TB Talks, S2: Episode 3 – Get Away from Me


Our third episode looks deeper into the impact of stigma, particularly on the experiences of one young woman whose life had been repeatedly up-ended by the disease.

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Shivoan: Hello, I’m Shivoan Balakumar, and welcome to episode three of TB Talk: A Community Outbreak Story, an in-depth look at a 2019 tuberculosis outbreak on a northern First Nation in Saskatchewan.

A production of the National Collaborating Centre for Infectious Diseases, it’s the result of a partnership with NCCIH, the National Collaborating Centre for Indigenous Health, and NITHA, the Northern Intertribal Health Authority.

So far in our series, we’ve heard the stories of two TB survivors. In this episode, we’ll share the story of a third: a young woman whose family fought the disease, herself included, and how frontline workers connected to her, and those around her.

Shirley: it was really interesting to learn all the dynamics and where the possibilities of it could be spreading and the education one had to do, you know, ‘cause you’re in contact with the people.

NARRATOR: As a key player in the frontline response to the outbreak, NITHA TB nurse Shirley Nelson appreciates the direct impact of her work.

Shirley: it is such an opportunity to do the teaching right there. And they are so much more open when they’re – it’s acute. They’re kind of like, oh my god, y’know, and they’re asking so many questions. And you’re able to provide that education and provide reassurance and we had experiences where one of the guys started crying when he had a positive, eh? We had to spend a lot of time with him, educate, calming him down.

NARRATOR: With robust contact tracing a central pillar to any outbreak response, the TB program augmented their approach with a strategy known as “social network analysis,” a systematic study of the relationships between people and places in a community.

Dr. Nnamdi Ndubuka, NITHA Medical Officer of health, explains.

Nnamdi: The implementation of the social network contact investigation, which was a major success for us, is really key and should be implemented real-time within the outbreak setting, because it has the ability to map out cases in a spatial format and it can supplement the traditional tracing approach. We were able to identify additional contacts and cases that were missed through the traditional contact trace. The social network analysis helped to identify 80% of the contacts and cases within this particular outbreak which is really, really enormous.

There’s also the opportunity to look at the high risk households recognizing that within our communities, crowding and poor housing generally is a key factor that tends to propagate disease spread.

Shirley:  When there’s a hangout place, say, for instance, a card place. There’s, like, so many people that enter it. So, you got to think of, ‘OK, who’s actually staying there? How long? And what priority should I be giving them?’ Because I don’t know for certain they’re staying there all the time or if they’re visiting daily. So it’s just trying to organize all that.

Nnamdi: So, doing that spatial mapping, that gives you a visual idea of the networking, can help you target specifically where the active cases potentially might be coming from, and quickly act in terms of providing those the opportunity for screening and prophylactic measures.

NARRATOR: Another key player in NITHA’s frontline response to the outbreak: community TB worker, Kelly.

Kelly: I don’t know the number of contacts that we had, but since December I think our number’s at 85 now; people that have been on treatment since December.  So it was important to keep organized.

NARRATOR: As Kelly and Shirley continued their investigation, one of the people who showed up on their growing list was ‘Talia,’ the name we’ve assigned to a quiet and determined young woman who, sadly, was no stranger to TB.

Talia: TB came in my life when I was 21. My step dad had it and passed it to all of us. And that was like, what, 7 years ago I think. Seven, yeah.

At first I was living at my late mom’s house with my step dad. And I guess my step dad got it and then he spread it to all of us, even to our kids. Probably like 12 of us, plus our babies. And then we got treated and then it came back. Now my daughter’s 9 years old, and she’s treated too right now. I wish I could have just finished my medicine in the first place. I didn’t take my medicine when I had it first time. But they told me it’ll come back in the future.

NARRATOR: When TB returned to Talia’s circle, she was living in another town, working to upgrade her education. She’d been contacted by Shirley and Kelly, after their investigation had led them to Talia’s family home.

Shirley: It was a previous outbreak house. And we did our contact investigation, we did interviewing of the household members, but there’s one person we could not get a hold of because she was going to school. And you know, we kept trying, we kept trying in the next few months. Then, wouldn’t you know it, she’s smear positive.

Kelly: I know I did manage to get ahold of her, and she needed to go to the lab. But that one was, that was one of the tough cases too.

Shirley: The thing with her is, um, when we couldn’t contact her and we had to do a referral to um, let TB Control know she was going to school in Flin Flon, and they contacted her, the provincial parts. And she was really um – she was really challenging in a way that she didn’t want to give any information out. Uh, and she knew all about TB. 

The day she had come home, um, she was aware that we were going to interview – we went to her place, within a half hour she bolted and she was on home isolation. So we’re searching for her all over town (laughing), she ended up in school.

Kelly: There was a gathering at the school and we found her there. But we didn’t – they said ‘No, you just missed her, she left again.’ So we had to go chase her down at somebody else’s house [laughing]

Shirley: And she was very – it was – she was very, very angry for a while there. Wasn’t – it – it was really challenging and it took constant work for the TB workers, especially Kelly, to get her on board and – she fought tooth and nail.

NARRATOR: Talia’s reaction, however, was understandable. A surprise to begin with, the infection also proved unpredictable.

Talia: Well, I never felt anything at first. I never really had symptoms, just that night sweats thing. But when, when I found out that I had TB, I started realizing, like, what happened. And I thought that was like hangover sweats, because I drank too much. But that, I guess that was night sweats.

And, usually people, like I see my cousins and my brother, that go real skinny. And that never happened to me. I just gained weight and I was still normal. All my siblings are getting treated, except my brother. And I lived with my brother — we lived together at the house, when I came home — and yet he didn’t, he didn’t get it.  And everybody else that I wasn’t — don’t live with, got it. And the people that I was hardly around are getting treated.

NARRATOR: Adding to Talia’s frustration – the embarrassment that can come with such a diagnosis.

Talia: And I’m ashamed of it: ‘cause people don’t understand, like they can get it just like that. But when I try and explain people will be like, “No, get away from me. You’re going to give me TB.” Like, you know? It’s so embarrassing. Or,my daughter — “No, she can’t visit. She has her mom, they have TB.” Like, you know? When I go to work I always tell them, like after work I’ll go over there, you know? Or when I have visitors don’t come in. I know it’s really risky to get it, but if you’re treated then you can’t pass it on. if they were more educated about it and if they had it, they had TB and then they would probably understand after that. People don’t understand how, how it works. Like, you can’t get TB from somebody who’s getting treated.

NARRATOR: But it’s the toll TB’s taken on her family that’s affected Talia the most. 

Talia: My mom passed away of TB.  Three years ago. When I lost my mom, she didn’t take it — this medicine — and it ate her lungs. Her lungs filled. ‘Cause she was drinking all the time. And they didn’t work for her, I guess. And some medicines won’t work if you drink. That’s what happened to my mom. She never took care of herself and she drank all the time, and she never took her pills. And it, it didn’t even take long and she passed away.

NARRATOR: Yet the story of what led to the death of Talia’s mother is one all too familiar to northern First Nations, where a complex interplay of socio-economic factors can undermine adherence to TB treatment.

Nnamdi: There were challenges, um, within the outbreak management and one of them was really around the treatment adherence piece. We do put in a lot of effort particularly through the, um, TB workers, but within this outbreak setting we do see right off the bat, it’s always an ongoing challenge. There are various reasons including side effects of the medication or even, um, the treatment regimen or TB still being stigmatized and, um, the transient nature of the population that we are serving.

So, there are several factors, including substance use and also homelessness. So when the TB workers go there for delivering the meds, they are just nowhere to be found. These are real challenges that we do face and when treatment is suboptimal then there’s always that risk of either transmitting the disease to another individual or even, um, that individual might stand to risk for reinfection. So using incentives will be key.

NARRATOR: But for Talia, nearly quitting treatment wasn’t about transiency or substance abuse — it was stigma.

Talia: But I’m just ashamed that I have to take medicine. I just thought that taking medicine was normal, to not have it anymore. But then when people started saying, “Ah, TB, get away’ and they — I got ashamed of it. To the point that I say I’m not taking them anymore. This was not too long ago.

But my worker talked to me, “You’ve got to take it or it’s going to come back and it won’t work”, stuff like that. And I said, “I don’t have symptoms. I’m just going to quit.”

But then I just kept on taking them because I don’t want to get sick in the future when I get old. The doctor told me too that if I don’t take it, it won’t work in the future and I can get real sick. I don’t want that to happen. And what if I get it in the future and I have grandkids and, you know what I mean?  

Kelly: She needed to drop out of school, so her funding was cut and then because her funding was cut, she wasn’t eligible for social assistance for three months. So we got her by on gift cards. She probably would have went hungry because she used them to buy food.

Shirley: And she’s quite the resourceful girl. She was offering cleaning house services, she was offering what she can to get that little extra help, or else moving things. You know, she was trying to make that little extra cash for herself.

NARRATOR: But Talia isn’t the only TB-affected individual supported by NITHA. With many clients fighting an uphill battle to complete treatment, NITHA staff have figured out how “a little can go a long way” towards keeping people on track.

Shirley: We provide lots of gift cards from Northern Inter-Tribal. As soon as there’s a challenge in somebody taking their meds or else coming to clinic, we provide incentives, and that seems to help out quite a bit. It really reinforced the importance of uh, making certain that we’re – we support the clients. At the end of June we decided we were going to recognize the people who took the initiative and took the meds, we had a barbeque for them, with gift prizes and things like that.

Kelly: So we had a lot of people completing then. So just, like, as a thank you for being compliant, just using the gift cards as a thank you.

Shirley: They were really appreciative, I found, of that, eh? I think it’s very important having that good relationship. We just need to have the health care providers to be approachable and to have a good trusting relationship with them.

Kelly: Trust was number one because they feel a lot of shame and they want to be private so you’ve got to reassure them that you’re not sharing their information with anybody and communicating with only the people that we need to. Yeah, just keeping in touch all the time.

Shirley: Personally, I think each case is unique: I don’t think there’s anything that could make it smoother, because of that uniqueness.

NARRATOR: And in her case, Talia continues to champion treatment, eight months after she began. Treatment she stuck to despite her loss and sacrifice.

Talia: I was going to school, post-secondary program; in Creighton, in Northlands. And that was in March. Then I had to quit school to come home to take my medicine. For treatment. And I started my dose on March 6th and I won’t be done ‘til end of December.

It sucks taking pills. I don’t like it. But I have to. And I wouldhave been done school, everything, my program. But now I just said ‘Never mind: I’ll just take care of my health first’.

When I’m done my medicine I’m going to go to school and finish. And I tried to encourage my siblings and my daughter, ‘You have to take medicine or you can get real sick. And you don’t want to get sick. You know how it is.’ And they’re like, ‘Okay.’ And then they’re taking their medicine. If I quit my medicine, it’ll be like it’s okay they never took it.

TB was in my life long. Like, I lost my mom and I lost my grandpa. I had TB and I had to quit school. You have to get checked before it’s too late. Because it can just eat you inside and out.

Shivoan: That was episode 3 of our 4 episode series of TB Talk, season 2 – A Community Outbreak Story, narrated by Rick Harp. On our next and final episode, we’ll take you deeper into the ins and outs of a community TB outbreak response, and hear directly from program staff about lessons learned from this outbreak, and what they think is needed to finally eliminate TB in northern First Nations.

We’d like to thank our partners on this series, the National Collaborating Centre for Indigenous Health and the Northern Inter-tribal Health Authority. I’m Shivoan Balakumar, and thanks for listening to NCCID’s TB Talk.

Music on this podcast is ‘Drone Thistle’ by Blue Dot Sessions, via Creative Commons license (CC BY-NC 4.0). Learn more at https://www.sessions.blue/.

Production of this podcast has been made possible through a financial contribution from the Public Health Agency of Canada, but the views expressed here do not necessarily represent those of the Agency. The host organization of the NCCID is the University of Manitoba. Learn more at nccid.ca.