 For more videos on People's Struggles please subscribe to our YouTube channel. Hello everyone and welcome to the new issue of People's Health Dispatch which is the health publication by People's Dispatch and the People's Health Movement dedicated to struggles in health and health workers. So today we will be talking about what has been going on in the field of TB Advocacy. So we are joined here by Nandita Venkatesan who is a TB advocate. She's also a journalist and a health activist for many years. Previously she has worked in media, she has covered health systems in one of India's largest financial newspapers. But what is one of the most interesting things for us today is that Nandita is also a TB survivor and her personal experience has fed into her activism and today she continues also to advocate for the rights of people with TB all around the world. So thank you Nandita for joining us today and we hope to hear more about the recent developments in this field. So today we wanted to start with a bit of context. So for the past year or so we know that COVID-19 has disrupted the provision of health services in all the world and this also includes care for TB patients. So to begin with can you tell us something more about how TB care has been affected during the pandemic? So thank you so much firstly for having me and for including the voice of someone from the community and from the survivor's perspective. Thanks a lot for treating us as vital stakeholders in the conversation. So to begin with TB care firstly even before the pandemic was not really in the best of shape but the pandemic sort of appended and really disrupted the whole care that TB patients were receiving. So if I broadly put it if we look at two categories one is diagnosis and one is treatment and so in the diagnosis side because a lot of TB care TB diagnostics were repurposed for COVID for example you have the gene expert they were repurposed for COVID patients. So TB a lot of people had to undergo delayed diagnosis they got diagnosed very late because probably the the gene expert was not available to get to diagnose for you know drug resistance. This is a very gene expert is a sort of a test that is a very baseline test as in suppose if you're showing symptoms of TB then you take an x-ray but then you also check for you do the gene expert test to sort of know whether are you resistant to any of the drugs or are you not and then accordingly on the basis of your gene expert test is how your entire line of treatment is decided but gene expert itself was repurposed for COVID and that is how the loss was ultimately borne by TB patients because of that and it's only I feel very sad that it's like pitting one disease against the other when both are equally important you know you're taking care from one side and you're giving it to the other whereas I also understand COVID is very important but it should not come at the cost of neglecting other diseases as well yeah that was the thing where patients had to face late diagnosis also because their you know countries went through a lot of lockdowns and shutdowns so in countries where the health system is not very good for example even in India in the rural areas for example where people will have to walk miles to get to the nearest health center there you had to go and collect your report and think and you know basic things like this were not happening because because your transportation was shut so lockdowns affected a lot of transportation etc so patients could not go out the other thing was that because diagnosis was going late and people were generally stuck in their houses TB being an airborne contagious disease where it can spread there was also the very big risk from what doctors also says that you could end up spreading amongst your family members because you're just cooped up in one room with everyone because you can't travel out you can't do anything because COVID has imposed these restrictions on movement etc and you're not even able to get proper care but because because you know hospitals are not there they have been they have all most of the most of the hospitals and care were diverted for COVID care so that came at the cost of another infectious disease and that was and the other thing was that because diagnosis was late and the second aspect of it was treatment so treatment that at least I could say in India for example and I'm sure a lot of other countries have done this where the governments put in place a provision of giving medicines at the doorstep of patients quite a number of countries I think as far as I know Indonesia and India as well they did this provision for providing TB medicines at the doorstep because I think even the governments did realize that you know you can't come to a stage where patients can't access medicines and TB treatment is a way where you have to eat medicines every single day and you know you can't afford to miss out on even a single dosage so that is there so though even though this provision was made the problem was that the problem was that at least in say severe forms of the illness for example I'm talking about drug resistant TB you have provision of injectables you are injections are given to patients as a way of as a way of medication so these injectables you need a nurse to come and or you have to go to the health center all of this so a big part was that your patients were not getting access to these injectables especially patients were having drug resistant TB and things like that so treatment was also disrupted and what we saw all of that we did not see much of public discourse around it unfortunately through last year but we saw that in the numbers that have come out in the WHO report it's shocking that deaths have gone up for the first time in the past decade and it is exactly what every one of us had feared would happen in fact it's even worse than what what a lot of us had anticipated but deaths have gone up where the cost of inaction has been borne by the by the patients the extremely extremely varying situation because of this yeah and of course there is something else that you mentioned already and that actually the problems that appear during the pandemic where they're from before too and that they were actually also quite connected to how rich countries and how the pharma industry perceives TB so maybe just for a little bit of a broader context could you walk us through what was happening before the pandemic so what was going on in the field of the research for TB treatments and vaccines and other products so in terms of vaccine firstly we don't have we have been just using the BCG vaccine which is 100 years old BCG completed 100 years this year in September and I think yeah September or October and we have been using the vaccine that is that has been proven to be ineffective every one of us I took the I took the BCG vaccine and yet I contracted TB and a very severe form of the disease I know of several others who have taken the BCG vaccine that should have ideally given us some form of protection and they have contracted the illness so BCG vaccine even even if you don't go by these kind of anecdotal testimonies everyone even scientists and researchers have agreed that we need a newer vaccine for TB and unfortunately because because the numbers that because TB is seen as a disease of poverty and TB is also seen as a disease which and the numbers are high mainly developed underdeveloped and developing countries so pharmaceutical companies majority of which are based in the western countries they don't want to pay attention to this and we are seeing that we there are barely any vaccines available we don't have a vaccine for TB or an effective vaccine apart from the BCG they were one or two candidates that were funded by the Gates Foundation that there was news that Gates Foundation was doing some funding for TB vaccine and some candidates had reached a certain stage where they felt that a TB vaccine could be could be in sight but again there has been no movement after that. I also feel that it is now important that developing countries with manufacturing capacity whether it is India or whether it whether it is countries in South Africa we now need to step up and do something because it is very clear that pharmaceutical companies clearly are not interested and we and the more I see what played out during COVID you know in terms of vaccine and equity etc it all the more depresses me that this will a similar thing a sort of similar indifference will has played out in TB and will continue playing out in TB so I feel that it is important that countries like India take matters in their hands and give give more money towards research and development and and you know sort of promote companies here to develop vaccines for TB otherwise I don't see anything happening right now it's a sad state of affairs and in terms of medicines in in terms of drugs we had like I said TB you have something called drug resistant TB as well and in that the medicines being used were extremely obsolete they are very toxic medicines which caused number of side effects one of which I had to bear as well I ended up losing my hearing completely because of because of a medicine that was supposed to have cured me in the first place but but but I ended up losing a big part of who I am because of because of these medicines and we had two new candidates from john's two new medicines john's from johnson and johnson it's bedak vilan and from utsukha it is delamanid two new medicines in 40 years and finally even then the access to these medicines has been very less we have seen sure countries reporting shortages for for delamanid drug because it's considered very expensive for patients in india at least I know it costs over I think anywhere over 50 000 to 1 lakh if I'm that it's a huge amount to be spent for just six months of medicines so clearly the access is a big problem right now even though we have the medicines yeah and I think that's one of the crucial points that maybe we should also stress that these things this kind of indifference by rich countries and by big pharma it actually has a real toll on people so how has the tv community been affected by by the disregard by both the rich states and the pharmaceutical companies so it is first is that we are having recurring shortages just recently we we have sent previously in the past the tv community has sent letters to stop tv partnership to WHO last year or last year during the height the height of the pandemic even in the previous year community the tv community had sent letters flagging of shortages of certain medicines and even in even in india since I'm from india I can speak that we also recently sent a letter to our health minister as well flagging of shortages of drugs so shortages are are are common we need people to understand that it that the impact is real wherein for example we saw that patients are still taking tons of injections when you have a better drug in terms of an oral medicine that's bedak vilan and and delam and for drug resistant tv and these medicines these are young patients tv you generally tv affects the most productive population even I contracted it at a young age in my 20s so the costs are very real and people don't seem to be realizing that but we do see that the health advocates in tv are really really active and you are pushing for a lot of things and just recently there has been this open letter which was sent to g20 leaders and it's actually calling for a reversal of this under investment that we have been witnessing and for a stronger push to find new vaccines and new treatments so can you tell me a bit more what is it that health advocates are hoping for what would be like the ideal situation and what do you see happening so the ideal situation we we are seeing is that we want a tv vaccine in the next nine years time 2030 is what we have said we have said we need a tv vaccine in place covid has shown us that if we get our act and will together we can do wonders it or it we got an entire vaccine rolled out in a year's time so it's not that we don't have the will we don't have the expertise everything is there in place or nor is it that we don't know if people say that we don't have the funding even that is there if we covid showed that science can go leaps and bounds and we can actually get a good vaccine in a year's time we are saying that hey it's we're not asking it for a year we are saying give us by 2030 we need a vaccine because if not now then when because the tv the wh your report has clearly shown that the devastation in tv is big it is not it is it is shocking like i said and it is saddening that the deaths have gone up in a decade and what this means is that advocates have been working for several years they have seen all the gains getting reversed in just in just a year's time so we what we are asking for is a now now that we have seen that action can you know if collective action is possible let's direct it towards tv and let's see to it that we have a vaccine in place we are also calling for increased funding because for example in in the global fund against tv malaria and hiv among all of this tv has one of it has i think the lowest funding or it even though the number of the number of tv deaths and cases is more than is more than hiv today so what we are pushing for is that put your money where the mouth is the that is the phrase we are looking at that that we have done all the talk we have had people coming to big conferences and talking away and saying oh we'll do this we'll do that now back it up with funding so we are demanding for a increased funding for tv and we are we are saying this we are saying this with complete proof from the WHO report that the that the damage is huge and tv is an airborne infectious disease it is not it can spread and no one can be spared it could be anyone there's a very prominent pulmonologist in India who had made the statement that that it could in in a car it could contra that if the driver has tv even the rich person sitting behind will not be spared of it so it tv does not discriminate between people because it's in the air so we are asking for a increased funding we are asking now we are getting bolder with our commitments and saying that we need a vaccine now and what we are saying is that we don't need just one candidate for a vaccine we need at least five of them just don't give us one candidate we need five candidates we need even 10 candidates even that works but all of this i know requires funding it's easy advocates tv advocates we are a lot of them are realizing that it's easy to make tall commitments but unless it is not backed up by money nothing will move ahead so we are looking at a two pronged approach right now where we are pushing for the commitment and we are also asking for the funding so that is where the g20 letter thankfully emphasizes on that as well and we and the importance of vaccines we have seen in covid how vaccines have you know have have managed to bring countries out of lockdowns and shutdowns and it is i keep saying the fact that tv is a disease that that affects in your most productive years i've told this before as well but i'll reiterate it and unless you don't you know for all leaders who speak about we want we want a bright future for youngsters today we are seeing in all in all cop26 everybody are saying that you know we need to be the future generations will curse us for our cost of inaction that's exactly what we feel will will happen in tv as well if you don't take action now and get a vaccine in place and see to it that the numbers go down because we have seen how the numbers have gone up the cost of lack of diagnosis the delayed diagnosis everything we have seen in the wwh report those numbers are very real and if i don't think that we can afford to have tb for another generation after this something has to be done to stop at the tracks now and i feel vaccine is a way out of that thank you so much for joining us and yes i hope that in the future we'll be able to cover more also on yes the what the progress yeah hopefully we will have some good news on the vaccine front and and yeah more more information