my cerebral palsy. If only I will comply. They cry over me, wrap their arms around my shoulders, kiss my cheek. After five decades of these kinds of interactions, I still don't know how to rebuff their pity. How to tell them the simple truth, then I'm not broken. Even if they were a cure for brain child that died at birth, I refuse. I have no idea who I'd be with. How like trimming intense mantels, slurring tone. There's so many unnatural want to make me normal. Take for granted the need and desire for care. Strangers ask me, what's your defect to them? My body mind just doesn't work, right? Give fact being a variation of broken, supposedly neutral, but think of the thing code defective them K3 three player that won't turn on the car that never ran reliably. They end up in the bottom drawer dumpster scrap yard, give fact disposable and abnormal by their minds or objects to eradicate. Strangers tap me on the hand, they whisper platitudes in my ear, I could say, is that courage? Inspiration? Then think about how remarkable I am. They declare me special. Not long ago, a white woman wearing green earrings and fringed leather tunic with an motherson we all painted on its back, grabbed me in a bear hug. She told me then I like all people who tremor was the natural shaman. Yes, a shaman. In that split second, racism and a bull ism tumbled into each other yet again. Then Titelman that lead why he voted to co-opt Indigenous sped tritely. These tangoing and the ablest state had this dode disabled people with spiritual qualities. She whispered in my ear and then finally trained, I could become a great healer, directing me never to forget my specialness. Oh, how special disabled people are. We have special education, special needs, special spiritual volunteers. That word dreads condescension. It is no better than being effective. And want to pause here. For a content note, this next paragraph, I use some ablest and racist hate language and I say the words rather than the euphemisms for those words. Strangers, neighbours and bullies have long called me retired. It doesn't happen so often now. Still, there's a guy down the road who, when his drunk taunts me as I walked by with my gun, but when I live in town, retired with the daily occurrence, once on the camping trip with my family. I joined a whole crowd of kids playing tag in and around the picnic. Charlie Sheen as Low Cundy nine year old. I quickly became it. I chased and chased. They caught no one. The game turned. Kids came cause ducked away. Yelling retied frustrating. I yelled back for a while. Read hide became monkey. My playmates circled me. Then words became a taunt. You're a monkey, monkey. Monkey. I. I choked some frustration. Shame. Humiliation swallowed me. My body mind crumpled as it lasted two minutes or two hours. I don't know when my father heard the cause canting. Even the word monkey connected me to the non-human natural world. Big, supremely unnatural. On these kids, adults, strangers doing new legacy, naming disabled people, not quite human. They approach me with fairs, invite humans taunts and endless questions, convinced that unbroken special inspiration a tragedy in need of cure, disposal. The momentum are centuries behind them. They have left me with sorrow, shame and self-loathing.

DM: That's Episode 6 of Unlocking Bryson's Brain from the team at CBC podcasts. Tune in tomorrow for the next chapter in this story. And that's our program for today. Stay tuned for Radio One for Q. Today, guest host Talia Schlanger speaks with Oscar-winning director Oliver Stone about his new memoir, Chasing the Light. Hear how his experiences as a soldier in the Vietnam War shaped his raw, radical approach to filmmaking. And you can always check out CBC Listen. It's the best way to discover the very best in Canadian audio from CBC Radio, CBC Podcasts and CBC Music. The price is right. It's free. We'll leave you this morning with a song from the soundtrack of Oliver Stone's seminal film, Platoon. Whether you hear it as a wise-ass protest smack down or a subtle satire of small town small mindedness, Merle Haggard's "Okee from Muskogee" was as controversial in its day as the director who drew inspiration from it. I'm Duncan McCue. Thanks for listening to The Current.

[Song: "Okee from Muskogee" by Merle Haggard]

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Aug. 10, 2020 episode transcript

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