Transcript
Fighting TB in Kids: A Discussion with Doctors without Borders
From vlogbrothers · Episode page · Watch on YouTube
· 1 h · 9,402 words · 77 timestamped sections
This is the full, timestamped transcript of "Fighting TB in Kids: A Discussion with Doctors without Borders", an episode of vlogbrothers published November 13, 2025 (1 h, about 9,402 words). It mentions 18 people, works and ideas, including TB, Doctors Without Borders, GeneXpert, MSF, TPT.
What is discussed, and when
- – 10:00: Doctors Without Borders, John Green, Ani Hernasari, Rakat Paduli Indonesia Foundation
- – 20:00: Doctors Without Borders
- – 30:00: Mozambique, Dr. Marama Makmood
- – 50:00: Dr. Huison
- – 1:00:00: Dr. Huison, Dr. Mariano
Notable quotes from "Fighting TB in Kids: A Discussion with Doctors without Borders"
Hello, hello, hello. Thank you so much for being here with us. We're here with folks from MSF, Doctors Without Borders, to talk about an issue that is close to MSF's heart and…
about Doctors Without Borders · atDamning when it comes to how we treat tuberculosis in kids. For those who might be new here, I'm John Green. I am obsessed with and in deep hate with a disease called…
about John Green · atSo my name is Anihnasari and I'm TB survivor in Indonesia and now I lead TB survivor organization called Rakat Paduli Indonesia Foundation and my story began in 2011. At that…
about Rakat Paduli Indonesia Foundation · atBest time to treat Regina? It was in August because she is living in a high bargain country like Mozambique.
about Mozambique · atThink that's a really important and helpful information. I want to turn now if I can to Dr. Marama Makmood who is the head of the I want to get this title right, program…
about Dr. Marama Makmood · atLives of people affected by TB. So, thank you so much for that. I want to turn now to Dr. Huison, Dr. Dr. Kathy Huison who I want to begin by asking well first I should…
about Dr. Huison · at
Who and what is mentioned in this episode?
People
- John Green — Person · 2 mentions · first at
- Dr. Huison — Person · 2 mentions · first at
- Ani Hernasari — Person · 1 mention · first at
We're going to start with a TB survivor and the mother of a TB survivor Ani Hernasari who was initially misdiagnosed which led to her having drugresistant tuberculosis and eventually she is a.
- Dr. Marama Makmood — Person · 1 mention · first at
- Dr. Mariano — Person · 1 mention · first at
- Anie — Person · 1 mention
Books & papers
- World TB report — Book · 1 mention · first at
Which is the deadliest infectious disease in the world, killing over, as of yesterday, when the World TB report came out, 1.2 million people per year. a slight reduction from…
Companies & orgs
- Doctors Without Borders — Company · 3 mentions · first at
- MSF — Company · 3 mentions
- Rakat Paduli Indonesia Foundation — Company · 1 mention · first at
- WH — Company · 1 mention
Products & tech
Concepts & topics
- TB — Concept · 5 mentions
- TPT — Concept · 3 mentions
- MDR — Concept · 2 mentions
- BCG — Concept · 1 mention
Places & events
- Mozambique — Place · 2 mentions · first at
Full transcript with timestamps
Hello, hello, hello. Thank you so much for being here with us. We're here uh with folks from MSF, Doctors Without Borders, uh to talk about uh an issue that is close to MSF's heart and also close to my heart, which is tuberculosis in in kids. So, for those who don't know, we um we've known what causes tuberculosis for about 140 years. And somehow in that 140 years, we still haven't developed a great test for kids. uh they struggle to often they they're not diagnosed correctly via microscopy. Often uh they are not diagnosed correctly by via gene expert test because they can't produce enough sputum and um and and so chest X-ray is a really essential tool but even that has its um shortcomings when it comes to kids and uh this is pretty shocking to me. Uh also we don't invest much uh of our research dollars into kids. So, I met with someone recently who told me that when their kid got TB, they had to
crush up the pills and then kind of kind of divide them into thirds and put them in sugar water and every day for months and months and months in order to get their kids appropriate treatment. That's starting to change, but that was the standard of care for a very long time. Um, and I talked to someone who if in the US who got TB in the 1940s, and that's how his mom uh treated him. And so we're talking about a delta there of 85 years. And uh I think that's pretty damning when it comes to how we treat tuberculosis in kids. For those who might be new here, I'm John Green. I am obsessed with uh and and and in deep hate with a disease called tuberculosis, which is the deadliest infectious disease in the world, killing over, as of yesterday, um when the World TB report uh came out, 1.2 million people per year. a slight reduction from the year before um which is progress but but slow progress and we're seeing even
slower progress when it comes to TB and kids. So I thought this was an important moment to talk with some experts uh at Doctors Without Borders about TB and kids generally and what um what uh can be done and what is being done. So, we're going to start with um a TB survivor and the mother of a TB survivor uh Ani Hernasari who um was initially misdiagnosed uh which led to her having drugresistant tuberculosis and eventually uh she is a two-time tuberculosis survivor if I'm not mistaken and also her kid lived with tuberculosis. Um, so Anie, I wonder if you can just start by giving us some broad outlines of your own experience with TB both uh as a patient and as a as a parent and about your path toward diagnosis when you were pregnant.
Yeah, thank you so much John Green and thank you so much for the opportunity. So my name is Anihnasari and I'm TB survivor uh in Indonesia and now I lead TB survivor organization called Rakat Paduli Indonesia Foundation and uh my story began in 2011. At that moment I have caught and I go to the doctor and uh he doing the X-ray and uh the X-ray said that I will have uh TB with uh specific cases. I uh I don't know how uh they I forgot still and uh when I check my sputum uh they check uh is negative. So I check it twice. My sputum is negative. But the the the doctor give me still give me the TB treatment. So they give me TB medicine. But I think that is not uh adequate. So it's not uh along with my body. So they give me once daily. So after I take the medicine once daily, after two months I cut off blood.
So they give me injection. and the blood is stopped but when I doing the heavy activity uh um I cut off blood again until 6 month uh I think I have to go to another doctor so when I go to another doctor uh they put my sputum until 3 month because that moment we still don't have the GNS part uh they found that I already resistant for three medicine and uh that moment Um I start I still remember the date uh 11 November 2011. So that is the first time I drink the uh MDR uh medicine and in 2012 uh February I I found myself pregnant.
So yeah that moment uh the hardest is when I feel the trimester of my pregnancy and also the side effect of the medicine. So it is like become one package. uh I have to vomiting every day and then see headaches and every everything I it's like uh I just uh want to give up that time but I still remember that one little life is depend on me so yeah I have to keep fighting and then uh after 8 month uh pregnancy because I around seven or maybe 8 months uh my water broke. So that moment I have the I have to do the cesar surgery. So that is the like the turning moment uh when they put me in the emergency room they put me in the glass isolation and they the doctor asking me to to change the hospital shoot that everybody can see me from the outside. So that is uh the stigma and discrimination I face during my uh time to deliver and uh even after I deliver my baby I have to separate from my baby is like
for 5 days because I they put me in the pulmonary room not in the maternal room. So uh but thanks God uh after 5 days yeah uh I finally can meet my baby and uh thanks God that he is healthy. uh he he drink TPT, preventive therapy and then after a year uh he got the BCG and then in 201 uh I recover in 2013 but in 2015 I taking care of my brother who get TB sensitive but after I taking care of my brother uh me and my first son uh get infected. So yeah that is the second time I have to struggle for me and then I have I already have two son that time. The first son uh when test is she is positive to TB and the second she he is negative. So uh the struggle is I have to recover my for myself and I have to being the caretaker for my kids. So the the challenge is when I have to uh drink the the medicine to my youngest because he is still 9 months and he is still breastfeeding that time. Uh every
time even I already crush it. He already he always sped it out. So I have to like um make uh his wallet uh like two or maybe three times. Uh sometimes uh he always throw it out like that. So uh yeah that is the hard time and um and uh but lucky me uh I have a support from my family. So they they giving me like uh spirit uh because I yeah I I just depressed that moment because I have to uh taking care of my body. I have to take care of my children too and that time make me my uh my breast my milk cannot uh so it's like stop so uh that moment uh feel that uh uh the challenge is more like heavier than before even though the the side effect is more uh heavy for MDR but the challenge uh because I have to taking care of of two life and plus me. So uh but the spirit from my family give me courage and when I every time I see my kids uh I have to give the best uh the best chance for their life. So I I do everything to make
them uh healthier like now. Yeah. Well, thank you so much for sharing that story. I have a couple of follow-up questions for you. When you were taking care of your brother and he was sick and you knew he had tuberculosis, I assume, did were you offered preventive therapy or was that not offered to you?
So, uh that moment uh he did not live with me. Oh, so you offer TBT? Yeah. Yeah. So when he is sick, uh he come to our house.
So I taking care of him. I just know when we go to the hospital that he get TB.
Yeah. Yeah. So, um I mean I think this is a really important thing to say is that you can get reinfected with TB as Anie has experienced. Um it's pretty common actually because if you don't solve the the underlying problem then you know like of TB just spreading in a community then people can get reinfected with it. Obviously it's a difficult disease in that way. Um but also that with TPT, with preventive therapy, we can prevent people from getting reinfected with TB. Um it's just that we don't have nearly enough preventive therapy available. So I think the most recent study showed that maybe 20% of people who should be getting TPT are getting it. And I think if anything that's a little uh misleading, it's it's probably more like 10%. And you know, so if my daughter got tuberculosis or my brother got tuberculosis and I was taking care of him, I would be offered TPT no problem living in the United
States. But that's actually not the case in many high burden TB countries like Indonesia. Um, which I think reveals some of the problems that we face as a as a world. Oh no, we just lost Anie. Oh no. Um, just while I was prattling on. Well, hopefully she'll be back. um time. I I want to express my gratitude to her for Oh, she's back. You're back. You were gone for a second, but now you're back. Um, one other question for you. Can you talk a little bit about the I mean, you talked a little bit about this, but the differences in taking care of someone who is sick with TB and how you see in general the role of survivors in the fight against TB in children.
Can you repeat it? Yeah. So, how you um how you experience taking care of a kid with TB, which you've talked a little bit about, and what you see as the role for TB survivors when it comes to fighting TB and kids.
Yeah. So my experience with taking care of my both uh my kid with uh preventive TB and uh the old the eldest is with uh have to drink the the TB sensitive drug. uh is like uh it's hard for me because uh that time I don't I know that the pill is bitter. So uh when you know uh that is not uh like not good enough uh for you the taste is not good for you kid but you have to give it. So that is uh like the hardest time when I have to uh seeing him uh like uh vomiting because after he drink the medicine sometime he he vomiting and uh when I see the drug is uh throw out I have to make sure that he have to drink it again. So uh as a mother it's like it's a painful for me because that moment I I I I try to be a good mother to take taking care of all my family to to do like uh to be prevent from TB but it's like that time I fail even though they
first time uh my kids already drink the TBT and already get the BC ghee uh when he he was born, but he still like uh have to uh dealing with uh with TB with TB again. So uh yeah that is hard for me and I think uh the role of the survivor uh we can be the uh what you call the the the rule the role model for the people and for the family that maybe he don't know uh that uh he have TB And we can give them like education and then uh we can give them uh awareness about uh how is TB and then uh about uh how TB can infect your family and we can give them awareness about uh how that uh to wearing a mask like how to make your uh live uh life is healthier with uh uh enough nutrition like that and we also give like advocating uh for the stakeholder sometime we do that uh to make sure that people on treatment get their right to to get the best service.
Yeah. Well, thank beautifully put and I think really important. When I was in the Philippines, I I got to see Doctors Without Borders work in um a really impoverished community in Manila and I met with a young man who'd just been diagnosed with tuberculosis hours earlier. And you know, it's one thing to hear from me or from from a nurse, if you take your medicine, you'll you'll be stronger and healthier. It's a different thing entirely to hear from a survivor uh who has had that experience, who's been through it, who knows what it's like, who knows what that feeling is.
And I think that's really, really important work. and I'm super grateful to you for for doing it. Um I want to move on now to Dr. Curio uh who is an Argentinian neonatlogist and pediatrician uh who uh is currently working in Mosamb beek and the uh the tactic which is test avoid cure TB in children. Man the TB world loves an acronym. So um so uh working on tactic in mosmbique I wonder if you can talk about some of the challenges uh Dr. Natalia in terms of treating TB but also in terms of diagnosing TB in kids and what your kind of daily experience is like um in Mosmbique right now.
Yes. Uh thank you first of all thank you for having me to give me this opportunity to talk about TV h and yes we have a lot of challenge you can imagine but I would like to h talk about three particularly because also we have patient that are suffering this and you will understand the first challenge in diagnosis is the children by themselves the children sometimes they don't have the classic uh symptoms that we know about TV in adults you know so to understand this I would like to talk about one patient random name but a real patient that is Francisco it's a 9 years old child diagnosed with TV and when we discuss with the mother h can you explain us how the disease start the mother literally say he was not playing as usual. He's not eating as usual. So the mother start to be worried to to concern and she did the consultation.
So Francisco has a long journey. No, but here the conclusion is that we need to associate also these kind of symptoms. loss of playfulness, loss of appetite, erh, weight loss to the classic symptom of TB fever, cough and night sweat, sweat, sorry. So this is a real challenge. The children are not classic. The second challenge, oh so sorry. There's a challenge that we face and unfortunately it's very common is the delay in diagnosis that of course this lead us to the delay in treatment. So the delay in diagnosis could have different reasons lack of awareness or technical skills. Also as you mentioned at the beginning the diagnosis tools that we have the diagnosis test are not perfect. Yes the sensitivity of a gene expert we know that in children is not the best. Yes. Anyway we are going to always to ask for gene expert because a negative result also is information.
So for this or to show you the delay in um in diagnosis in our patient we have the example of Regina. Regina also random name real patient. She's a little girl of one year two months old. Uh we discussed her situation yesterday in a meeting with the minister of health staff and also MSF because the question was we have this little girl with three weeks of fever and her mother is actually currently in TB treatment for resistant tuberculosis.
No. So the question for us was we need to start TB treatment in this child. Yes of course we need to start right now. Now the second question for me is what about the past history of this baby and now we and when yesterday we discover that we we have a delay in this diagnosis. Why? Because the mother was diagnosed in August of this year. and she started treatment immediately. But the child in August at the same time she was hospitalized of hospitalized sorry because of malaria and pneumonia. So the baby at the same time that the mother she has respiratory symptom she has symptom of pulmonary TV. So when was the best time to treat Regina? It was in August because she is living in a high bargain country like Mozambique.
She has a less than two years old. It's a high risk children as other children with HIV or with malnutrition. We need to pay a lot of attention in this time. also she lived with her mother closely with her mother that she has to confirm bacteriological test for TV. So if in this case for example we use these new recommendations these new tools as the treatment decision algorith this child can get the treatment the same day the same day that we diagnose the mother. So for Roina we lost three months of treatment. It's a lesson learned. It's something that we try to spread the message with all the clinician because it's super important that this is not happening again and again
right and I'm sorry the third challenge that for us we are struggling a lot these days is the roottor of medication of pediatric formulation. When I hear Amy talking about how she struggled to give the the pill the tablet to her child h you know it's not it's not good to give the adult formulation we have we face a risk we face risk of toxic toxicity we face risk of resistant we face risk that the child will not take it because it's sorry but it's horrible the like this. The pediatric formulation are made to make better aerance colleability. So we really need to push for this pediatric formulation and these days a lot of countries we are starting.
Are you starting to see more pediatric formulations available or is it still really hard? No, we have I I will not say that we don't have but you know sometimes the the system of the pharmacy supply are are difficult in at least in Mosambique all these supply chain well it's not easy you know you have
you have a request stealing paper or different operating system so it's not easy
that's very much what I've seen seen in other parts of the world too and I think you know what what we hear from our colleagues in other parts of the world is that um while they are available it's the there are often stockouts or often shortages because of the supply chain issues.
Yeah. I wonder if you can also talk about the role that you see as a doctor in the how stigma plays into delays in diagnosis and TB and kids because I know that's an important factor here.
Yes. Yes. is totally true. Especially here in Mozambique, we have a high incidence of HIV and why I'm saying this because the stigma that we face with tuberculosis is most in the cases that the child have co- infection. Yes. when they need to when they face the HIV and TV is harder for the families, it's harder for for all the community. But other thing that uh also we are facing and and I can say that sometime is uh higher than the stigma is the lack of information in the community and also in the health staff in the in the hospital in the community health centers. Erh you know we have h some new tools of diagnosis we have better treatments but the people don't know about this so if we don't know we are not asking for this so it's very important that the families knows that they can have the stools h for testing so it's easier the to get a stool from a child it's nothing complicated it's better than a spoon h
also So the treatment most of the people think still think that we have six months of treatment and for children we have a group of eligible children that can be a big group that we can give four months of treatment. So imagine for a family six months or four months is totally different. So if we encourage the the families to say look this is not too long this is four months you're going to make it h we will be with you so the information is power I need to be with the community and of course with the the health staff no all the clinician nurses all the stuff.
Great. Well, that's very helpful. Um, and thank you so much for that information. I I I do think it's really important to focus on not just the biomedical parts of tuberculosis, but also the kind of psycho social parts of tuberculosis because if we only see tuberculosis as a disease that is treated medically, we we often miss a lot of why people struggle to finish their treatment or why we see so much late diagnosis or why people are so afraid of having tuberculosis. So I think that's a really important and helpful information. Uh I want to turn now if I can to Dr. Marama Makmood who um is the head of uh the I want to get this title right, program manager for the National Leprosy and Tuberculosis Control Program under the Ministry of Health and Sanitation in Sierra Leone.
Um Dr. Dr. Marama is one of my personal TB heroes because um she's doing such incredible work in Sierra Leone, a place that matters so much to me and to our community. Um and so I'm very grateful to uh to her for joining us. And I wanted to ask you, you know, as somebody who works within within the government, as somebody who works as the manager of the national TB program, what are the big challenges that you see in making sure that every kid with TB can access not just care but also uh adequate diagnostics?
Thank you very much, John, and I'm very happy to be here. Um, if I would look at I'm happy I follow Dr. Karillo's um talk because if we could look at implementing or taking these guidelines into the field I would say I would divide these challenges into three sections you have the first challenge is getting the cases so finding the cases and diagnosing them for children so is a high TV burden country and by that we that means we put over 10,000 cases a year for as of 2024 we reported over 22,000 cases of TB in Sierra and of that proportion the estimates are that 15% are supposed to be childhood TB cases over the past few years we have not been able to hit that 15% and we've barely managed to get to 9% of cases as of last year so this means we miss about 3,000 kids with TB every year and the young kids that are zero to four years old are the are grossly underserved they we have not hit that target a And a lot of it
could be attributed to the diagnos diagnostic challenges that Dr. Kylo already mentioned. But even within the district, we have issues with low um healthcare workers have low confidence levels in diagnosing um childhood TB which could be linked to training and adequate supervision because it's mostly clinical and a lot more subjective than we would like to to assume. Um there's also very poor access to the diagnostics. the gene experts, the chest X-rays, um the chest X-rays, we already talked about the gene expert, the stool testing, but then these machines are not everywhere. So, which means even if you have a sample, you have to get it to a machine to get tested. And we rather move the samples than the patients, but there are still challenges with that.
The X-ray machines we have are also very sparsely distributed, often dysfunctional and even when they're functioning, access to that is mostly problematic because for that you cannot move a sample. You have to move the child to the X-ray machine. Um, for MDRTB it's even more dire because we we only managed to diagnose less than 1% of our cases of MDLTB last year. There's also gaps in prevention and treatment. We talked we're talking about TPT. We have a target of 90% of all children under five that are contacts of TB to receive TPT. We've only managed to achieve 2.8% of that. So it just shows the challenges that we have actually implementing some of these guidelines.
Um Dr. Ka also mentioned the four month regimen for children. It's ideal and it's very good but it also has challenges in excluding you have to exclude severe TB. If we have limited diagnostics, limited um healthcare worker capacity to diagnose that then that means we're not very confident on who to put on a four month or a six-month regimen. So this is just the implications of um policies and practice. Also, we don't have um TB screening routinely embedded in childhood child and maternal health services. We're trying for in pushing for integration now, but it's not optimal yet. So, we we're missing a lot of kids that actually come to the hospital, but they are not diagnosed with TB. And lastly, we want to talk about the systemic and structural barriers. You already started talking about that. Um John, there are border health system issues in settings like ours that impede equitable access for children to care to getting
care. You have poor contact tracing or contact investigation. Um we rely on more passive passive case finding that is the parent or caregiver has to bring the child to the hospital instead of us going out to find active cases of TB. Um we also have very limited availability of specialists. If we talk about the XA interpreting XA machines, X-ray sorry XA images or just um care for complicated cases or pediatric MDR, TB, these are all lacking. And then we come to the financial and social support gaps for Sarah Leon under five care is free.
Children under five receive free healthcare. But of course there are lots of financial barriers that persist apart from specific enablers that we give to MDITB patients. There's no enablers for TB care DSTB care and there's no social protection whatsoever for people affected by TB.
Yeah. No catastrophic cost of I'm sorry the catastrophic cost of care to the families is quite great and can impede um treatment adherence. So in a nutshell if I want to sum it up I'll say the current system looks like a seieve it could be seen as a seieve with large filters or large holes. So while we have these new guidelines, new drugs and diagnostic that are the filters, the SIE itself, which is the health system in general is too weak and inconsistent. And this means that we allow children, especially those that are the sickest or the most vulnerable to seep through these gaps and they remain undetected and undiagnosed.
Um, I really appreciate that um kind of honest analysis of of where where we're at in terms of the fra fragility of the health care system and how that affects especially kids with TB. I want to ask a couple follow-up questions. You know, you you've told me before. I if I'm not mistaken, you told me a story that that has stuck with me about one X-ray machine and how difficult it was to repair one X-ray machine and how long it took and how frustrating it was and how it meant that patients had to leave the TB hospital and go to a different hospital to get their chest X-rays and how that involved its own set of risks and its own set of stigmas. Um because you know and I wonder if you can talk a little bit about that about the the functional challenges of of making an X-ray machine work when it breaks.
Yes. So I if we had that conversation because that has been something that had frustrated me for quite a while. Um so our system is mostly donor funded. uh TB healthcare is mostly donor funded and this means that these machines are procured by donors and usually maintenanced by donors. Um so if one breaks or when one breaks because they always break um we have to then go back to said donors to get these machines fixed whether it be under a warranty or just buying parts for the machine. We had issues with um batteries for machines for quite a number. It took like two years almost three years to get these batteries um for these machines fixed. And this means that if a patient at the referral hospital at Laca for example already admitted already receiving care needs a chest X-ray badly for either diagnosis or to streamline their treatment, we have to move that patient to another facility that doesn't offer
free um um chest X-rays. they prioritize their own patients and they generally do not want TB patients in their facilities to get to receive care because they have other patients there. So this means that we have to move said patient to another machine firstly secure access to that machine for that patient and then moving these patients these are very sick patients admitted with lung disease. So some of them cannot be without oxygen for a long time. So this means that if we have to move a patient, we have to think about the oxygen support for them to and fro. Um you have to have care to a nurse to be by their side and these are not always readily available um in in reality. So just a m a machine breaking down or batteries that get um 40 batteries of a chest X-ray machine can have dire consequences on the ground for these actual patients.
Yeah, I think that's really important to understand that, you know, we're talking about two years for batteries, two years of patients not at the TB hospital, not being able to access chest X-rays at the TB hospital. And that's a real uh indictment to me of the current way that um donorup supported uh aid happens that um you know there are so many hoops to jump through that uh we end up in a situation where there's no chest x-ray machine at the TV hospital which is beyond absurd and and should be um should be something that like when when when we talk at the sort of 30,000 foot level about the future of aid uh we need to be remembering that um if the future of aid doesn't include batteries then there's something deeply wrong with the future of aid. Um the second thing I wanted to ask you about is is preventive therapy is the TPT rate. So you said that the goal is to have 90% coverage for TPT. Right now in
Sierra Leone it's at 2.8%. um you know that's partly due can can you talk about why that is and what the what the challenges are when it comes to providing TPT in a in a really fragile challenging healthcare system.
Yes. So for TPT we firstly have to find the contact and that's where active case finding comes in or contact investigation contact tracing comes in. So we actually have to find the contacts of every TB patient specifically children. So that is the first challenge getting these cases that are contacts to put on TPT. The next challenge would be actually if we actually find that case we have to exclude active TB. So we have to make sure that they don't have already have TB before we can put them on CPT. Right? that brings out its own issues of access to diagnostics um um um the expertise of the clinical team etc etc. So there's that big bottleneck as well. And then even when we exclude active TB, the drug formula formula is not always very welcoming for kids. As we already started mentioning for one of the drugs that we use now for short shorter TPT um that shortens the TPT to like 3 months or less instead of
6 months. Um like the pentin we don't have that in a child-friendly formula for kids less than two. So this means that kids less than two have to be subjected to the six month mostly have to be subjected to the six month therapy instead because of all these challenges. And another one is getting a caregiver or a parent to give a very toxic potentially toxic drug with a lot of side effects to a kid that's not sick is another challenge by itself. just trying to to to get them to understand the the the necessity of giving a child a drug for 6 months that has a lot of side effects and that child is not sick. So it has not also been very welcoming um in the community in terms of getting TPT going. So I would just highlight those ones for now as some of the big bottlenecks.
Yeah, those are big challenges though. Um and and it is really hard. I mean, if you told me my kid had to take six months of medication and they weren't sick, it would be very confusing to me. Um, and so I'm I'm sympathetic to how how challenging that is. I I think that's where someone like Anie comes in who can talk about the experience of having done it and um having that voice of survivors in in the lives of um people living with TB or people affected by TB can be really really profound. Um but again uh you know that's extremely hard in a world where you go two years without batteries for X-ray machines. Um well thank you so much for that incredibly helpful uh overview of the situation in Sierra Leone when it comes to TV and kids. Um and uh yeah it's just it's always really clarifying. Um the last thing I wanted to ask you if I can is if you can tell us whether you are facing impacts from the international
global health cuts from the US and now also the EU and the UK. Um the extent to which you're seeing that impact the experience on the ground in Sierra Leon.
Thank you John. And yes, that's a very big yes. We for a program that is mostly donor funded any cuts already even with full quote unquote support we have all these challenges and gaps and now global fund that supports over 90% of TB um services in cereon have cut back 12% for this current um allocation and because of that we've tried to rep prioritize activities and rep priority itization has included um they say we should do only lifesaving supports or lifesaving activities and this means reducing outreach activities, reducing staff training and supervision and um patient care and um the extra support to patients. So the enablers we have had to cut back even though it's just MBRTB patients that we give enablers to that even that we have had to cut back on because of the funding cuts. So activities that include community sensitization and advocacies like Annie would actually give a testimony or we
use TB survivors out there have had to be cut back because they're not considered lifesaving. So, and for me, I think that's also lifesaving because it's preventive and community engagement activities which in the long run would help us with curtailing the the TB um out outbreak call it in our communities. Also, we've had to cut back on data collection, strategic planning methods, evidence-based research that we've planned on doing. We've had to cancel or postpone certain um surveys or research that we want to do such as a drug resistance survey which is very important to know what the resistant patterns are like in country.
A stigma assessment survey. We've never had those. We've planned on doing that but we've had to cancel it to just see what the effect of stigma has in in caring for our patients. We also wanted to do a cost um catastrophic cost survey to just see what it's costing our patients to get to TB care. So all of those have been cut back and this also weakens the sustainability efforts that we've been planning on and also increases again increases donor dependency.
Yeah. Uh in in chat Benedict come for batches made a great point which is imagine if we stopped funding traffic lights because they weren't directly life-saving. um they're only indirectly life-saving. And that that feels like a lot of the a lot of what the cuts have been to is um things that are really obviously essential like uh outreach activities and survivor advocacy um that that we've all we've all seen on the ground makes a huge difference for the lives of people affected by TB. So, um thank you so much for that. I want to turn now to Dr. Huison, Dr. Dr. Kathy Huison um who uh I want to begin by asking well first I should introduce um has been with MSF since 1997 and is a tuberculosis adviser uh in MSF's operational center in in Paris. Uh so Dr. Huison, can you talk to us about why it's so difficult to diagnose TB in kids um and what can be done to improve this?
You know, we've been circling around that question, but I don't think we've directly addressed it. Yeah, look, I I think you you've got some good inputs from Dr. Natalia and Marama, but um the first the first problem is the nature of tuberculosis in children. Children get sick with very few bacteria. It means that the tests that we have which were made for adults just can't detect that many bacteria. so often that more than often the majority of children will never have a positive test which means that clinicians have to really use their clinical skills uh to be able to to diagnose TB and then they need to dare to treat TB without a confirmed diagnosis.
The other reason is the tests that were developed for adults rely a lot of them on adults coughing up sputum coughing up from the lungs samples to detect the um bacteria which children small children just swallow anything that comes up and they there no way you can get them to cough into a pot. Um so again it's the tests that are are based on a sort of adult model of of tuberculosis and and the last reason is is what Natalia very well described this atypical nature of tuberculosis in younger children. So if you don't think TB, you have to think TB. If you don't think TB, you'll never find it in children. But I think now that we understand some of the problems, I think the solutions are fairly obvious, too.
Children are the most vulnerable and are always the le the last to be thought about. They're not prioritized. They're never prioritized on a global scale on on many many scales. Um the test is is a is a good example. You know, we have tests for adults that are suitable for adults, but there's never been a test developed specifically for children for the nature of TB and children. And it takes a a political will, a sort of a an a an awareness that this is a specific problem to to confront the problem. And until we prioritize children, whether that be in research and development for better tests for children or whether that be in funding to pay for things that are specific for children, um we do have children's formulations for all the drugs for kids now, but they're a bit more expensive than the adult ones. So when you're a program manager and you have to depprioritize and you're you don't have a lot of kids,
you you go for the adult formulations and if you're under a diagnosing and you've been ended up, you know, throwing away some expired drugs, you're not going to buy them again. And you get into this sort of vicious circle of not ordering drugs because you're not diagnosing enough. But not just in in research and and and in implementation but also in in the whole um as you mentioned the whole psychosocial impact nutrition is a huge um has a huge effect on TB in children. In fact it's the number one determinant if you like of TB in general and children are the most affected. So nutrition is prevention for TB, but because we're not prioritizing that as a as a um as a preventative treatment for TB, it's not being used as a preventative treatment for TB. So I think that the access to the currently available tools, recent development for new tools, you know, um addressing all the different uh things that impact on
kids, it's a it's a a question of prioritization and thinking TB. So I think what we can do, the most important thing to do is make sure that uh the people making decisions on where money goes, the people uh making decisions in programs and um the people on the ground and families and communities can all think about children as a priority for for for TB care.
Um I want to highlight two two things that you said first that food is medicine which I think is so essential to TB care. You know, my my friend Henry in Sierra Leone, who survived multi-drugresistant TB, credits his doctor, Dr. Jerum Tfer, incredible TB doctor, for saving his life, but he also credits his mother for bringing him extra food.
Um, you know, so many people are abandoned by their families when they get sick and Henry wasn't. And it's because he wasn't that in in in his experience and his feeling that is part of why he survived. Um and the second is is the importance of of treating as one uh MSF doctor one young MSF doctor told me in in Manila the importance of treating the person not the lab.
Yeah. You know so so often we we treat the lab result not the person and be clinically obvious that someone has tuberculosis and if they have a negative gene expert test that can cause uh confusion but especially with kids a negative gene expert test might not tell us very much.
Exactly. Exactly. You got to dare to treat. Yeah. Um, I want to uh I want to I have a couple follow-up questions. Um, one is uh about diagnostics. So, there's been a lot of talk about this new cheek swab test which is supposedly going to be much less expensive in addition to being better uh which is rare that we get a test that's better and less expensive and uh really really promising it sounds like. Can you talk about what that what what we know about that and what it might mean for kids or or if that's
Yeah, I certainly I can talk to you about a sort of generation of new tests coming out specifically tongue swabs for example.
Tongue swaps. Yeah. Um and it can al these these tests can also work on sputum swabs as well. You take the the coughing up the the sample and you swab it or you swab the tongue. Um the real advantage of this new generation coming out is that they're mobile. So they're as big as the palm of your hand, run on batteries, and so if you think about acidity like you were in Manila where we're actually screening people with X-ray in the street and then we're sending their sputum their their um specimens off to our lab and then one week later we have to find them. But imagine if we could do that test there and then. It's a it's also much quicker these tests. The the test that we're using currently takes about two hours. This test takes between 10 and 30 minutes. If it's positive, it might be positive after just 10 minutes.
So that's a real game changer. People will wait for that result. Plus, you can take the machine to them. So when you're doing this sort of outreach stuff, you can take the m the the test to to the community. So, these are great advantages. Um, and cheaper. The machine is much cheaper. Um, 1% of the cost of the current machine and the test is half the cost. However, you know, there's never anything that's perfect. There are some some caveats there. So, it it's not quite as good as the test that we have on sputum samples. And if you use the tongue sample, it's not quite as good in terms of detecting the bacteria. That's for sure. Um although because you might actually get more people who can give some sample because everybody can do a tongue swab, not everybody can cough up a sample. You might it might come out even but that's in adults. It won't fix the problem that we have in kids that kids don't have a lot of bacteria. It's
not better at finding bacteria than the test we have. So it's not going to fix this problem of trying to find these these smaller amounts of bacteria. What we really need are tests that have been made with kids actually in mind. So you know doesn't rely [clears throat] on on sputum samples. So a tongue swab would be great but also is is perhaps not even trying to detect bacteria. Perhaps it's trying to detect some biomarkers or some other indication that there's TB because that's that's the problem with kids. Yeah, I hope that explained it.
That that that explains it very well and um it's it's good to know although disheartening that it won't solve the problem. Um how in general can we better protect kids from falling sick in the first place?
Yeah, look, we do have lots of of lots of options. First, children should be vaccinated at birth with BCG. Unfortunately, it does protect very well young children less than 2 years old against the most severe forms of tuberculosis, including menitis. So, that is great. But there's no protection that goes goes um on in life. So, new vaccines are in the pipeline. So, we're fully excited about that and looking forward to seeing how they can can really um perhaps bend the curve on this epidemic. Then there is um the preventative treatment that I think Annie and Marama has have talked about with all the the challenges they've talked about you know excluding TB finding the contacts I think John you were in Manila you you saw how hard it is to go to people's houses and find everybody try to get everybody who's been in contact in a household uh examine for TB have exclude TB then offer uh this TBreventative
treatment to people who are um at risk and then get people who are well to take drugs for the duration. So this preventative therapy is a great tool. The good news is that there is now um formulations for the even the smallest kids. So that is good but there's a lot of challenges that we we've already heard about. And then the last thing is nutrition and the and the whole social economic situation. And so nutrition is really important and WH has very recently put out a new recommendation that all household members of somebody who's who has tuberculosis should receive food support. This is irrespective of if they're malnourished or not. Everybody should get food support as prevention in um food insecure settings which for us is is is everywhere that we work at least.
Everybody should be getting that cuz it's a great prevention. It's also a good incentive perhaps for the family to follow um a treatment, but it's it's great prevention because it improves the immune system and then the general uh sort of socioeconomic situation. You know, TB is often a disease of poverty and when people are living together, whether it be in displaced camps or urban settings, people when people are really living close together, then there's a lot of transmission of tuberculosis. But I think we do have a lot of things we can do. Again, political will is is lacking.
Yeah. I mean, I think that's that I think that's a great takeaway for us today is that um this is a question of prioritization and political will. a decision that will be made by all of our governments together um about whether or not to prioritize uh kids with TB and TB more generally or whether to prioritize other things. And that's why the work of TB fighters is so impressive to me because they really have made a big difference when it comes to prioritizing tuberculosis care. And that's why I think this conversation has been so important is because it's a reminder to us that when we're talking about talking to our leaders about prioritizing TV, whether that's on the on Capitol Hill in the United States or uh in in in Ottawa uh or or in the UK or in the EU, wherever or or wherever you live, um if you're lucky enough to have a say in your governance, which not all of us are, but if you're lucky enough to have
a say in your governance, um taking advantage of that opportunity is really important and makes a big difference. We've seen that with the, you know, disappointing, but could have been more disappointing, uh, initial drafts of the of the US, uh, aid budget for 2026 and beyond. We've seen that with, um, with Canada's pledge to the global fund. Uh, that that we can actually make a difference. Uh, you know, it's it's hard work. Uh, it often feels like it isn't really impactful, but it can be impactful. And uh so I'm very grateful to everybody in this community who's doing that work, but also to all of y'all um for doing the real work um of providing TV care to the people who need it most and to the most vulnerable among us, which is always the kids among us.
So um thank you very much for being here. Uh thank you also to um to uh the folks running the stream behind the scenes. We really appreciate it. Um the last thing I want to ask ask you, Dr. Huison, if I may, is um where you where you find and maybe this is a question for everybody since we have a couple minutes at least. Uh where you find hope because this is very difficult work and I'm sure that it's very discouraging often. Um you know, it's it's got to be hard to be the head of a national TV program that's perennially underresourced. It's hard to provide care. It's hard to provide help to survivors. Um so where where do you where do you find hope? And maybe I'll start with you, Dr.
Yeah, thanks John. Um, look, I think any clinician will say we find hope when we see one kid get better. It's a transformation. You you can't believe a male nourish kid that looks like he's about to die and and a few weeks later he's happy and smiling. I think that's always our our best um incentive. But from a from my current role, I would say uh tactic at the test avoid cure TB and children. We've had such a incredible buying from people, people going, "Yeah, you're right. This is something we want to prioritize and we want to put our our energy behind." So, I think that um that's that's a real incentive for me.
Thanks, Dr. Mariano. Thank you, John. So in addition to Kathy's um hope with the patient, I would say it's the community movement that we're seeing now for me with TB care. TB used to be a very neglected and stigmatized disease and having been working in the field for a long number of years, I've seen the transition that has taken place in terms of community ownership and engagement for TB. I think in such a platforms we are dstigmatizing TB a lot and there's a lot more conversations now around TB. So for me that gives me hope because that means we can do something about it. We are not neglecting it anymore. We're actually bringing it out to light and a lot more people are rallying around um getting care for people that actually need need care. So that gives me hope. Thank you.
Thank you Dr. Natalia. Yes. for me related with what Dr. Mayan is saying. I found hope in the people in the people speaking speaking out and talking about tuberculosis. This will make others think about tuberculosis. So we can spread the message tuberculosis is curable. Tuberculosis has new tools of diagnosis has better treatments and new vaccines are coming. So we need to talk about there is my hope.
Thank you. And Anie will leave the last word for you. Yeah. Uh thank you. So uh I can find hope when uh I can see every mother having clear information about TB and also I can see hope if every child uh can uh eventually diagnosis and get the uh treatment and then I can see hope when every family care that sees them uh not as a case but as a human being
that's beautiful, beautifully put. Um I think that's wonderful. It's so important to see people not as patients but as human beings, not as um statistics, but as as people whose lives, um matter as much as any of ours. And so, um that's a really beautiful note to end on. I think I'm so grateful to all of you who were in the chat with us. Um and also so grateful to uh to to y'all for being here with us and sharing your expertise on TB and kids. And uh thank you very much. And as they say in our hometown of Nerd Fightiteria, don't forget to be awesome.
Questions about this episode
What is discussed in "Fighting TB in Kids: A Discussion with Doctors without Borders"?
In order: 0:00 Doctors Without Borders, John Green, Ani Hernasari, Rakat Paduli Indonesia Foundation; 10:00 Doctors Without Borders; 20:00 Mozambique, Dr. Marama Makmood; 40:00 Dr. Huison; 50:00 Dr. Huison, Dr. Mariano.
What is mentioned in this vlogbrothers episode?
18 people, works and ideas are mentioned, including TB, Doctors Without Borders, GeneXpert, MSF, TPT, John Green. Each one on this page links to its own page with every episode that mentions it.
How long is "Fighting TB in Kids: A Discussion with Doctors without Borders"?
The episode runs 1 h; the transcript is about 9,402 words in 77 timestamped sections.
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About this transcript: the episode's spoken words as captioned on YouTube, split into timestamped sections. Reclip.Me locates every person, work and idea in the text, keeps the time it is first named, and quotes the words around it verbatim. Last updated January 24, 2026.