 is just vlogbrothers. Hey everybody, thank you so much for joining us. We are live now, I think, on the vlogbrothers channel, but I have to make sure it's working, it is working. All right, so we can see all your comments. If we move over from private chat to comments, your comments just roll in, good morning, so nice to see you, sorry to be one minute late, people expect me to be very punctual. So I wanna just, first off, I just wanna say that because you're used to seeing me on this YouTube channel, you're not used to seeing our other guests, so I just wanna briefly introduce them and explain to you why for me this is like if my daughter was asked to interview Olivia Rodrigo or Taylor Swift. So we're joined by four of my absolute heroes, four people I look up to a lot, Dr. Anamesh Sinha, Dr. Carol Mitnick, Nandita and Fumesa. Nandita and Fumesa, for those who don't know, are TV survivors who join together with Doctors Without Borders, MSF as it's known, to sue the Indian government to make generic bedackeling possible, to make it so that India would not honor J&J's attempts to create a secondary patent and extend the life of their patent past its normal life. They succeeded, that is the reason why generic bedackeling was ready to be produced the day the patent expired. It is incredible, what they've accomplished, not just with that project, but in their lives as a whole. I'm so excited to get to hear from them. Dr. Sinha is a longtime TV doctor in many countries around the world and Dr. Carol Mitnick is my friend and hero. Okay, so that's a little bit of background. I wanted to start with Nandita because I don't know how much time she has. She has a job. Yeah. It's a good thing for people to be here. Yeah, we're glad to have you here while you're able to be here. So I wonder if you could just tell us a little bit of your story of the challenges to find out that you had tuberculosis and then the extraordinary challenges you faced through the treatment process. So firstly, hi, thank you so much, John, for having me with such stellar panelists and people I've only met on social media and it's very nice to see everyone here. So I'm a two-time TV survivor and I had intestinal TB, which is known as extra pulmonary TB. TB is generally known to be caught, you contract it in your lungs, but that was not in my case. I've got it in my intestine. I had it for the first time in 2007. When I was a 17-year-old, just about two months before I would turn an adult, I was diagnosed with the disease. I was starting my undergraduate studies and right in the middle of that, I get to know that, okay, wow, I have got this disease. I had no idea about this anywhere. It was not a name that I was very familiar with until I was told that I am having it myself. And then I underwent a treatment for close to 15 months after that and I was cured completely. I was, my doctor told me that, my treating doctor told me that you're done and you can go ahead with your life and this disease is now a thing of the past and you don't need to worry about this disease anymore. But then I did my masters and then in 2013, I suffered a relapse, what you call as reinfection and the disease came back to the same organ, intestine. And the medicines that I was put on did not work on me very well. I was told that my disease has progressed to a very severe stage and in the process of getting treated, I underwent six surgeries in my abdomen and I was hospitalized for close to 90 days. I was a 24 year old girl who was, I was very looking forward to the life ahead after my post-graduation graduate studies. But here I was this disease just through my life off the cliff completely. And after that in right around November, 2013, because of an injection that was administered to me as part of my treatment that was called a scanomycin, I suffered a complete loss of hearing. So it would sound like I am probably narrating a horror fiction, but if I'll tell you the way I actually lost my hearing, it was like this, that I slept at around two o'clock in the afternoon. I spoke to everyone around me, my family members, everyone. I slept at 2 p.m. and I woke up at 2.15 and I couldn't hear anything, that's all. So I was actually able to hear everything before that and then 15 minutes later, I didn't hear anything. So we initially thought for a day, I was living in sort of a denial that, okay, maybe this is not, I mean, where will one think about hearing loss? I mean, this is not even a thing that anyone even thinks of in the course of your regular treatment that suddenly you will just lose your hearing. So we thought of other things, okay, maybe something else, it's just something temporary. But then I think a day or two later, we were informed that this was because of a medicine. And that was, I think, that was I think one of the most horrifying days of my life, the way of my life, the day I got to know that it was a loss of hearing, not because of a bacteria, which I was trying to fight off, but it was actually because of a medicine that I lost the hearing. So that I think was something difficult to come to terms with. But then, yeah, so this was been my journey with TB. Today, I guess we, Fumiz and we do it, we just hope to ensure that these kind of, what do you say, horrifying or very difficult experiences, one need not confront with the disease. It should be just a cakewalk for anyone who gets it that, okay, I just take the medicine and I'm cured. No one needs to grapple with these kind of questions or existential questions. That's what we hope for. And you and Fumiz both have cochlear implants, correct? But many people who experienced hearing loss from the injectables are not able to afford cochlear implants because they're very, very expensive. And so for many people, there is no, I mean, the hearing loss is permanent and it's entire, and there is no remedy for it. And one of the reasons why Nandita and Fumiz and correct me if I'm wrong here Nandita, but one of the reasons you fought so hard for access to Badakuline is that Badakuline can replace these injectables and it's vastly more safe and it doesn't cause hearing loss or the other toxicities that are associated with those injectable drugs. Is that right? Yeah, that is the reason I would like to add here that no drug comes without its side effects. Of course, Badakuline, you have to be careful about say, cardiotoxicity and even I think over the years from what researchers have done, this is not me saying, I think Dr. Carole and everyone who works on TB will attest to the fact that, and I'm talking from what they have done from their work that Badakuline is seen as something safer and the fact that it is not really I don't think these kind of medicines should exist anymore where they just pack off your ears or they pack off your kidneys and things like that. And what I was barely 23, 24 years old, I keep saying and emphasizing on my age only because of the fact that it's a young girl and we were young people who had to go through these kind of experiences, which was, I felt at least the hearing loss could have been completely avoided had we seen better drugs available for, or better treatments, whether it is diagnostics or even whether it is better medicines. And I say that before I hand it over to you, John, I say that because I actually got this realization even more when I saw what happened with COVID. So in the two years when we saw the COVID crisis unfold, I was in the UK and I was pursuing a master's at the University of Oxford where I had received a full scholarship to go and study there and I was seeing the COVID crisis unfold and I saw the kind of treatments that were coming up every other day and every other week I would see an announcement of a drug of a vaccine or something that's just coming up. But then I would think that everybody we're talking about, oh my God, we have to isolate ourselves, we are feeling so terrible, we are feeling so lonely and I would think that this is not something new, I've gone through all of this already. That sort of, the dissonance was very stark. Especially COVID made me realize that the difference. Yeah, I mean, I think it says a lot, like the reason we're in this mess is because between 1940 and 1965, in those 25 years, we developed eight classes of drugs that can treat tuberculosis and then between 1965 and 2013, we developed none. And now we have butachaline, we have some promising new therapies in the pipeline, but that 40 years where we basically completely ignored tuberculosis as a global health community was catastrophic. And I think it's really important to know that that's a catastrophe that real people feel in their real lives. Fumeza, I wanna turn to you, I know you had a lot of challenges around diagnostics and one of the reasons, so we've been talking about butachaline and Johnson and Johnson's choice to continue to apply their secondary patent, even though access has expanded. I know you're from South Africa where just today actually, wonderfully, another big victory for TV fighters, just today it was announced that the South African government is gonna be investigating J&J's attempts to continue to enforce their secondary patents in South Africa and keep those prices artificially high even as much of the world seeing lower cost generics thanks to the work that y'all have done. So I wondered if you could talk about that indeed. I wondered if you could talk about that and how you feel about that news today and then talk a little bit about your journey and your journey to diagnosis because I know it was difficult and I know in a world with gene expert machines it might have been very different. Yes, thank you John. So I think it's good news because South Africa is the only country that is actually getting better quality from Johnson & Johnson at a much higher price compared to any other country. So it was unfair for people actually living with the disease and as activists, we were angry because why? That was the question. But yes, going back to my story, so it took a while for me to get the correct TV diagnostic because at the time I was a student, a first day student at University, I was 19 years old. I saw that I was not well, I didn't have the common TB symptoms or the obvious TB symptoms just that I got tired easily and I had a struggle like climbing the stairs. So I went to the doctor and then the doctor checked for all common diseases including HIV, they all came back negative. But then he saw that I was not well and at this point I was lost like I was very thin. He said that I must do a TB test at a local clinic in Cape Town. So private doctors do not check for TB, they refer you to the clinic. So I went to the clinic very sick, struggling to walk struggling to break the shortness of breath and then contested for TB, I told them that I was there, contested for TB, I had to wait at this time for three weeks to get the results, but then I was only given like pain medication or I was not in pain, which didn't make sense but they did do something I assume. So I went back to the clinic to get the results after two to three weeks and then the results show that it was negative meaning that I do not have TB. But because they saw the situation I was in, I mean I was like my lowest weight, 32 kg, not sure what it is in pounds in the United States. About 70. It's very thin. So they said I must do a Chex X-ray and then I go to another clinic to get a Chex X-ray and then I was diagnosed through the Chex X-ray. And then I was started on this first line TB drugs, there's a normal TB, I call it normal TB, very big tablets the way easy to take but then I was not getting better, I was getting worse. So I went back to the clinic, got tested again and then this time around the results came back, they told me that I had multi drug resistant TB also known as MTRTB and that I needed to be hospitalized because I was very infectious. And then they gave me like this cocktail of drugs like 25 tablets. And then there was also an injection that Nandita talked about. And then there was no explanation we just given the drugs and then we were off. But then I don't know how, but I woke up in hospital at Proclentius Hospital in Cape Town. And with this, you know, taking this drug, I thought it was a joke because it's different drugs, different colors, different sizes. It's not like you're gonna take them and then it's gonna be fine. It doesn't work like that, you take them, they come out, you vomit. And then after months doing that almost every day, we know the injections. It's very, very painful. It's been described as if you have been injected by lava that thing that near. So it's very numb. Imagine getting that injection every day. They let me get that for six months. It was very painful. But then I woke up as similar to Nandita, but my story is that I woke up and then I could not hear anything. You know, went to the bathroom and you wake up. And then there was no sound of running water, no sound of the toilet, nothing was quiet. The next came, she was talking, I know this because her lips were moving, but I could not make up what she was saying. She actually just took a pen and paper and just wrote down everything that I must go to the, you know, audio department to get my ears tested. I did the test. I could hear some sounds. I could not hear some sounds. And then it was the most awkward thing because on my folder, no one was talking to me because I was I could not hear them, but they wrote deaf and capital letters in a red pen. Then they wrote, I must go to the doctor, the doctor explain, you know, what was happening in writing. And then I had to do the speaking. And then I could not even hear myself, which is what the most confusing thing felt like a dream because this can't be real. No one told me that I should expect no being deaf. And then they explained everything. They were very sorry. There's nothing that they can do, this and that. And then they told me I'd pre-ex-DRTB. And then I needed to be tested again for some reason. No doctors, maybe doctors in this room will explain all of that. And then I got tested again. Then they saw something unusual in my lungs. They assumed cancer. They assumed tumor, but it does not fit all those questions, some milkweed that was building in my lungs caused by TB treatment or TB. And then I did the surgery where I broke in lung and the collapsed rib. Said sorry again. Then I was discharged, you know, getting better. And then I was finally discharged to go home to finish my pre-ex-DRTB drugs. But after nine months or so, they told me, I had 20% of child surviving and that the pre-ex-DRTB drugs have stopped working. And now I have full-blown XDRTB. And I was given an option because at the clinic, there was an MSF doctor who was there for the 24 hours. She explained fully each drug that I would be taking. And then they told me about this other drug that they were willing to try. It was my choice whether I want to take the drug or not. So they gave me a choice. I usually take the drug and hope for a miracle. That's what you said. Or I don't take the drug and then I just pass away because I was also advised to save, please, you know, to prepare me so long story. It's very, very long. But anyway, after intervention from MSF and, you know, my willingness to live, I was finally cured after three years and eight months. And sadly enough, as Nadeeta, I was also deaf. So that meant that I could not go back to universities. I was a first-year student. So I don't know, I was googling how to get your hearing back, no curious. And then I saw all those things, these things online. But then I come across cochlear implants. Yes, we are fortunate enough to get cochlear implants for their very, very expensive, 40,000 US dollars. And that's about close to a million. It's expensive in any currency. But what I wish could have happened is that when I knew they knew that I was sick, like I knew that I was sick, so I went to seek help. I wish that there was this test, like it is now to an expect test to get tested. And then they know exactly what is wrong with you. Like if this XTR does says XTR, because I was only told later that there is a chance that I actually had XTR from the start, all of that could have been prevented. My hearing loss, my vomiting yesterday, all of that suffering for three years and it must could have been prevented. If there was this mission that is available now to get the XTR test, that everyone can have access to it. Yeah, and I read that you took between 20,000 and 30,000 pills during your treatment. It's a lot. It's beyond a lot. It's unbelievable. But the story might have been very different if you'd had access to a gene expert machine because we've talked about this in our community but about half of the tests that go through smear microscopy that have tuberculosis don't detect it. And so that's why Fumeza probably was told that she was negative for tuberculosis. It wasn't anything that anyone did wrong. It's just that the test isn't very good because it's 130 years old. And if you'd had that gene expert test immediately, you're right, you would have been spared so much of that. And that's why we feel so strongly about fighting for bigger, better access to these gene expert tests. They're amazing tests, but overcharging for them is causing just a tremendous amount of real harm. Yeah, so it never makes sense to me is this solution, make the solution and then you make the solution not easily accessible to actually people who need it the most. Then what is the point of doing that? Same as with better quality and same as with gene expert. Why make something and make it, make it to help, but then it's not as accessible to people who actually need it the most so that they can have quality life, continue with their lives and just be as normal as possible. That's right. It's called normal. That's exactly right. So I just want people to understand that that's the core disagreement we have with Danahar and with Cepheid, is that we believe that it is not useful to make a tool that the people who need it most can't use. And we believe what Dr. Peter Mugeni said 25 years ago about HIV treatment, where are the drugs? The drugs are where the disease is not and where is the disease? The disease is where the drugs are not. And as long as the tests and the treatments are where the disease is not for tuberculosis, we are fundamentally failing at the point of medical care, which is not to invent life-saving treatments, but to invent and distribute life-saving treatments. So I wanna turn now to Dr. Anamesh Sinha, who works at MSF. And I wanna ask you, Rock, why do we call TB do we call TB a disease of poverty? Why do we talk so much? I don't love this phrase, cause I don't think most people know what it means, but why do we talk so much about the social determinants of health when it comes to tuberculosis? Tuberculosis has classically been associated with poverty or with deteriorated socioeconomic conditions. So after a war, after we go through a tough time or in places where people are still living in poverty, you see increased incidents or increased number of people suffering from tuberculosis. As and when the status of the community improves and the living conditions get better, nutrition get better, immunity gets better, the incidence of tuberculosis gradually reduces, as we have seen happening in the US because previously US also had tuberculosis, but it gradually declined as the socioeconomic conditions improved. However, a vast majority of the cases in the world today still happen in low and middle income countries. That India accounts for around 3 million of the around 10 million cases that happen every year. 3 million is a huge number. And this will take time to improve. However, it does not mean that people who are suffering today deserve to die or deserve not to get diagnosed or treated correctly. So even though there is poverty, even though there is incidence of tuberculosis high, we still have to diagnose those people correctly and we still have to put those people on the correct treatment. Right. And to the point of diagnosing those people correctly, I wonder if you could talk about the role that the gene expert machine and Cepheid's tests play in that process and what the difference is between having a gene expert diagnosis and or a diagnostic experience more like the one that Fumaze had where it's weeks and weeks between the test and the results and often takes, often people go undiagnosed entirely. Yeah. Of the 10 million people who are estimated to have TB every year, only a few people get diagnosed with the correct tests that they need. A vast majority still get a microscopy as the baseline test. Microscopy misses out half the people who have tuberculosis. And top of that, even if microscopy tells you that you have tuberculosis, it doesn't tell you whether you have drug resistant or drug sensitive tuberculosis. So somebody might come up with a diagnosis that, oh, I've got tuberculosis based on microscopy. And then you are started on a first line treatment which is basically a drug sensitive tuberculosis treatment. And by the time you start to realize that this treatment is not working for me, it's already quite late because you start becoming resistant to all the drugs you've been taking. So there is more and more development of resistance as we have seen in many cases. What is actually needed, as Foyza was also saying, what is actually needed is a test which at the beginning can tell you whether you have tuberculosis and whether the drugs that you use to treat tuberculosis with will work or not in that particular case. GeneXpert is a test which tells you whether you have tuberculosis as well as tells you whether it is resistant or not. And then the second advantage of GeneXpert and similar test is that it tells you in a very short amount of time, within two hours it will tell you whether you have TB or not. Classically, if you have to detect drug resistance, it can take months. You have to take a sample, you have to culture the sample, the bacteria will grow, then you'll have to test different drugs on the bacteria to say, to see which ones will work, which ones won't work, that takes months. And by that time in many cases, it's already too late, patients are already suffering with tuberculosis and then you put them on toxic drugs which are not working for them. So GeneXpert solves a lot of these problems, but it's not accessible to everybody. And that's an issue. Yeah, so I wonder if you could talk about that lack of accessibility, like how often people are unable to access GeneXpert tests because of cost and whether cost is, because I think one of Cepheid's arguments is that cost is not really the, I mean, we don't know what Cepheid's arguments are because they've never spoken publicly about this, which is infuriating. And I should say Danahur and Cepheid because Danahur is the gigantic company that owns Cepheid. But I wonder if you can talk about, one of the arguments that they have used in the past is that cost is not the main barrier to access. And I wonder how you would respond to that. I don't think that is particularly correct because if barrier, if cost was not a barrier, I think most countries would be rolling it out vaguely because first of all, it solves the issues with the practitioners who have to diagnose people. And secondly, it helps the patients. So there is no reason why a doctor who's supposed to care for a patient would avoid using a test which is better for the patient. It's just because they don't have that test available within the systems. And the reason why it's not available within the systems is because most of these countries where the burden of tuberculosis is, are low and middle income countries and they don't have the resources to buy so many tests. If India had to buy for the 3 million people who are estimated to have tuberculosis, you have to test many times more people to be able to diagnose those 3 million and to be able to procure those number of tests would require a huge budget with the cost of the cartridge that currently is being sold at. So unless the costs come down, it is impossible for many low and middle income countries to be able to roll out these tests at a scale which will be able to pick up most of the cases who go missing every year. Right, right. We've also gotten a question in chat that I wanted to ask you about diagnostics because many people, especially in the US are familiar with tuberculosis testing only through the lens of skin testing. So can you talk a little bit about skin testing and the upsides and downsides of skin testing and why gene expert tests are better even if they're more expensive? And I should say they're currently more expensive. They don't have to be expensive. That's not a, like cost effectiveness is a moving target based on how much Dhanahir decides to charge. Yeah. Skin tests are tests for TB infection which basically tell you whether or not you've been exposed to the bacteria. It won't tell you whether you have active tuberculosis disease, whether you're suffering, whether you're ill with the disease or not. So a skin test might tell you that, oh, at some point in the past you were exposed to the bacteria, but that does not necessarily mean that you have the disease or that you require a particular kind of treatment. Gene expert is the one which will tell you whether you have active disease and whether you require treatment. Skin tests might be beneficial in certain circumstances. However, it is not the test of choice for the vast majority of people who suffer from tuberculosis. Right. Right. And because a lot of people have been exposed to TB, you know, something like two and a half or three billion people might test positive on a skin test. That's correct, yeah. Okay, Dr. Mitnick, can I move toward you? Hi. Dr. Mitnick and I are friends. We were friends before this. So you've been in this world for a long time. And I wonder if we can start by you telling a story or two about changes that you have witnessed in the treatment of people with drug-resistant TB after the introduction of Badakuline and the newer drugs. Sure, John, thank you. And thanks so much for organizing this. I'm thrilled to be in the company of the two of the recent winners of the Times 100 Next. I guess one prior winner. Woo-hoo! Yeah, who is in Nandita just got awarded, just got acknowledged as the Time 100 Next among the Time 100 Next Most Influential People. Although I would argue that they should be on the Time 100 Now list of Most Influential People. Exactly. Well, there's more to come. More to come. You are still young, y'all. So, John, I think it's a super important question. And we already heard from Humesa just how transformative the treatment was. She had been poorly treated late diagnosis because of the poor tests that were available at the time. And after close to three years of treatment with other regimens, even at that point, Bedakulin was able to be part of a regimen that cured her. And you, John, have observed it in your friend, Henry, as well. Many have called it a Lazarus effect, kind of like what people were saying about antiretroviral therapy when it first became available for HIV, that on the individual level, the results are nothing short of transformative. And then on the population level, on the kind of whole practice level, the same is true. Bedakulin is now the lynchpin of every single treatment for multi-drug resistant TB. That's true for adults. That's true for children. That's true for pregnant people. That's true for people who are living with HIV. It doesn't matter. It is the foundation of every single one of the multi-drug regimens. And so the cost of that drug is so important to the half a million new people, who get newly, sorry, who get drug resistant TB newly each year. And I wanna emphasize that we failed to treat so many of those people each year. We treat something on the order of 200,000 or less. Of those 500,000, maybe new cases. But there's this backlog. There's, there are these million or a million and a half people accumulating with drug resistant TB over the years because they haven't been treated. And you can actually live with TB and drug resistant TB for a long time. So bedacolin is really part of a whole treatment transformation that's kind of analogous to what happened with treatment for run of the mill TB in the 1970s when we got these very exciting now old drugs called pyrazinomide and rifampin where treatment was shortened from 18 months to six months. And that's exactly what we're seeing because of bedacolin and some other components now. And so more people can get treatment for less money, less health system investment, less health system investment in the toxicities that Pumesa and Nandita were both describing. Pumesa thought she took her pills. Okay, that was done for that. But no, it wasn't because then she vomited. And that takes a lot of support for people to make it through that care. But if you have something that's more tolerable like the bedacolin based regimens, there's so much more promise. Yeah, and for those who don't know, Dr. Mitnick was a really important part of the research in Peru in the early 1990s, proving that MDR TB could be treated effectively in low and middle income countries, which really transformed the way that we treat MDR TB. I mean, Dr. Mitnick once described to me the previous WHO regulation before the evidence came in that it was possible to treat MDR TB effectively in poor countries. She described it to me that the WHO's regimen was essentially let someone sit on the side of the road until they die. And now more people are able to access treatment. I think it's really important to understand that progress is possible and that we've seen progress. But progress is harder than it needs to be. And as Fu Mesa said earlier, like one of the frustrations here is just like, well, why do you develop these technologies if you don't want people to use them? Like surely the motivation can't be only money. Like nobody when they were like nine years old thought when I grow up, I wanna be an executive at a pharmaceutical company so that I can minimize the number of people who can access my life-saving treatments. And I don't think people think that way, right? I genuinely think most people don't think that they're bad. I genuinely think that like these are people who are trying to make the world better. And I just think sometimes people need polite but insistent reminders that the best ways to do that sometimes don't involve maximizing profit or at least don't involve maximizing short-term profit. Cause I would argue that Danaher would actually make a lot of money if they were selling 45 million TB tests to India every year. And the only way they can do that is by lowering their prices. Dr. Mitnick, I also wanted to ask you what you would say to these pharmaceutical companies. How would you talk to them in talking about access to drugs like pedaciline and the absolute importance of those life-saving diagnostic tools like the GeneXpert machine? Yeah, I think you were starting to go down that path, John. And I guess what I would say is there are so many other direct and indirect benefits of working in this space despite the protestations of these companies to the contrary. They get really good PR for doing good work for people who are most in need. They can have very motivated employees and good retention which costs them less. As you said, these are not inherently bad people. People don't go work in industry in pharma or in biotech because they want to restrict access. That's not why they do it. They do it for the thrill of discovery and discovery that will help people. So if it doesn't help people and they get and there are campaigns like this that's got to be super demoralizing. But if they can really capitalize on the benefit of this work internally as well. They also, these companies get exposure to emerging markets for other products by getting their name out there. Johnson & Johnson, as you've made so clear, John, it's a household name in the US and they have products all over the world. So, you know, Badakwilen helps bring name recognition to them and allows them to sell more products on which people's lives do not depend. And then I would also argue that they already get some of these benefits. The public funding that substantially reduces their investment in R&D. We know that estimates of the investment made in Badakwilen are that somewhere between 1.6 and five times the investment that Johnson & Johnson made in Badakwilen was made by tax dollars from people around the world, largely in the US. And that includes investments in research and development. That includes investment in early access. That includes paying for a phase three trial that Johnson & Johnson should have paid for. They've also gotten a waiver, excuse me, a voucher from the Food and Drug Administration that they can use for another drug to get an accelerated review. So there are all kinds of benefits is what I would say to them. They don't have to rely on unlimited profits. Yeah, Matt just said, this is crazy to me. I had no idea how egregious this was. Good, that's why we're doing this, Matt, is to call attention to how egregious this is and to try to help each other work together to help these companies understand that they can make better choices and that those choices can still be good for business. As Dr. Mitnick just pointed out, I do wanna say, there will be info about this after we finish the live stream, like in the comments and in the video info. But if you're as inspired by this conversation as I am, please reach out to Dan or her, tag them on social media, reach out to them via phone, although they did shut down their public facing phone line yesterday and it's still not back up. But there is another number that you can call and leave a message, be polite, of course. The person who's answering the phone is not the person who's making the decision. But I think it's important for them to know that we're paying attention and we're gonna keep paying attention and this is not a two day campaign. Now, this is something that MSF and Nandita and Fumeza and Dr. Mitnick and Dr. Sinha have been working on for years and years and years. And so this isn't day two of two, this is for them day 1,388 of however many days it takes. And I think it's really important for Dan or her to know that, to know that like this isn't going away, this isn't a storm that's gonna blow over. And so please reach out to them on email, tag them on social media. It works, they don't like it. We know they don't like it because there are a lot of Dan or her and Cepheid employees who are in my DMs telling me that they don't like it and also telling me exactly what Dr. Mitnick said, which is that they didn't get into this business and dream about doing this work in order to deny patients access. And so I think the internal pressure is really key as well if you work at Dan or her or Cepheid or know someone who does, just know that that internal pressure is also mounting and working. So I wanna open it up for questions now to our lovely community. You can flood the chat with questions because I'm really good at reading them. Reading the questions fast after 17 years of doing live streams. So, and then I will ask the questions. But yeah, do try to be respectful. I like having DMs that are only about tuberculosis actually. It's great. It's very clarifying. So no problems there. We have not heard anything unless something's happened in the last hour. We haven't heard anything from our friends at Dan or her and Cepheid, which tends to be their usual common strategy, but we will eventually because we'll just keep escalating. So yeah, so please leave your questions and comments and we'll go from there. I'm so grateful to be able to talk with all of y'all and yeah, thank you. Elian asks a great question that I don't know if we have an answer for is do we know how much of the percentage of the development of GeneXpert came from public funding? I don't know if anyone wants to comment on that. We know that it was $250 million. I don't know what percentage that was of their total funding. Ooh, look, it even appears on the screen, the question. Goodness gracious. John, I don't know if others can answer that question. I can't, but I can just say generally that this is part of the problem is a total lack of transparency about the cost to manufacture the individual cartridge, the costs of investment in the whole in the whole product development. And so we're left either doing independent studies like the one that MSF commissioned to come up with the cost of the cartridge as being between $350 and $4 or just waiting for them to say something. Right. Yeah, John, if I may add, Cepheid received around $250 million in public funding to develop the expert technology. Yeah, that's a lot of money. A lot of that came from the NIH. A lot of that came from American taxpayers. A lot of it came from taxpayers outside the US as well. And one of the frustrations here is that when taxpayers pay for something, like I remember once I had an infection behind my eye and I had to get this very expensive antibiotic that was $12,000 a pill. And I remember my doctor saying to me, you know, what's really frustrating about this man is that you're paying for this twice because we also paid for this drug to get developed. And I think that's very true. Nandita and Fumeza, we've got a couple of questions for you or a lot of questions for you actually. I bragged about how I was really good at reading questions but the questions are actually coming in faster than I'm used to. I will say if the 1148 people watching right now were to all reach out to Danher at the same time, it'd be a good morning to push them to respond in some ways. There is a list of Danher's investors that Nerdfighteria has researched. We're reaching out to some of those investors. You can find out more at our discord at nerdfighteria.com. So Nandita and Fumeza, can you talk about some of the experiences of other patients you've known including people, friends you've lost? I think it's really important because your stories are so inspiring but I think it's really important also not to forget the people who joined us in this fight and aren't here to celebrate Johnson and Johnson's expansion of Badakuline Access and have passed away. I don't know if that's something that you'd be comfortable talking about but I think that's something that I try to talk about in each of these things that I do because I just think it's really important to remember those people and remember their contributions. Either of you can unmute if you want or if you don't want to answer that question, just stay on mute. No, it's fine. I think I can go. So yes, because I was mostly in hospital for almost a year. So obviously you sort of like make relationships and get close to people. And yes, there were people who were close to me that I lost who could have been saved if they were like better drugs at that time that I had TB. But then another problem is that it's not only the drugs or the diagnostic, there's also stigma but it's still a huge problem when it comes to TB. I mean, I've met people who don't want to disclose that they have TB because it's for some reason, it's been said to be a poor man's disease by the media. It's almost associated with being dead and all of those bad things. But then it's sort of like also stop people to actually talk about it, make it as normal as possible. There are very few people who actually stand up and talk about having TB or talk about their experiences and that is the problem because we need to break down the stigma that people can be able to seek the care that they need to be able to get the help that they need easily and also as comfortable as possible. But then, yes, we need to break down the stigma and to Johnson and Johnson and Sophie, we have many problems and many gaps in TB. We can't also be worrying about TB medication that is available and also the diagnostic that is available. We need to have one approach at a time and you're making very difficult for us as TB survivors and actually people actually care about TB. Yeah, Nandita, can you talk a little bit about stigma as well? I mean, this is something that I've seen over and over again that the stigma is just so complex and profound that it really does seem to limit the ability of people to live even years after they survived TB. So yeah, so TB is a stigmatized disease and I think over the years, my hope is that as more and more people like us come out and share our experiences, it will give a lot more other people the courage to come out and also feel better about the fact that there is someone that they can look up to during their treatment. But TB is a stigmatized disease because A, it's contagious, but not all forms of the disease are contagious. So I remember that when I got TB, though it was not a contagious form of the disease because I had it in the intestine, still I was told that please don't talk about this to anyone or please don't share about this to anyone because of the fact that TB is known to be contagious. So everybody, there's a possibility that people could start shunning you or people could get distant from you. And it's not about blaming the other person because the knowledge about TB is just so poor among the public that any person, let's say tomorrow, an acquaintance knows that I'm having TB, the natural reaction would be that a person would get scared that, oh, okay, am I, will I also contract the disease? But even though it was not contagious for me, I was still told that you don't, you be a bit quiet about it. So I would often tell people that I was having intestinal infection. So it was a very vague way to tell it that I would say it was intestinal infection. I would never tell the world of the disease very openly to anyone apart from a few closed members of the family. And I think this is not just, not my experience alone, but it is an experience with a lot of other people as well globally, I say, because of the fact that people don't know that TB is not contagious after a couple of months. If you take your treatment for the first few months or weeks very well and you adhere to the treatment, you do become non-infectious. So these kind of minor details about the disease need to be out there more openly so that the other person can live in sort of less fear about it and the person will feel more loved and approachable. So I think that those are one of the reasons I think. And also because of the fact that, again, because there's the knowledge about the disease continues to be so poor. So there is a possibility that, for example, people don't know whether, let's say, whether you can have a partner during your sickness, whether you can date someone, whether you can have a normal life, all of that is possible. That's the point. So you can do everything, but adhere to the treatment and follow the treatment and then have, more importantly, have a very good nutritious diet and then you will be fine. So these kind of important positive messaging as well as important points that need to be out there so that people know exactly they don't live in constant fear. So I think that is where I feel the problem lies right now. Yeah. Yeah, no, I think that's so true. I, what you were just saying reminded me of a memoir I read by a woman who lived in the, she's still alive actually, but she contracted TB in the early mid 20th century when she was a child and lived in the United States in sanitariums while she was trying to recover before eventually getting access to streptomycin and having her life saved. And she wrote that when she finally was able to go home she had forgotten what it was like to be touched with love that she, like her, with her nurses and everything maybe they would turn her over or they would pick her up but to just be held, to just have her face stroked that was something that she had not that hadn't happened in so long since she was a little kid because people were afraid of her. And that's so heartbreaking. And to your point, it's so unnecessary because we know that once people have been in treatment for a few weeks, they're no longer infectious. They're actually like much less of a threat to me or to you than, you know just walking around or being on a crowded bus would be. So I want to, we only have 10 minutes left and I have to go upstairs because I did not plan my battery life very well. So as I walk upstairs to plug my computer in this is a super professional live stream. I want to offer each of you the chance to kind of give us some closing remarks if there's something that you wanna say that you haven't said something that you wanna tell people about your experience or about what you think we can accomplish together and maybe I'll start with Dr. Mitnick. Thanks, John. And thanks, Nandita and Pomesa for those comments about stigma. I guess maybe I would wrap up with two things, one unplanned on the stigma front. I generally the response to destigmatizing is to tell the people with the stigmatized condition to disclose that somehow that's supposed to magically destigmatize the condition and it puts more burden on the person who's already unwell in the case of say TB. And I just wanna highlight what you guys were all saying that if diagnosis is rapid, if treatment is rapid people become non-infectious pretty much as soon as the treatment starts all of these are ways to destigmatize the disease and for communities to understand that the best thing they can do is support people to get prompt care and help them through care. So that would be one remark on this issue around the profits from these companies that are making products that are essential to the lives of people with TB or affected by TB. I would say that unlimited profiteering kills and that we have to have limits on profits on life-saving treatment. And it's not either or there is still room for profit to drive innovation but there can still be limits on it. And in the same vein, no more of this double dipping no more you get to get public funds to develop something and then you get to profit endlessly from it. I think you're on mute, Joan. Okay, great, thank you Carol. I was gonna turn it over to Dr. Sinha. Yeah, I think what Nandita and Fumeza have brought out is what many people go through every year and for the last many years. What could be done is the US Diagnostics Company, Cepheid and its parent company, Dana should drop the price of gene expert cartridge to $5 for all diseases including tuberculosis which would improve the diagnosis of tuberculosis, find those people who are missing and be able to start them on the correct treatment early so that they could have a better life and a better success of treatment. Yeah, yeah. Fumeza? So when it comes to testing, as I said, it's not easy to just wake up and go to the clinic. So yes, we need to break down the stigma but there's also another thing called universal testing for TB also known as TUTT. This provides like annual TB disease testing for people living with HIV as well as testing of all contacts of people with TB and also people who have been previously tested for TB like myself and Nandita. So in a South African Cape Town, those South African contacts and TB services should also be available close to where people live because you find that people because of stigma, instead of going to the clinic that is close to them, they go to another clinic to avoid being seen by the community that they live in. So yes, there should be, as I said, universal testing for TB and also it should be available for where people live, where they believe is. Thank you. Yeah, no, I think that's so important that if you ask people, it's so much to say, to say like you, the only way you can get treatment and diagnostics is to pay for transportation, to walk long distances. That just makes it inaccessible to so many people. So I think that's such an important point. Thank you. And Nandita. So I think everyone, Dr. Nimesh, Dr. Carol, for Mesa, I think they've made very important points, but I wanted to tell a word on the patent proposition that we won, was that we had our share of skeptics along the journey. We had people, maybe off the record, question us as to what was our motivations behind doing something like this, because we were not going to get pedacolin in any way. Both of us, we had completed our treatment by then and we were leading perfectly okay lives, but what were our motivations? We got questions like these as well, but we also were asked, okay, are you against innovation? Why are you against innovation? Do you have any idea about how the economics works behind this? And I think all of that sort of questions have been put late to rest, hopefully, with what has happened. And I hope that today's discussion sort of throws a light on all of these questions. Is that A, I think neither of us, none of the panelists, but I can speak for myself at least, is that I'm certainly not against any form of innovation. I want what we want is that the innovation actually reaches more people. That's all. That was the main motive behind this. It is not about us, not understanding the economics. I think that's the most frivolous comment to say because both of us, we are highly educated people. We know what we were talking about, but things like these, I think I hope the message goes out loud and clear is that what we want is that essentially is that it reaches the people it has to reach. I think science has to benefit everyone and not just some people. Yeah, I mean, innovation, you're in favor of innovation, I would argue, you're strongly in favor of innovation because innovation is not just innovating the number of drug compounds or tests that we know how to do. Innovation is also innovating how we get those tests and compounds to the places they're needed, how we produce them at scale, how we know all of those questions of innovation. Like we talk a lot about Alexander Fleming discovering penicillin in 1928, but it wasn't Alexander Fleming discovering penicillin in 1928 actually wasn't the big innovation. The big innovation was in the early 1940s when large groups of scientists working together figured out how to make penicillin more than a drop at a time so that we could actually get it into people to help them. And to me, that's the work that you're doing, which is I think the much more innovative and important work. So I'm just so grateful to both of you, to Fumeza and Nandita, our newest Time 100 Next fellows, but just two people who I admire so much and I know will be continuing to lead the charge toward breaking down that stigma, toward increasing access to diagnostics and drugs, starting just in just a few days at the UN General Assembly and the high level meeting on tuberculosis. So thank you both so much, Dr. Mitnick for all of your great work, for leading the way, for leading me on this path. I'm so grateful to you. And to Dr. Anamesh Sinha, whose work has saved countless lives, we are so grateful to you. The last thing I wanna say is that we're really grateful to the people who are here, who are in this audience with us, including Shriha, who just called the Cepheid phone number and got to talk to a person within just two minutes. So good job. She pressed one, two times and got to talk to a human being. So thank you for doing that. Thank you for continuing to keep up the pressure on Danaher. Thank you for continuing to monitor Johnson & Johnson and pressure them to expand access to Bedakalene. And thank you for being part of this community with us. What we're accomplishing together is another reminder that human beings do very little alone. Almost everything that we do, we do together. And what we can do together is so much more than what we understand sometimes. I know it's easy to feel powerless. I know it's easy to feel despair. I know that the problems we face together are overwhelming and at times feel utterly intractable. It's easy to feel hopeless in the face of them. But I still think that hope is the correct response to the miracle of human consciousness. I still think that we can make a better world together. And that starts every day. Every day we have that opportunity to work together for a better world. I'm so grateful that y'all are working with us and I'm so grateful to be able to work with the four people who joined us on our panel today. So thank you very much. And as we say in my hometown, don't forget to be awesome.