Sandra Alba is an epidemiologist at KIT Royal Tropical Institute in Amsterdam. She trained as a medical statistician in the UK and soon after moved to Tanzania to complete a PhD program on access to malaria treatment. For the past 15 years, she has applied statistical and epidemiological methods to evaluate public health programs in low- and middle-income countries. Her research focuses on data quality and good epidemiological practice - specifically the interplay between research integrity and fairness in multi-disciplinary international research collaborations.
Dr. Amera Khan is the Technical Officer at Stop TB Partnership in Switzerland whose goal is to reach TB-affected people and communities wherever they are to create innovative and new solutions for affected populations.
Episode Description
Pop stars are often involved in raising the visibility of public health issues. Elton John is one obvious example for his work on HIV/AIDS. Rarely, though are pop-stars involved in gathering public health stats. Ugandan pop star Bebe Cool is the exception and his work to combat tuberculosis is a focus of this episode of Stats and Stories.
+Full Transcript
Rosemary Pennington
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Pop stars are often involved in raising the visibility of public health issues. Elton John is one obvious example for his work on HIV/AIDS. Rarely, though, are popstars involved in gathering public health stats. Ugandan pop star Bebe Cool is the exception and his work to combat tuberculosis is a focus of this episode of Stats and Stories where we explore the statistics behind the stories and the stories behind the statistics. I'm Rosemary Pennington. Stats and Stories is a production of Miami University's Department of Statistics and Media, Journalism and Film, as well as the American Statistical Association. Joining me is regular panelist John Bailer, emeritus professor of statistics at Miami University. We have two guests joining us today on the show. Our first is Sondra Alba and the second is Amera Khan. Alba is an epidemiologist at KIT Royal Tropical Institute in Amsterdam. She trained as a medical Statistician in the UK, and soon after moved to Tanzania to complete a PhD on access to malaria treatment. For the past 15 years, she has applied statistical and epidemiological methods to evaluate public health programs in low and middle income countries. Dr. Amera Khan is the technical officer at stop TB partnership whose goal is to reach TB affected people and communities wherever they are to create innovative and new solutions for affected populations. They, too, recently authored an article for Significance about a TB program in Uganda that relies on Bebe Cool to get the word out in America. Thank you so much for joining us today. I'm just sort of curious, how did a pop star get involved in gathering TB stats?
Amera Khan
Good question actually, it goes back to his personal life. He lost a sister to TB. So this is something that he's been quite passionate about. And I think when he gained fame, he really wanted to use that fame to support the cause to help others who are in similar situations. So he attended actually, a couple of our high level meetings, were actually the Stop TB partnership as part of the UN. So he became a TB ambassador, for us to spread the word and my organization Stop TB partnership, in addition to supporting these TB ambassadors, and these TB champions, we also provide innovative funding for organizations to conduct projects that can find TB, using either an innovative technology or innovative approach. So his organization Amber Hart, applied for one of these, suggesting that they would use an innovative approach of using his music and his fame to spread the awareness about TB and hopefully, find more people and treat them.
John Bailer
This is, this is great, you know, I want to thank you for introducing us to Bebe Cool, I ended up watching a video or two of his music videos as well as a visit that he had to some families who have been impacted by this and, and kind of, you know, celebrating the connection that those families had and the support that they had for one member of their family that was trying to recover from TB. I think one thing that would be helpful, especially in a program like this, is to take that step back and say okay, let's, you know, talk about what TB is, you know, in sort of broad strokes? And why is it such a broad glass? Is it such a serious concern that there would be a special program within the UN that's devoted to addressing it?
Amera Khan
So, TB is caused by a bacteria called mycobacterium tuberculosis, and it's actually an ancient disease. It's been around since the time of the mummies, but it's actually still one of the world's leading killers by infectious disease. So until COVID hit, it was still the number one killer by infectious disease in the world. COVID surpassed it, but I think TB is now back, unfortunately to number one. It's not something we're proud of, but it is the case. So it is a huge public health concern around the world, particularly in lower income countries where there's other challenges that make the population more susceptible to TB. And just too quickly on it's airborne spread person to person so that's why it makes it a big public health concern because it's a bit difficult to control.
John Bailer
I know that within the communities that I'm aware of in the In the US with TB, there's often this connection to congregate living in very, very tough living conditions. And there's, it's a pretty serious challenge to treat this just because of the regularity of medication that's required. Yeah, the last thing you want is something that's going to be resistant. That exactly would emerge from this. You know, when I looked at case fatality rates, that when you're talking about, you know, 14%, that was, you know, as part of the story that you're telling, that just was, was shockingly high, I mean, for me, as I read this, you're looking at something that's relatively common, I mean, the incident rate is also quite high. But then, you know, with that incidence rate of 2.2, per 1000, roughly, it seemed, then with this kind of high fatality rate, it's clear. So where's a lot of the work for, you know, the program that you all are involved with? Where's it around the world? Tell us about some of the places that it's done, and maybe some of the programs that you've been involved with.
Amera Khan
So for us, because we tend to see the high rates in countries in Asia, in Africa, those are mostly where our programs will take place. We've got some pockets in Eastern Europe that also have high rates of TB and a few in South America. Yeah, I mean, the numbers are staggering. And in a lot of the Western countries, people forget that TB still exists. But in some of these other continents, it's quite, quite staggering.
Rosemary Pennington
So what kind of data has Bebe Cool been helping you gather? And sort of what insights has it provided to TB and Uganda?
John Bailer
You're always about the data, you know, it's always the data analysis.
Sandra Alba
Yeah, maybe I can say something about that. So actually, TB reach has quite a standardized, we say monitoring and evaluation framework. So that's a bit of a technical term to say, a standardized way of collecting all the data that is then analyzed to evaluate the performance of a project. And there's two types of data that are collected and reported on and Bebe cool as project manager for this project he had in Uganda helped gather and manage these two types of data. So one of them is what we call the process indicators. So it's really about data regarding the project and how it's being implemented, and how many people they managed to screen for TB. But that's the first thing to be done. And that can be done with questionnaires normally, so it's about asking, yeah, have you about the coughing and the night sweats and things like this? Yeah, screening people who may be affected with TB. So that's like, the first thing that we look at, and that he collected in the different interventions that he implemented to get, you know, the different projects implemented where, but one of the things he did in the beginning before COVID hit was to train people for TB in his concerts. So he would already as an artist, he performed, of course, music, live music, and concerts. And so one of the things that he did was to then have trucks set up outside his concerts, to screen people for TB and refer them to public health facilities, where necessary, if they turned out to be, you know, positively screened, and then during the concert, he would raise awareness for this and, you know, say, you know, have you been coughing? Are you not feeling quite right? Well, out there, you know, go get screened. So that's, unfortunately, he couldn't continue doing this as much as you would have wanted to do because COVID hits, and there were a lot of restrictions all over the world, including in Uganda, where it was, the response was quite strict, but as as, yeah, this was really one of those innovative approaches that that have so much potential. And so yeah, back to the question about what type of data you would collect? Well, you know, he would collect the number screened outside in this TB truck. And then the whole team where we call the whole TB cascade that then follows from that. And that would be data then collected in health facilities, because of course, this was all linked to the national TB Control Program. So then we would know, you would be able to then collect this whole cascade of how many were screened, how many were presumptive. So you know, came out to be kind of positive from the screening, and then how many would then be tested? With a, you know, the TB as well smear tests are usually that are done and how many would be done laboratory confirmed how many would have laboratory confirmed TB? How many would not be laboratory confirmed, but still with a very high suspicion of TB. So we call those like all forms, cases of TB and then very importantly, how many would start treatment and how many would complete treatment? Because ultimately, that's what you want. You want all the people who are positive to then be on treatment, as you said earlier, John, it's a very long treatment at best six months. And then at worst, if you have a drug resistant strain of TB, then it can be a nine month treatment. So it's very long, and ensuring that continuity, ensuring completion, is then a very difficult and challenging part. And so we need all the data to be able to follow that up and then see, okay, was this a successful strategy, a successful way to look out to look for patients and then ensure that they get the treatment that they need? So this is an important part of the data, or he facilitated the collection of.
John Bailer
Yeah, so you were describing kind of this one sort of stream being process indicators that were going through there? Where were you talking about? What's the second part of that?
Sandra Alba
The other stream of data then is the TB notifications data. And that's also a really important source of data that all TB reach grantees need to collect and report to us. That's really national official data. Um, so it's the TB cases that have been within their notice. It's a notifiable disease, it's, you know, a public health concern, so it needs to be notified. And so these TB notifications at national level, and then at sub national level, because of course, he implemented his activities in certain parts of the country, he was very strategic about that, he implemented his project, where he knows that he has followers where he knows that he is famous, which is, you know, smart, because that's then where people are likely to respond to his type of engagement that he created, he creates. And so he would send us the TB notification, data national level, but also at sub national level in the areas where he knew that he had implemented his interventions. And the idea is that we would then follow these notifications over time and then see, okay, since, you know, that seems to be cool has done his intervention, then we see really an increase in notifications. And in that case, that's a good thing, actually, that the fact that he would increase for TB is a good thing, because it means that he has found more cases of TB, it's a bit counterintuitive, because you might want you might think, oh yeah, where TB has decreased. That's where he did a good job. But now here, the thinking with TB is that there's a lot of people who are out there who are sick, but are not getting the treatment that they need, and therefore they are spreading their. That's a contagious disease, of course, they may be spreading TB. So here with TB Reach, the idea always when evaluating projects is to try and assess where the project was able to lead to an increase in Notifications, meaning that they were successful at finding cases. So yeah, we use these two sources of data, the process indicator is to really look at, have a deep dive at the actual project and what cases the actual project was able to find and to put on treatment. And then the other source of data is an external kind of, you know, validation data from the National TB control programs or from the health system, to look at notifications and any potential impact that the project would have on notifications,
Rosemary Pennington
You’re here listening to Stats and Stories. And today we're talking with Sondra Alba and Amera Khan about combating TB. So TB, you mentioned, is sort of risen back to being the number one killer. And yet, I would argue probably in the United States, a lot of people don't know that. And I wonder sort of what challenges you face in doing this work and combating TB, and what might be done to sort of raise its visibility, I guess, as this public health issue, outside of the context you're working, because I imagine like, it would be helpful if other people knew what was going on. And this is truly the problem that it is.
Amera Khan
Yeah, you know, we try and advocate for more TB resources, because that's really where we're struggling. It takes a lot to get a person to find a person and put them on treatment and to follow them. And many of these countries either that have high rates of TB, either lack access to the diagnostics, or even for the people who are most affected within this countries, they lack access to care, like it's difficult to find a center that can diagnose them properly, treat them properly. And so we really struggle with appropriate amount of resources for TB. And then the other interesting thing with TB is if you look at COVID, it took one year to develop a vaccine. And there was a big amount of push around the world to find treatments and vaccines and how to prevent it. TB, we have a vaccine that's over 100 years old that we're still using and it's actually not even that effective of a vaccine. So we certainly need more, easier-to-use diagnostic tools as well as shorter treatment as Sondra had mentioned it can be six to nine months treatment. So that makes it challenging for people to complete their treatments. And then the other thing we face is stigma. So I think that's a huge barrier within countries people struggle with letting people know they have the disease. They don't you know, they don't want people to know because it is transmitted. or send a person through the air. So there's always this concern that someone might shun them from their community from their workplace. So there are lots of real challenges that we face with TB. And, again, it's affects countries around the world that tend to be lower income. So I think we struggle with getting the resources and attention from the countries that may have more resources that they can contribute to,
John Bailer
You know, I, you sort of answered one of my questions before I asked it, which was the sense of, you've talked about kind of the success of some of the programs isn't up an uptick of reporting, sort of this increase? And then I was gonna ask about kind of, then well, what about prevention? And it sounds like that one part of the prevention strategy is an updated vaccine, perhaps or more effective, you know, sort of investigation research into improvements in vaccine technology. I mean, clearly, COVID was that, you know, we had this as a story on Stats and Stories a number of years ago, was the number of days from when the this was, this disease was mapped to when a vaccine was available was, was like, you know, the equivalent of a moonshot. It was just phenomenal progress on something very quickly. And it seems like this is an opportunity for something like this to occur again. I really liked this, you know, when you talked about the stigma here, that seems like that's part of one of the things that I could imagine some of your research efforts are trying to address. And you know, maybe cool as, as part of his concerts by doing that was kind of saying, hey, you know, this, this popular pop singer is celebrating, you know, kind of, say, Look, this is something that's important. We need to get this out there. And one of the, you know, is YouTube videos, he's visiting there and saying, Look, you're, you know, this is good that you're standing by your spouse who's TB, who has TB, you know, that your spouse is no longer contagious. There's been this course of treatment, it seems like you're you have to both battle that stigma, and with it battle, the ignorance that's often associated with it. So as part of the programs that you're looking at, you know, how do you kind of frame ways to try to address these issues?
Amera Khan
Yeah, for sure. I mean, it's a big part of combating TB, and we certainly Bebe Cool was doing it. I mean, that's part of his awareness campaign is to discuss TB openly. And that it is it can be a curable disease if you get on the appropriate treatment. So those are part of the messaging that we encourage our grantees to use. But also at stop TB partnership. Outside of this TB REACH Initiative, we also have another group that works on community rights and gender, and they really focus on programming to destigmatize TB within communities and to develop materials and trainings around that. So it is it is a big part of what we do overall at the partnership. But clearly, there still needs to be a lot more work done. And I think, you know, having people like Bebe Cool, and other artists and other famous people talk openly about TB in their experiences, can help.
Rosemary Pennington
We're gonna we talked about sort of TB status, as far as how deadly it is. But I wonder if there are other trends you see in the data about TB that you think we should be paying attention to, given sort of both of your work in in this area.
Sandra Alba
Now, we've been talking about COVID, for a while now in this conversation. And that's certainly and then we've also been talking about the data, we want to see increases in notifications. And that's a good thing. And that if you put these two things together, then the third thing that follows is the impact of COVID, actually, on TB notifications. And this has been really a big worry from the beginning and something that also with TB Reach and with TB Reach monitoring and evaluation, which, of course I was always an important topic, because one of the first things we saw happening when COVID hit was a huge drop in notifications. And so that was a big concern, of course, because it means that probably a lot of people who need treatment are not getting the treatment. And then you know, reasons for that, of course, and then you start then seeing the impact of lockdowns because what does it mean to have a lockdown, you want to control one infectious deadly disease, but this is coming at the cost of another of controlling another deadly infectious disease because people are not able to go and get tested and get well. It doesn't only apply to TB, of course, it applies to all sorts of other diseases, but we saw it very clearly with TB, we saw suddenly this decrease in notifications. And also, as we said, it's a six month treatment at the best nine months, often. And then yeah, these are people could not go to health facilities anymore, it could not be tested, could not sometimes continue their treatment. And so there we really saw the catastrophic impact of the pandemic. And that was a huge worry then also in terms of, you know, what is this going to mean for TB, for TB, for the spread of TB, and then people started you know, thinking of all sorts of things uh, yeah, so they're all staying at was because of the lockdown. But that means to have higher chances of infecting each other, maybe not of COVID, but then of TB. And you know, then all sorts of scenarios that are very difficult to evaluate, like, you know, is the lockdown going to be good or bad in the end for TB, in terms of transmission, but these are things that are very difficult to measure, of course, the transmission of these diseases, but certainly what we saw was a huge decrease in TB notifications in the lockdown months. And then in some countries, it led to that. This was followed by a higher peak, because there was a bit of a catch up, which, you know, may or may not be good, but still, there's some lost opportunities for timely treatment and therefore increased opportunities for transmission. And then in other countries, we did not observe this, you know, catch up period. So there it was only a loss. So I think in terms of Yeah, trends, the one that would have been very relevant in past years was this and also, yeah, very big concern.
John Bailer
Yeah, I could, well, imagine that, you know, having this lockdown with an additional kind of close quarter living, that one might expect a real uptick. And given what you were describing as this being sort of this number one cause of mortality, this killer, that's present in life, that this could translate into kind of part of that excess mortality that was described as part of COVID. 's impact is part of this additional TB infection. Is that part of that story of any excess mortality that's been observed?
Sandra Alba
Well I don’t know if it's necessarily TB mortality, but it could be of other other diseases, right. I mean, limited access to care has been an issue in many settings with these COVID lock downs. And I think some of the excess deaths that we see you get maybe also indeed, due to, you know, to that, but then of course, it's difficult to quantify.
John Bailer
Yeah. So one question is, you know, so what did you see as a result of Bebe Cool’s work? Have you seen this uptick in the reporting that you've described? As you kind of reflect back on kind of its trajectory, and its impact? What, what kind of things have you observed?
Sandra Alba
And I think about Uganda, as far as the data goes, you know, the time series that I have shows that indeed, it was one of those countries where we saw a huge dip in notifications in Q2 2020. So when the lockdown started, and then from the data that I have, it really stayed at a lower level than what you know, was there before. So really, we really see this impact of COVID, especially in the big cities, which is also where he worked in Kampala. And so I don't know what happened afterwards, because I only have, I think, a year and a year and a half of data. So I don't have the latest, you know, what happened last year, for example? And then finally, the trends went up again. But yeah, in terms of how we were able to, this had a big impact on how we were able to, to evaluate his project. And yeah, because he worked against the backdrop of, you know, a huge decrease in Notifications, which, in a way negatively impacted, at least stats wise, his project, but in practice, in terms of what he actually did and was able to do, and indeed, his, his attitude and his proactive attitude of finding other ways of doing things that we see in the in the process indicator data, and that he was really able to put a lot of screen a lot of people and put a lot of people on treatment, nevertheless, with his approach.
Amera Khan
You know, what was interesting is, unfortunately, he couldn't implement the project as he originally intended, because it was all about doing these concerts and getting people screened at these concerts using these mobile vans. But unfortunately, Uganda had a very strict lockdown. So he did, but what was pretty impressive was he really called me as his technical officer. And he's like, I need to figure out what to do, because we can't do concerts anymore. And so he did look at the data. And he's like, I think I still want to find people and put them on treatment. And so where are they? Where are they coming right now? What's happening? So he changed his entire intervention to really look at case finding at the local health facilities when people come in, so doing some cough, disk monitoring, screening, and also he looked at trying to find different people at these Boda Boda stations that Sandra can probably describe that a bit more when she gets a chance. So it was interesting. He did end up using his data to change his intervention so he could continue to find more people but unfortunately, those concerts that Sandra and I really wanted to go attend, had to stop because of the lockdowns.
John Bailer
Do you think he'll start it up again? Think we'll try to do this in future concerts as things lighten up some?
Amera Khan
I personally think he's still committed. I mean, this is something when we talk to him it sounds Like it's you know, obviously it's near and dear to his heart. I will say what was really interesting working with him was, I honestly didn't think he was going to be as interested in the data or in the day to day of the project, I thought he was just lending his celebrity to us. But no, he was on every phone call. He was the one looking at the data. He was the one that called us and said, Look, with COVID, I can't do concerts, I want to find more people and put them on treatment. I want to commit to what I had said I would do in a different way. So I was really impressed with that. And that attitude, so I can only imagine that he's going to continue. I know he's still continuing to put out some messaging in Uganda but, but hopefully, we'll continue to work on a global level with that.
Rosemary Pennington
That's all the time we have for this episode of Stats and Stories. Thank you both so much for being here today. Stats and Stories is a partnership between Miami University's departments of Statistics and Media, Journalism and Film and the American Statistical Association. You can follow us on Twitter @StatsandStories, Apple podcast or the places where you find podcasts. If you'd like to share your thoughts on the program. Send your email to statsandstories@miami.oh.edu or check us out at statsandstories.net and be sure to listen for future editions of Stats and Stories, where we discuss the statistics behind the stories and the stories behind the statistics.