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TRANSCRIPT
Shivoan: I’m Shivoan Balakumar and this is TB Talk, an audio series by the National Collaborating Centre for Infectious Diseases.
For our second series of TB Talk, we partner with NCCIH, the National Collaborating Centre for Indigenous Health, and NITHA, the Northern Intertribal Health Authority, to take an up close and personal look at the story of a TB outbreak in a small First Nation in northern Saskatchewan.
We spoke with TB survivors, a community TB Worker, a northern TB Nurse, and a Medical Officer of Health. They share their experiences and offer insight into the challenges and lessons of the province’s outbreak response.
Our first episode takes us back to the beginning — the story of how a young adult fell through the cracks of a highly-taxed health system to become what’s known as “the index case.”
NARRATOR: In December of 2018, the Northern Inter-tribal Health Authority of Sakatchewan received notice of an active case of Tuberculosis: it required an immediate contact investigation to determine if any others had been infected. What that investigation revealed over the following weeks and months was what was most feared by Saskatchewan’s TB program: a full outbreak of Tuberculosis had spread in the community and would require a large collaborative public health response.
Dr. Nnamdi Ndubuka, a Medical Officer of Health with NITHA, describes the outbreak.
Nnamdi: It was severe from our assessment because we reported eight cases within the outbreak period between December 2018 and June of 2019. And from those eight new cases that were reported, there were over 135 additional contacts that were identified. Seven new cases were identified from the single index case and over 41 latent TB infections was also reported within that time. There were more male TB cases than female – about 75% – and age group that were affected were mainly those aged 25 years to 34 years old.
NARRATOR: That index case was a quiet, kindhearted young man named Ashton.
Ashton: TB came to my life when I was 23.
NARRATOR: Ashton had no living parents, no fixed address, and often moved between his home community and other neighboring communities. An avid fisher, he had only a few close friends. He was reluctant to share his suffering.
Ashton: My stomach was hurting quite a while; like six months ago from when I started feeling the pains in my stomach. It hurted a little and I didn’t know that I got it, ‘til I was coughing like a little bit blood. I didn’t know at the time what it was ‘til I got worse and started losing weight. I was only, um, 98 pounds.
NARRATOR: To help numb his pain, Ashton used alcohol. He couldn’t seem to access the care that he needed. He tells us when he finally decided to seek medical attention.
Ashton: No, I didn’t bother coming ‘til I, uh, got worse; because I was, I was keep on drinking that time, to take the pain away from off of my stomach. And it got worse and I finally came to the health centre. Um, I got, came and got drove to here; because we phoned first and, ‘Yeah, come bring him in the emergency.’ So we went in the back. Yeah. And first they took my weight and took some of my blood, and they sent it away.
NARRATOR: Prior to his diagnosis, Ashton’s friends actually tried to bring him to the local community clinic on two separate occasions. Both times, Ashton was sent home with over-the-counter pain medication. Dr. Ndubuka and Shirley Nelson — a TB Nurse with NITHA — share the other factors that might explain why Ashton’s TB was not picked up sooner.
Shirley: He didn’t have the classic symptoms of TB. He wasn’t coughing, he wasn’t having night sweats, that we’re aware of. He presented with severe abdominal pain. And so, that “think TB”, wasn’t on the minds of the health care providers at that time.
Nnamdi: During the outbreak, there were two cases of active smear-positive TB, which really is an indicator of late diagnosis. They shared common risk factors: their transient nature, they were young adults, they were involved in alcohol use, they smoked cigarettes or marijuana and had a very high degree of sociality.
The reasons for the delayed diagnosis here for these particular individuals were homelessness and the fact that they actually slept all during the clinic regular hours when the household beds were readily available. And for this reason when they, you know, clients make several attempts to seek healthcare during those irregular hours they will be turned back – if it is not an emergency, right? So for those reasons the infection continued until a time when there was a second attempt or third attempt to access care and eventually they made it to the clinic. And, in that condition, they became symptomatic and were admitted into the hospital and diagnosed appropriately as TB. So these are really real-time issues that we faced in the setting of this outbreak.
NARRATOR: The health care centre in Ashton’s community is not equipped to appropriately manage a person with a newly confirmed active tuberculosis diagnosis. As with so many northern communities in Saskatchewan, local residents must commute for several hours to larger health centres in Flin Flon, Manitoba or Prince Albert, Saskatchewan for health emergencies involving complex conditions or diseases. Ashton told us about when he first found out that he had active TB.
Ashton: I was losing, losing weight — a lot. And, and they sent me to Prince Albert and that’s when they took some of my blood and they told me, “You got TB.” They took a sample of my blood and they told me, in Prince Albert, I had it then. TB. I almost cried.
NARRATOR: Ashton’s diagnosis initiated a public health response and contact investigation, supported by NITHA and Saskatchewan’s TB Prevention and Control Unit. While Shirley Nelson and a few other TB nurses managed the response, the heavy lifting was handled by a local community TB worker, Kelly. Here she is with Shirley on the moment they first learned of Ashton’s TB diagnosis.
Shirley: What we knew was this guy was so sick in the hospital, really, really sick, and we heard he was not liking being in the hospital. Even though he was really, really sick.
Kelly: We didn’t know he was living in town. But when we did find out he was sick, I didn’t know – I felt lost, I didn’t know where to start because I knew he didn’t have parents. I didn’t know who he was living with or where he all stayed. It was something.
Shirley: Where he stayed was not really…he didn’t have a primary residence. This was a place that he was staying at and so we – that was our initial – where we initially started our contact investigation was from that household. I had no idea how big it was going to be until the time came. And we started the investigation and we kind of like, oh my. This is going to be a big one.
Kelly: That was after the first home visit that we realized that it was going to be big.
NARRATOR: With no place to call his own, Ashton moved around. One such home was that of his friend’s grandmother, Maryann. He would have lots of company.
Shirley: Maryann, she described herself to me as ‘The Old Woman in the Shoe,’ ok? The size of the house is a three-bedroom house: one bathroom, kitchen, living room and a back porch. When I did the interview, there was, like, during that period, there was about 24 people that stayed in that household, majority of the time. And definitely more than three days in a seven-day period.
‘Cause she was raising her grandchildren — her daughter had passed away quite a few years back — and those grandchildren had children, so they were staying in a house. And at one point, there — one of her sons was staying there with his family too. So there was uh, a lot more families, little, smaller families staying in the home. Uh, not everybody stayed there at one time, because some would go to other relatives’ place, because it’s part of the culture to, as little cousins, to go sleep at your aunt’s or uncle’s or you know, other relatives. People tend to sleep in shifts. And that’s the reason why some people tend to sleep at other relatives too during that period.
NARRATOR: Like the other temporary residents of Maryann’s home, Ashton too found himself staying at other peoples’ places, unknowingly exposing them to tuberculosis.
Ashton: I was at my friend’s house with his girlfriend. They adopted a boy and that’s where I slept most of the time. Friends go there and visit for a while and they leave, come visit for a while and they leave.
Shirley: Crowded housing: that’s one of the challenges. Um, because not everybody stays in that one house at all times. They’ll sleep at different houses. So they’re moving from one place to another. it makes it a little more challenging because that puts more households at risk if they’re an active case.
NARRATOR: This perfect storm of delayed diagnosis, high mobility, and overcrowding created ideal conditions for disease spread through the community.
Nnamdi: This really resulted to a lot of work for the TB team in the community and also for ourselves here at the Northern Intertribal Health Authority. And there was a lot of resources that went in both, in time and human resources, um, in terms of planning and responding appropriately and ensuring that the outbreak was addressed and further new cases were averted.
NARRATOR: Three weeks into December, Shirley and Kelly’s contact investigation begins. By this point, Ashton was in isolation in the Prince Albert Hospital. His stay was long and difficult.
Ashton: Almost a month. And I wanted to leave. ‘Cause I wanted to come home.
NARRATOR: As Shirley explains, a large effort went into keeping Ashton committed to hospital isolation, 400 kilometres away from his friends and family.
Shirley: There was a lot of partnerships involved when he was in the hospital. TB Control and then there was also TB Advisory and NITHA. They were all involved. And so, they were trying to come up with a plan, and – what would be the best way to help him stay in the hospital. And one of the things that helped him stay, they had given him, from NITHA, a tablet so he could be entertained while he was in the hospital, and another thing that uh, they did was try and arrange for his friend to come and stay in the city. And that was really kind of complicated too because there wasn’t a lot of buy-in for that because he was a young man . He didn’t need any escort or anything like that.
NARRATOR: While Kelly and others tried to encourage Ashton to invite members of his family to visit him, Ashton resisted the idea.
Kelly: He only has his brothers I think – I think he has, like, seven or eight brothers and a sister. But he also didn’t want them to know. He said ‘Nobody cares about me.’ So they don’t need to know.
Shirley: He felt ashamed. He felt ashamed and he felt bad that he was spreading the disease to other family members.
NARRATOR: Eventually TB Control and NITHA managed to send Ashton’s friend to Prince Albert to keep him company while he was being treated in hospital. But as Kelly explains, Ashton’s desire to return home remained.
Kelly: His friend called and said ‘Ashton doesn’t like it here: he wants to go home.’ He doesn’t like being in isolation. And he tried his best to make it look like he was feeling better, but he wasn’t. And when he did finally come home he was still really sick; like… he should have been in the hospital for a while before he came home, but….
Shirley: Hospitalization tends to be a really difficult thing for someone from the north going in for extended period of time in the hospital. It’s really challenging for them. Because they don’t have, number one, the supports that they need. And number two, they, you know — anything will help them out, as long as they have those supports, know that they could rely on somebody.
NARRATOR: As noted, Ashton’s condition was far from ideal upon returning to his home community. The shame and stigma of TB in northern First Nations continues to be a challenge: memories of forced removal, TB sanitoriums, and mass graves still linger from a not-too-distant past. Not to mention, confidentiality is particularly hard to come by when returning home to a small community.
Ashton: Felt like they knew already, because I was in the hospital and everybody knew. It was kind of a little bit embarrassing still. Because it, some people say it’s contagious. You can pass it around to other people. People wouldn’t come near me too. That’s why I wanted to stop the meds, TB meds. I just stayed home: got worse again.
NARRATOR: With Ashton’s mental and physical health deteriorating again, Kelly went above and beyond to support his recovery.
Kelly: When he came home from Prince Albert, he was home for a couple of weeks. But then he kept calling me saying I don’t feel good, I don’t feel good…. his food is going right through him, he couldn’t keep it down. So I kept calling. I was always on the phone with TB control in Saskatoon. Like, letting them know how he was feeling. I ended up having– to bring him in after hours and the doctor wanted to send him to Saskatoon. And that’s where we had the trouble with him too. He didn’t want to go. He wanted help, but he didn’t want to go far out of town for help. He didn’t want to be alone. Like, it took us a few days to send him out. He kept saying no.
And then, uh… I talked to him but then, I don’t know, I just – I cried. Because I felt like he was um, [crying]. I, I don’t know, I just felt bad. But… I don’t know. I just tried my best to talk to him and the doctor too was really patient with him [sighs].
Shirley: Like Kelly, she’s a strong advocate. She was there for him. So she knew that – he knew that he could contact her for support.
Kelly: We finally did get him sent to Saskatoon but he still kept calling from there. ‘I want to come home. Can I come home?’ I just felt really bad.
Shirley: Maryann was a strong advocate too. She was the one that encouraged him to stay there too. She wanted him to get better, encouraging him. And it’s the work with NITHA and TB Control and especially Kelly and Maryann that kept him in the hospital. They all worked together to give him as much support to stay in the hospital as possible.
NARRATOR: Supportive of Ashton’s two hospital stays — first in December, then again in January — his primary caregiver, Maryann, also contributed in other ways. The kind of assistance critical to the success of any TB program on-reserve.
Shirley: When we don’t have a champion like Maryann, we don’t get the number of contacts we need to do a thorough investigation so um, there’ll be people that are missing and will probably present at a later date. She was um, very important in this case that we – in a sense that we found out a lot more active cases than um, if we didn’t have her as a champion on our side.
She gave us all the names of who was there. Plus she gave us where this kid hung out. She knew where he hung out. So that gave us an in to those other homes. And when it came for testing and things like that she was like the kokum that said ‘You get that done!’ [laughing]. ‘You get that done.’ And so we didn’t have too much fight from the kids and the adults, she was the one that make certain you get it done. You guys got to get it done. You know. She was always there to help us out.
Kelly: She was really good with the x-rays too and we just – we came up with a schedule, like which kids are going to go this day and who was going to take them and then she figured all that out. And then she brought them, like, made sure everybody came into the clinic.
Shirley: In some cases where you try and champion somebody else, it’s a lot of trying to develop that relationship with that client. It’s also dependent on the relationship that TB Worker or the community members have with that family. And how comfortable they are with that family.
So, in some cases, it is a lot more work and it’s a lot more trying to develop that relationship. I find with most TB Workers, they know their community and their community members inside out. So sometimes I have to be reliant on TB Workers as to who this person hangs out with. Whereas Maryann gave me all that information and we were able to work with that.
NARRATOR: With his team behind him, Ashton managed to remain in his Saskatoon hospital room. His condition began to improve, and was eventually well enough to return home.
Kelly: Because he wasn’t absorbing his meds, because of the diarrhea and the TB being in his stomach, so they kept him on constant treatment seven days a week, and he started feeling better. He just came around.
NARRATOR: Treatment for active TB is a long and arduous journey, and can last from 6 months to a year. Here’s Ashton on how his treatment went after he returned home.
Ashton: It was quite a while when I left, then they finally bring those pills over here and I started taking them. I was feeling like kind of little bit better.
NARRATOR: By spring, over four months into Ashton’s treatment, Kelly and Shirley could see he was on the mend.
Shirley: When I noticed him starting to feel better and I think a lot better was more in the spring, right? You know, when the fish run, and he was out snaring fish so he sold me [laughing] some fish. That was his little way to get a little cash for himself too, was fishing and that’s when I knew he was really starting to feel better.
NARRATOR: With his TB journey nearly complete, Ashton reflects on the most challenging parts of his experience.
Ashton: To tell anybody, everybody. That’s the hardest part. It’s kind of a little bit awkward too, to say it. I don’t know, I don’t say anything to them — and they won’t understand it totally. Kind of a little bit embarrassing. Nobody wants to come near me. They don’t come visit me anymore: that’s up to them.
NARRATOR: Despite strained friendships, Ashton remains in good spirits. He continues to venture out of town, and explore his surroundings. He still loves to fish and even bring his catch back to sell to locals and visitors alike.
Kelly: He was really quiet at first. Like he never wanted to talk. Like, he wouldn’t even tell us how he was feeling. He would just, like, have his head down, be really quiet. But now, he’s really comfortable: it’s easy for him to tell me how he feels.
Shirley: It took a lot of time in trying to develop that relationship. And once it was there it was, like, now he could throw a joke at me – and I’m just like, ‘Ooh, OK!’ [Laughing].
Ashton: I’ll be done October 16th. I’ll be done. Done over with. Yeah, it’ll be good.
Shivoan: That was episode 1 of our four-episode series of TB Talk, season 2 – A Community Outbreak Story, narrated by Rick Harp. On our next episode, you’ll hear the story of another TB-affected family in this outbreak, a young mother and her 4 year old son.
We would like to thank our partners, the National Collaborating Centre for Indigenous Health and the Northern Inter-tribal Health Authority for their contributions. I’m Shivoan Balakumar, and thanks for listening to NCCID’s TB Talk. Music on this podcast is by “Blue Dot Sessions”, which appears under a Creative Commons license. Learn more at www.sessions.blue.
Music on this podcast is ‘RemsenTAL’ and ‘Our Only Uplift’ 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.