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A health promoter in an MSF vets speaks to crowd in Eshowe, South Africa.

South Africa 2020 © MSF/Tadeu Andre


TB survivors speak out for better care

A health promoter in an MSF vets speaks to crowd in Eshowe, South Africa.

South Africa 2020 © MSF/Tadeu Andre

September 19, 2023

12:00PM-12:45PM ET

Event type: Live online

Join Doctors Without Borders/Médecins Sans Frontières (MSF) for a virtual conversation with Phumeza Tisile, a tuberculosis survivor and advocacy officer for TB Proof, and Stephen Anguva Shikoli, national coordinator of the Network of TB Champions. In this live discussion, you’ll learn about their experiences surviving TB, which is still the world’s deadliest infectious disease despite the fact that it is curable.

Phumeza lost her hearing as a side effect of the older regimen of drugs often used to treat multidrug-resistant TB. She has worked in partnership with MSF for years to take on Johnson & Johnson and other pharmaceutical corporations blocking people's access to newer and safer treatments, and was recently profiled as one of the TIME100 Next leaders in global health. Phumeza and Stephen are both extraordinary leaders in advocating for access to lifesaving TB treatments and diagnostic tests for everyone, no matter who they are or where they live. 

We're hosting this conversation with Phumeza and Stephen in the run-up to the United Nations High-Level Meeting on TB on September 22. MSF and other organizations are demanding that US corporations Johnson & Johnson (J&J) and Cepheid pledge to take action ahead of this landmark meeting to expand access to the lifesaving TB drug bedaquiline and GeneXpert tests, respectively.

MSF is one of the largest nongovernmental providers of TB treatment worldwide, and we also advocate for better care for people living with TB. Shailly Gupta, communications advisor for MSF’s Access Campaign, will moderate the discussion, and Dr. Stijn Deborggraeve, diagnostics advisor for infectious diseases for the MSF Access Campaign, will be available to answer your questions.

Above photograph: A health promoter speaks to the community in Eshowe. South Africa 2020

Shailly Gupta (00:01):

Hi all. Welcome to this interesting session and thanks for joining us for this event. My name is Shelly Gupta and I work as comms advisor for Doctors Without Borders Access Campaign. And I'm here with some incredible, incredible TB activists and advocates with me, and we'll be talking about TB treatment and access to test today. But before we move on, I want to just make some housekeeping announcements first, some of you might have heard about our French name, Médecins Sans Frontières, MSF. Just saying this because you'll be hearing that MSF being said quite a lot of times. Secondly, this event will be for 45 minutes. If you have any questions, please put those in and comment or chat section. And lastly, there'll be live captions also in case you want to read those. And now I would like our panelists to introduce themselves. If you can please say your name, what you do, and why you're here in New York this week. So over to Phumeza.

Phumeza Tisile (01:12):

Thanks, Shailly. So it's Phumeza Tisile. I am from TB proof in South Africa. I work as an advocate officer there, and I'm also an external TB survivor. So the reason I'm in New York this week is that there is this UN high level meeting on TB where the head of states meet and then they make all those promises that we hope they keep it. So that's why I'm here. And over to you, Steve.

Stephen Anguva Shikoli (01:41):

Yeah, thank you very much. Good morning, good afternoon, good evening. My name is Steven Anguva Shikoli. I'm the National Coordinator Network of TB Champion, which is an organization that brings together people that are affected and infected with tuberculosis in Kenya. I'm delighted because we were here in New York five years ago and now we are here to do mark what our states did and also make other promises and also see how the governments are going to be accountable. So from here we have a responsibility as communities and affected communities to ensure that we are putting our heads of states, our governments on check on what they're committing in this week here in New York during the UN HLM (high level meeting.)

Dr. Stijn Deborggraeve (02:21):

Thank you Steve. Hi everyone. Welcome to the session. So my name is Stijn Deborggraeve. I am the diagnostics advisor with MSF Access campaign. So we look into how we can improve access to medical tools. So in my case, it's about diagnostics so that more people can get diagnosed and the lives can be saved. I'm here in New York for the same reason as Phumeza and Steve, it's an important week, right, for the TB community. So heads of state will be meeting on Friday and I'm here in New York for the whole week to work together with TB activists like Phumeza and Steve with MSF access and MSF colleagues here in New York and globally, and also with civil society to work towards the meeting of next Friday to hear the commitments and then also call for actions that those commitments are brought to reality by the countries, by the global health actors and by industry.

Shailly Gupta (03:27):

Thanks Phumeza, Steve and Stijn for joining us today. As you know, we'll be talking about TB today, which is a curable disease, but continue to be one of the top most infectious disease killer with almost 10.6 million people getting TB every year and 1.6 million deaths everywhere. And this is not enough, almost a hundred million, sorry, of almost half a million people get drug resistant tb, which basically means they're resistant to first-line TB drugs and they have to rely on more advanced TB treatment. Sometimes, or actually many times it's hard to access those drugs or get affordable access to those drugs. The research and development for this disease have been often neglected because it impacts the most poor and vulnerable sections of society. So it has been a challenge for treatment providers like M S F for many, many years to provide access to treatment and also to testing.

But there have been a lot of progress over one year, over the last decade actually where we have seen new drugs and also new tests available for people who have TB or who have drug resistant TB. For instance, there is now among the three new drugs that are available, Bedaquiline, which is now available, developed by j and j and available in the market through generics as well, is now called the backbone of TB treatment by W H A. And the combination with this drug have made possible all oral more effective and really less toxic treatment for drug resistant TB. There is also, there's also a new test available for treatment, which is no more new, actually it's available for more than a decade, and that test is more effective in testing for TB and more accurate. But I would like to actually ask Stijn about this test in particular because there have been some breaking news about the same. We just heard today morning about the drop in prized. The test is available through two US corporations, Danaher and Cepheid and if Stijn can share more information about this breaking news. Thanks Stijn.

Dr. Stijn Deborggraeve (05:56):

Yeah, thank you Shailly, and happy to do so. So it's an important day. It's an important step that we have seen this morning taken by the company Cepheid and Danaher. So Cepheid makes these tests. Danaher actually owns Cepheid and is involved in much of the decisions of course at Cepheid . So it's about a test to diagnose TB and rifampicin resistance. So rifampicin, it's a critical first line drug to treat people with TB and this M tb, so this TB rifampicin test ultras this called is a very important test for medical care providers to the people of TB because it tells you in a very sensitive way if the person has TB and whether that TB is resistant to this first line drug. For more than 10 years, we have paid and countries have paid almost 10 US dollars for one test. This is a lot.

This is, this is the weekly income of a person in many of the affected countries. So this is a huge amount of money we have asked companies. We have publicly asked as well the companies to reduce the price of the TB tests so that more people can access it so that more lives can be saved. For more than 10 years, we didn't see a price reduction, but today is the day that we have finally seen a reduction of the price of this TB test so that more people can access it. So that was announced today by the companies also by the global funds top TB and U S A D in a joint statement. A second important component of the announcement is that Cepheid and Danaher committed to sell the test and all tests at cost, which means without a profit margin so that more people can benefit as MSF. We are very glad to see that it's an important step and an important commitment.

So yeah, Shelly, that's a bit the news. It's two big components. It's a price reduction of a critical TB test and it's a commitment to sell at cost and the company's also committed to do a yearly cost analysis so that prices can be even reduced further in the future. Just final word on this news, I really want to thank the TB activists who have been joining the time for five campaign because the time for five campaign is a campaign that we run already since three years to ask for a price reduction for a five US dollar based on evidence that we have generated in 2019 with an external group of engineers, group of consultants who told us, okay, five should be a fair price because of an estimate of the cost of production for one of these tests being below five in 2019. So we are very happy with seeing this price reduction and also the commitment to do this price or this cost analysis at Cepheid.

Shailly Gupta (09:19):

I have another question for you, Stijn. So what is the significance of this announcement for people living in lower and middle income country for time for five campaign also, and what do you think it's still missing from this announcement?

Dr. Stijn Deborggraeve (09:35):

Thank you, Shelly. So the impact cannot be underestimated. It's an important step. I mean, it's 20% reduction of a price of a lifesaving test. We know that many countries have a limited envelope for their health. I mean it's easy mathematics with the same budget, they can just buy more tests and save more life. So that's a significance. The transparency commitment, or not a transparency commitment, but the cost analysis commitment and to sell lifesaving tests at cost is another important and very significant commitment from the companies so that people go over profits and that they really commit to today to sell at cost and also do this yearly cost analysis so that prices can be adapted, go down further. What we would like to see next.

As I said, we have done this cost analysis in 2019. We didn't estimate we are not Cepheid , we don't do the production, but we have asked several times, can you share, can you say how much it costs you to produce one test so that we understand a bit if this is a fair price or not? They never responded. They never done. So today is the day that they say, okay, we'll do this cost analysis, but we request one additional one, not one multiple things. But a critical point here is that they also share these cost analyst data that they will do on a yearly basis with the public so that countries understand that they don't have to buy blindly and that they understand, okay, this is a fair price that we pay, or if it's not, so we ask for transparency, full transparency, that these yearly cost analysis, it's great, but please make those data publicly available so that there can be a build of trust with the countries that they are not buying blindly.

Second point that we hope to see next, it's an important step, but as I said, it's one of the many steps that need to be taken is about the other tests. As Shailly said in the introduction, we face a lot of cases with TB who have extensively drug resistant tb. This is a very severe form of tb, which is very difficult to treat. So you have to know from the start which resistance the bug has in a certain person and that can be done in partly with this X D R TB cartridge. There's other tests that can tell you if it's an XDR R TB or not. Unfortunately, today we didn't see in the announcement that it will be also a price reduction of these X D R cartridge, which we still pay 15. So one five US dollar per test, which is double the price now of the M T Brif ultra test.

So that's still a lot of money. We hope that Cepheid does the same cost analysis for that X D R cartridge, make those data also public for the X D R cartridge and reduce the price as soon as they can for that lifesaving X D R TB cartridge. And also for the other cartridge, because we talk a lot of TB today this week because we have a high level meeting coming up on Friday. But don't forget, there are also cartridges, TB tests, sorry, cartridges from Cepheid Danaher that can test for H I V hepatitis, Ebola, many infectious diseases, which we still pay 15 US dollars or higher. So we encourage Cepheid also to take the necessary steps to reduce the prices of these other lifesaving tests and save my lives. So I'll stop here, Shailly, because I know otherwise I'll fill the hour.

Shailly Gupta (13:40):

I'll move on to Phumeza. Now, Stijn talked about perspective of M S F as treatment provider. You mentioned reduction that you've been an X D R T P survivor. What challenges you faced or people having drug resistant TB face in accessing diagnostics and accessing timely treatment in South Africa or in beyond or beyond?

Phumeza Tisile (14:06):

Okay, thanks Shailly. So for one, when it came to my diagnosis as you asked, it was very, very difficult for the doctors and one actually to see what was wrong with me because at the time the gene expert machines that you just mentioned was not available. So that meant that I had to cough out spit, had to wait for three weeks to get the results of which the results came back. And then it was negative. I didn't have tb. So now as you just mentioned also that this gene expect machine, it can pinpoint exactly what type of TB you have. I wish I had that when I actually had TB because I went through the first line treatment, which is for drug sensitive tb, and then I didn't respond. Then I was told I have a multi-drug resistant TB and I was taking about 25 to 30 something tablets a day every day.

And also I was taking an injection at that time called Kanamycin every day for six months. So they had to give me that medication to see which ones were working for me and which ones were not working for me. Also, just to emphasize on the diagnostic with this machine, that could have been made much, much easier. So with all of those toxic drugs that I was taking, I ended up losing my hearing. I'm actually deaf from the treatment, not from tb, but from the treatment was supposed to help me in the first place. And then after that I was told that I was longer M T R. As I said, they said I had pre XL tb and again, they had to play around tablets to see which one will work and then which one will not work. They still continued giving me the injection, but it was different from Kanamycin.

It was Kanamycin one, still very painful injection. You can actually feel it in your leg getting numbs. It's that painful. But anyway, the majority stopped because I was not responding. And then finally I got the right diagnosis after years and months of, can I say how? Because treatment was really, really horrible. And they said, yes, there's a chance that I actually had X D R from the start, but there's no way of them knowing because the test was not as accurate as they hope it'll be. But with all of that and your toxic medication, I was vomiting almost every day. And then I got deaf from this treatment was supposed to help me in the first place, but eventually I got cured because M S F was also at the clinic that I was being treated on. And then they told me there's a drug does not bedaquiline.

It was Linezolid, and they were able to get this drug for me. So again, being at the right place at the right time, having the right people in the room who are able to help you, and after three years and eight months was finally cured, there are many things I could have mentioned, but it'll be here the whole day. If I have information, what I have to went through with toxic medication, diagnostics and all of that, and then hearing news that there's this new medication or better quality, then it could have replace the injection, actually could meet up as a TB activist and also a survivor. It was very, I was happy because at least people want help to enjoy what I went through. And then now finding out that this drug, you make something and then you make it out of reach for people who actually need it didn't make sense.

I mean, you did this time for five for the gene expert machine and the method there is very simple. I don't really understand math that much, but it was very, very simple. And then now you just mentioned 20% reduction. Yes. As a TB activist, it's great. That means that more people will get timely diagnosis and all of that. And yeah, I've been talking, I'm not sure if I've missed anything. Okay. Yeah, so just to add to the companies actually make these to improve people's life. Just make something and then make this something so that people actually need it can have access to it. It is that simple. I don't know why we have to fight. We have to repeat ourselves, talk the same thing all the time. You can get tiring, but we won't be tired as yet until everyone gets the right treatment, the right diagnosis at the right time. I think that's our end goal. I mean, Steve

Shailly Gupta (18:16):

So very important to have timely access to test and treatment as you rightly said. I have another question for you. You mentioned about bedaquiline, which is, as you said, it's a new drug, it's oral doesn't have many side effects, which was not unfortunately available to you for treatment, but you actually fought a battle for access to this drug in India along with Nandita. I wanted you to share more information about that and what was your journey fighting for access and do you think that the war is over to get access to bedaquiline for you in South Africa now or there's more to be done on that?

Phumeza Tisile (18:57):

So actually on my time of treatment, they say that it was available but only for compassionate use. So only a certain individual who's actually had access to it. Good thing I didn't know because I'm sure I couldn't have afford that, but it's fine, we can't change history. It happened. But then with Nandita in India, so Johnson and Johnson for instance, was trying to expand their patent laws, meaning that they will continue to make this original bedaquiline at a very high price because original means high price. So they were also preventing generic version of the treatment. Generic meaning that people in layman times, I would say people will have access to something that is of good quality but at much cheaper price. So I actually, yes, was part of this fight to stop Johnson and Johnson actually extending their patent in India. And yeah, the news came in earlier this year that Indian government rejected, meaning that now people who have more access to this drug , which is bedaquiline, it was great.

We celebrated and I was somewhere in the world when I heard the news and people were saying, yeah, that's a good thing that we did. And then in South African context, so not long ago, we found out that in South Africa, Johnson and Johnson, we get our bedaquiline from Johnson Johnson and it's way too high than any other countries. The price is way too high. So for me it was like, okay, I fought for India, but then our South African government is allowing something like this to happen. Why is that? And then yes, there was a webinar last week that was organized by MSF South Africa, and no, it was really, again, really simple. Why is South African government allowing Johnson and Johnson make it this high price, meaning that again, access problem, most people won't have access to this. And now I hear that they're being investigated by competition commission or something like that. So yes, hopefully South African government will also stop blindly not giving up patents so that people can have quality medication at a very affordable price.

Shailly Gupta (21:06):

Thanks, Phumeza. I want to add one thing here. What Phumeza was saying that the price of bedaquiline by j and j has now dropped to $130 as part of its deal with Stop TB partnership and Global drug facility. But as Phumeza was saying that South Africa right now is still has they have an agreement with Johnson Johnson for the prize, which is more than double the prize that is being quoted by Johnson Johnson under this deal. So now I'm going to move on to Steve. Steve, thank you for coming here first and I want to know about your journey of going through a treatment of TB and what inspired you to become a TB advocate now and what are you advocating for?

Stephen Anguva Shikoli (21:55):

Thank you very much Shailly and my journey with tb, I suffered TB in 2009 and faced stigma and discrimination that led me to start advocating because I didn't want anybody to go what I went through. Because when you're stigmatized by people outside there, that's different. Unlike when you're stigmatized by family. So my past stigma was from the family and I felt like now I was being rejected and also because I had delays in accessing to TB screening as well as TB testing. And during that time, it was almost 13 years ago, we didn't have tests like gene expert. So that means if we would've had access to those tests by that time, then I would've known immediately that I have TB and many people would've gotten support. So that pushed me to ensure that I'm trying to advocate in the community to ensure that people understand that TB is there, people go for screening and people are treated for tb.

The only challenge is also again, as we've spoke about gene expert, is access. I know the world is battling to ensure that we are ending TB by 2030, but you can't end TB if you don't find tb. So we need innovation, we need more innovation when it comes to tb, diagnostic gene expert is one of the tests, but we need even more people to come out there. Researchers need to come up. We wake up, we have more innovation to ensure that we have different options for TB diagnostics because before gene expert, we had microscopy. Like now in Kenya, we look at 2022. If you look at statistics, we diagnosed around 92,000 people with tb. But even despite having that 92,000 people that were diagnosed, we missed close to 40%. Why were we missing that? Because of access, lack of access to these test kit, lack of access to cartridges, and looking at our colleagues at Cepheid who are the gene expert supporters, there is that component of monopoly whereby it's the only company that provides.

So that means if a machine breaks in area one or area two, it is them that have to come. So the machine can be there, but it is not functional due to lack of other expertise or lack of other options. So they have to come all the way in the country and to do the repairs. So we need to see research coming up and ensuring that more people are coming on board to ensure that we are having more option. If you look at other diseases, like currently we had covid 19, many innovation came in. We have different tests that you can walk in any place and you are tested with a different molecular tests. But with tb, we are still struggling. And if you look at all those diseases that we talk about, tb, H I v, malaria, TB has been a disease that has been there many years, but we need to come and be innovative. So that has pushed me to ensure that I'm bringing on board people that are affected and infected with TB in the country in Kenya to ensure that we are pushing those that get cured. They encourage others, they support each other so that we are gearing to treatment. There is a slogan that we say in Kenya, which is molika tb, miliza tb , which means find TB endtb. That means you cannot end it before you find it.

Shailly Gupta (25:20):

Thank you, Steve. I'd like to ask Stijn if you want to add more about our experiences of testing TB in Africa.

Dr. Stijn Deborggraeve (25:31):

Yeah, thank you Shailly. Thank you Phumeza and Steve, I just wanted to comment indeed and echo what Steve said about what we see today. This price reduction for a diagnostic test is super good. I mean, it's an important day and important news, but what Steve said that we need more tools is very important. So we are dependent on a few, one company, few companies, and we really want to see other players in the same market, but coming also with better tests. And if you ask me, Shailly, in terms of our experience, I just want to call for more sensitive, better tests for the children with tb. Because in our M S F clinics, when we ask, okay, what is your number one priority that you would like to see changed, they always get back with the same answer. We need better tools to be able to diagnose TB in children.

Just to give you a few figures, I mean from all the children with TB who are below five years old, 96% are never tested or cannot be tested in an accurate way and treated. So 96% of all the children with TB below five years old. This is just unacceptable of course. And why is that? There are two reasons. I won't go into too many technical details, but the main reason is these children become sick with much lower bacteria in their body. So we need more sensitive tests to be able to diagnose them. And secondly, gene experts is done on sputum, right? It's just not possible for a child which is super sick, which is below five years old. But even older children, which are very sick, they just cannot do that. So we don't have the samples. So we need easy to use very sensitive tests that can test TB in a saliva and an oral swab in a simple blood test so that we can detect more children with TB because they are a priority group. Yeah, I wanted to add

Shailly Gupta (27:48):

Thanks Steve, for talking about experience of accessing tests, especially in Kenya and around. I have another question for you. So you heard about this news today from Danaher and Cepheid about a price drop for gene expert test. Are you happy or you still have more things to ask to these two corporations, and how do you think this announcement is? You think this announcement is going to make any change in countries which have high burden of tb?

Stephen Anguva Shikoli (28:31):

Yeah. Thank you very much Shailly. And I think I'll pick it up from what last Stijn said, the news is good is welcomed, but did we have to wait for almost 10 years? That's my biggest question. Why do we have to wait all that long before we think that we need to reduce these prices? And again, transparency, you know, can reduce price by announcement, but implementation, do we have policies that will ensure that this is being implemented? Do we have accountability mechanism? Because in some instances we've seen companies reducing prices, but implementation takes almost two to three years for you to see the implementation part of it. So the announcement is good, is welcomed, but we need to do more. We need to see more action in terms of implementation and countries need now to start asking you say this and this date, you say that you're going to reduce this price. What are the policies that are in place? What are these transparency measures to see that surely even that person at the grassroots in the lowest level, they're able to access these at that price that you announced when we were in New York.

Shailly Gupta (29:43):

Thank you. This is so, so key why it took them 10 years to drop the prize. We have started getting questions now from the audience. So I'm going to ask this question and feel free, whoever is keen or would like to answer this is a question from Edna who's watching us on live on LinkedIn. In Honduras, patient's compliance is still poor. Most patients have no access to a social worker or case manager to address their needs throughout the treatment process. How can we improve this for TB patients globally? What support is already available and what more is needed? Okay, I pass it on to all three Phumeza, the first.

Phumeza Tisile (30:23):

Okay, so yes, thanks for that message, Edna. So there are many gaps when it comes to tb. I mean, again, we'll be here the whole day. We have to list them all. But yes, TB counseling is much very needed. And we've noticed this also in Cape Town that most TB patients do not get quality TB counseling. Meaning that if you don't understand that this is what you have, there's likely that you'll stop your treatment because you don't understand it in the first place. Also, we have stigma that is mostly attached to tb and then if you're not counseling and explain what disease that you have, then of course you'll sort of isolate yourself because you don't even understand what's going on and you don't have the support that you actually need. So counseling gap, and then there's a stigma gap. And then now with the testing diagnostic test, there's this universal targeted testing is called t U tt, whereby it's about test treat, but then with that it should be implemented well so that patients when you know tb cascade, when you go to the healthcare facility because you're not well, and then you meet this counselor before you even start the treatment to explain to you what should explain the treatment that is going to be given to you and all of that.

And also there should be support groups. I'm sure from different parts of the world we'll do things differently, but what worked for me as a TB survivor is having people actually have the same disease talking about the same problems that we're experiencing. And because I was missed also in the typical so that it helps with your mental health and all of that and with that message, nothing on you Edna, but yes, there's also stigmatizing language. For instance, people living with TB instead of calling them cases or yes, also not just correcting on the naming of things. So instead of saying TB cases, people leaving TB and also many, many other things, as I said, we'll be here all day. I have to explain everything, so I'll just give,

Stephen Anguva Shikoli (32:19):

Yeah, thank you very much. Just to add onto what Phumeza said, I think the reason why we have people with challenges to the adherence is because we have done TB has been put like a biomedical problem. However, TB is a social problem because you cough, you spread tb, you cough, you spread TB to the other person. That means that we need that social support and it needs to be comprehensive services. And what Fezza said about counseling, yes, in most of our settings you are counseled when you are starting treatment and that is it. But we need those regular counseling, regular it need to be comprehensive TB care services the way we have with H I V care services, which is comprehensive. And comprehensive means also the component of nutrition. Maybe somebody is not adhering to treatment because they have no food in their house.

How do we come in and support them? We need to see corporate responsibility whereby as per markets, banks, they initiate, they support people with tb, with maybe food basket to ensure that they're taking treatment. It's not about treatment, but it's about ensuring that somebody gets up and goes back to their normal duty. So social support, ensuring that we're engaging affected communities to come together. We have many affected communities in different countries that can come together and support each other when they're taking treatment. Let's invest in these community people, the community of TB affected communities and let's remove TB from hospitals. Let's bring TB the community and we'll be able to end TB and people are adhere to treatment. Let it be a comprehensive. Finally, it's not about TB treatment alone. When people develop side effects, let's try and address them. Many are times that people take TB treatment and when they develop side effects, nobody's addressing them.

So what do they say? They just leave the treatment because they say, if I take this RH, that if I take this anti TB drug, this is what I'm feeling and yet somebody is not addressing it. So let's have a comprehensive care for TB to ensure that somebody has a medicine. If I come and I'm on TB treatment and I develop headache, address that headache because that headache is a side effect that has been brought from TB treatment. So let's have a comprehensive care to ensure that when somebody starts TB treatment gets the full package.

Dr. Stijn Deborggraeve (34:42):

You said it all for me and Steve. Wonderful. So nothing to add. Thank you.

Shailly Gupta (34:50):

While we wait for more questions, I know that Steve and Phumeza are very dedicated advocates in their countries and I know you already shared a lot what needs to be done. Of course, treatment is not enough. There are a lot of other social components that we have to look on or focus on. I don't know if you want to add more Phumeza, Steve about what else needs to be done. I know Steve mentioned about nutrition and how much governments are really supporting in that respect to people who have tb, if you want to or any other issue you want to mention.

Stephen Anguva Shikoli (35:28):

Yeah, I think I will also need to highlight the issue of vaccine TB is where we are using B C G vaccine, which is more than a hundred years ago. More than a hundred years old. That means that no matter what we do, we are not protecting our young people. We're not protecting our children. As Stijn said that 96% of children tb, we don't have tests. So we need to invest in vaccine in TB vaccine that can be able to assist us and ensure that people that come from the high burden countries, the likes of Kenya in Africa, that we are able to prevent our children also invest in TB preventive therapy. I know we have TB preventive therapy that is in different countries, but accessibility also, there is that limitation. We need to remove those barriers. If we remove those barriers, then we'll be able to prevent those that are in need of prevention and we'll be able to treat those that are in need of treatment.

If we invest in that, then we'll be able to address the TB issues. I come on guys. TB has been here for many years. Let's not be talking about tb. We fought leprosy, we finished leprosy, we have very few cases of leprosy. We fought things like polio. We have very few cases of polio in the world. So why not tb? Let's all put on effort, bring in your effort, bring in the science, let's all work together to ensure that we are being innovative enough and doing things unusual to ensure that we are getting a very formidable way and a very formidable end to this tuberculosis.

Phumeza Tisile (37:05):

Okay. Also, just to add to you, just remind me some things. So there is a thing especially in South Africa and also other African countries and all around the world called the National Strategic Plan, and it actually highlights what needs to be done when it comes to H I V TIB and malaria and yes, with the TIB preventive therapy because we do not have the vaccine, at least there is something that can prevent you from having tib if I close contacts because there's still a problem with terminology of high risk groups. So we're trying to see which one works well, which one is better. So TB preventive therapy cannot only be, in theory, it should be implemented. Other people I have TB and then you just talk now, then you can be able to access that and also with people living with H I V and everyone who is under the high risk group, sorry if this word offend you, but we're still trying to find the right terminology on this.

And also, yes, tb, there are many things that need to be implemented and it always falls on the civil society organization because that's the push for things to happen. And I think civil society organization, as I've met them here in New York also, yes, we are doing a very important work that led us here to this discussion today, calling on big companies to tell them what is not right and what needs to be done. So yeah, we are not scared. We use our voices to change, policies needs to change and more people should have access to quality treatment and also be able to be cured and have quality life at the end of the day. Yes,

Dr. Stijn Deborggraeve (38:36):

I will try to keep it short. Just to add what we would like to see as we started the conversation, today is an important day because of the price reduction to the TB test from Cepheid and Danaher. Friday is also an important day. Then the heads of states ministries, all delegates will meet at the UN to discuss and decide what they will do to prevent TB in the people that are affected in the communities. There was the same meeting five years ago. Unfortunately, we didn't see a lot of improvements. If you look to the stats, I mean it didn't go down unfortunately. Of course there's a lot of factors involved, but we really want to ask next Friday if the heads of states make commitments that this is not remaining just a paper that they do all they can when they get back to the countries to do everything they can to make sure these commitments are brought to a reality so that more people can be saved and do not have to suffer from tb. Also monitoring if they do commitments, how does that work out in their country? What are the gaps? How will they fill the gaps? And of course, countries shouldn't do that alone. They should be support, financial support by actors, by other countries who are able to support lower and middle income countries to fight against tb. But I really want to go for next Friday. Please make commitments that save lives, but also bring those commitments into practice when you go back home.

Stephen Anguva Shikoli (40:17):

Just to point out about, for us to end tb, it should be an all inclusive, it should be, it should bring on board them multi-sectoral account whereby it's not about ministries of health. We are going wrong with TB because we've just left TB for the Ministry of Health. But TB is not a health problem. It becomes a health problem when somebody comes to the hospital, but somebody will get TB in a vehicle when they are commuting. Somebody will get TB when they're working. That is when they're miners. They're getting TB in the mining area. People will get TB when they are working in banks. So it is all problem, it's all round. Then it falls to the minister of health. So I think I'll join my colleague in calling to the heads of state in different countries to ensure that TB is tackled at a multi-sectoral approach.

The way we saw with aids, because with H I V, you have companies that have AIDS control units in each company. Why can't we have same in tb? We need to see TB control units in our banks, TB control units in our companies. We need to have that as a way of bridging that gap of access to TB treatment, access to TB information. Also awareness needs to be done in everywhere. Most of our countries, we come to create awareness on TB during the wild TB day and that is it. Then we go silent and again, we wait March 24th that week of March. It's when we make a lot of innovation. We make a lot of information going out on tb, but let's take it like TB is a daily disease. You don't breathe on world T B D alone, we breathe every day and we are all connected by the air that we breathe. So it's high time. We take TB fight as a corporate, as a responsibility of everyone because TB anywhere is TB everywhere. If we don't work together, if we don't bring in our efforts, then TB is going to take us down.

Shailly Gupta (42:11):

Thanks Steve. Very, very powerful. I'm going to ask one last question from all of you. You all had very strong calls for head of states and for governments or for ministry of health, from where you come from. Is there anything you want to ask viewers, how they can support you in this fight against tb, which is supposedly is a prehistoric disease but still so prevalent in countries in lower and middle income countries. How can they raise their voice and what would you like them to do

Phumeza Tisile (42:45):

So to the South African government who might or might not be listening to this and yes, so it's very simple. You make promises, just keep them. Keep the promises you make because you give people who actually leaving the TB and you give people actually working with tb, you hope. And then when it comes to actually implementing whatever we've asked or whatever you promised, then it becomes a problem. And then we have a TB pandemic. I mean do as you did with COVID 19, make TB a priority as any other disease like you did with COVID 19. And yes, there are many things that are missing when it comes to tb. TB vaccine is not a thing, it's not there and research and development is not the thing. But then to the South African government, just keep your promises so that myself as a TB activist and also TB survivor from South Africa and also any other civil society organization that are working in South Africa to know where we are headed, as we said the last was also here on the 2018 last high level meeting. It's great when it's read what needs to be done, what will be done, then when it comes to actually something being done, then it's not done. Then it becomes problematic. But then society, we'll not be quiet about this and yeah, we'll tell you what's what and hopefully we can work together and not against each other to find best solution for all of us.

Stephen Anguva Shikoli (44:08):

So thank you. I like to say a few things. Everybody has a responsibility to doing the fight against tb. One, talk about TB two, test for tb and three, invest in tb. Let's invest in TB and everybody can invest in tb. If you want to have a healthy nation, ensure you're investing in TB because no matter how you do, if people are sick, you will not improve the state. So let's all invest in TB and ensure that we are preventing tb. TB cannot defeat us. We have the weapons to defeat tb.

Dr. Stijn Deborggraeve (44:50):

Thank you Steve and Phumeza. Just to add what people can do who are now listening into the session. Of course, except if you are a head of state, of course you can do a lot, but I assume we are all people who can do something. Whoever is there, everybody as Steve can do, said, can be part of the work. I think it's very important for people in tb, high burden countries to really speak out. Don't be silent. And really whenever you have an opportunity to speak out or to go to the government and say, Hey, this is happening in our countries in terms of the fight to tb, we still want to see more. We know that you're doing this and this, but we still want to do this and this. So just don't be silent and really speak out for the people who have TB or living with tb.

If you are in other countries which are facing lower burden of tb, like here in the states, like in Europe, don't be silent. You also can help in the work. I mean it's a global disease. I mean we in Europe in the States can go also and speak out as we do in M S F and together with civil society here in the States and in Europe and in the high burden countries. We can also go to our governments. We can go to industry. Most of, unfortunately, most of the main suppliers of TB tests and diagnostics are not in high burden countries. It's in high income countries. We can go to those companies. We can speak out to governments in high income countries. Please do more. It's not acceptable that still today, 1.6 million people die of tb and that's more than H I V and malaria together. And so it's the number one infectious disease killer. It's curable. As Phumeza explained, it's preventable. It's curable. So why for the sake, are we still in this situation today so everybody can speak out that concern until we see TB ending, hopefully one day.

Shailly Gupta (47:09):

Thank you. Thank you Phumeza , Steve and Stijn. We are going to close the session now. I want to say in the end that medicines and tests shouldn't be luxury for anyone who needs it. We fought this battle as M S F, getting affordable access to tests and treatment, and we all want you to continue joining this battle with us and keep asking the industry. And Stijn very rightly said that we need to keep calling on pharmaceutical industry that these tests and these treatments shouldn't be a luxury. I'm going to wrap this up now. Thank you all three of you again, and thank you to all our audience who joined us live today. If you have any questions later on, feel free to write to us our details of where you can actually reach out to us. We'll be there in the chat. You can go to our website to get more details about this issue and you can follow us on different social media channels to know more about what we are doing in New York this week and why we continue to talk about tb. Thank you all.

Meet the speakers

Phumeza Tisile

Phumeza Tisile is a health activist, student at the University of Cape Town, and an advocacy officer at TB Proof. In 2010 she was diagnosed with normal tuberculosis but eventually learned that she had extensively drug-resistant TB (XDR-TB). She went through grueling treatment for multidrug-resistant TB (MDR-TB) that left her deaf in both ears. In February 2015 she got a once in a lifetime chance to hear again through a crowdfunded campaign that helped pay for two cochlear implants. She has led numerous advocacy efforts around the world. In 2014, she co-authored and presented the first DR-TB manifesto, “Test Me, Treat Me,” to the World Health Assembly in Geneva. In 2023, she was named on the TIME100 Next list of influential leaders.

Stephen Anguva Shikoli

Stephen Anguva Shikoli is the national coordinator of the advocacy group Network of TB Champions, based in Kenya. Stephen recovered from this disease in 2009 and has been an avid advocate for better TB treatments since then. He is a member of several national and global working groups, including the Stop TB Partnership. He is also the founder of his own organization in Nairobi called the Pamoja TB group, which advocates for better services for TB and HIV patients while addressing stigma and discrimination in the community.  

Shailly Gupta

Shailly Gupta is the communications advisor for the MSF Access Campaign based in Geneva. She is an expert in advocacy and development communications with 15 years of experience in the area of public health and access to medicines. She has worked extensively on advocating and communicating against intellectual property barriers to access to affordable diagnostics, medicines, and vaccines and has worked on disease-specific dossiers including COVID, tuberculosis , HIV, hepatitis C, non-communicable diseases, and neglected tropical diseases including Ebola. She is passionate about finding opportunities to amplify the voices of people from affected communities and holding power to account.

Dr. Stijn Deborggraeve

Dr. Stijn Deborggraeve is the diagnostics advisor for infectious diseases for the MSF Access Campaign. Together with the MSF movement, global health actors, civil society, and country governments, he works to improve access to diagnostics through advocacy for affordable and transparent pricing, sustainable supply, and R&D that meets the needs of low and middle-income countries.