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- Meaningful community engagement in the fight against tuberculosis
As a multi-drug resistant tuberculosis (MDR-TB) survivor and an internationally recognized advocate, Ms. Oxana Rucșineanu, Lead of the Moldova National Association of Tuberculosis Patients “SMIT”, delivers a powerful call to action. She brings an indispensable perspective, reminding the global health community, including researchers and clinicians that scientific innovation in tuberculosis is only effective if it successfully reaches the vulnerable individuals experiencing this disease first-hand.
When the statistics of tuberculosis are laid out—millions of active cases, hundreds of thousands of deaths, and drug resistance rates climbing across entire regions—it becomes easy to reduce a human crisis to a spreadsheet.1 Yet, statistics do not seek care, and numbers do not swallow pills. Without genuine, structural community legitimacy, the sophisticated pipeline of diagnostics, drugs, and vaccines for TB will fail to reach the populations who suffer the most. Bringing a human voice and human faces to figures, numbers, and statistics is absolutely critical and important. What I know from my personal experience as a patient is that meaningful community engagement is not a box-ticking exercise: it is an absolute requirement for clinical implementation to actually work in a real-world setting.
Surviving multi-drug resistant tuberculosis (MDR-TB) in environments lacking immediate access to localized second-line drugs means spending twelve agonizing months on ineffective therapies designed only for drug-susceptible strains. When appropriate treatments finally arrive through international donations, the recovery process itself presents a brutal physical tax. Patients are very well aware of the fact that they must follow medical protocols to be cured. That doesn’t make the process any less traumatic: Injectables, side effects, and dozens of pills to be swallowed every day.
The intensity of the treatment regimen is even worse for individuals whose infections progress to extensively drug-resistant tuberculosis (XDR-TB), which often leads to a complete loss of standard second-line options.2 For these patients, survival depends on an exhausting journey up to 24 months using individually constructed, experimental regimens brought to localized clinics only through direct pressure on international research institutions. Activism is born out of this desperation, transforming personal survival experiences into a collective political demand for systemic health reform.
Defining community engagement
To build a patient-centered framework, healthcare stakeholders along with policy decision-makers must stop using "community engagement" as a loose catch-all phrase. The definition matters because blurring the lines between distinct operational roles creates weak public health practices. Globally, community action splits into two entirely different functions.
In regions like Eastern Europe and Central Asia, community engagement translates mainly into direct service delivery. Networks act as structural extensions of underfunded health systems, physically accompanying patients through treatment and managing the severe social vulnerabilities that cause individuals to default from care. Conversely, in regions like Africa and the United States, where the largest share of clinical trials are executed, community engagement means direct participation in the research process itself—influencing everything from initial protocol design to final results dissemination.1,3
Both models possess immense value, but their objectives are distinct: Research focuses on generating knowledge and establishing evidence, while service delivery focuses on translating that evidence into real-world care. When a community is restricted purely to service delivery, it is denied a seat at the table where research questions are framed. When a community is involved in research but excluded from implementation, breakthrough innovations remain trapped on paper, completely failing to reach peripheral clinics. My personal perspective is that genuine engagement must be treated also as an outcome, not only a process. It requires a dedicated, financial investment in the skills and competencies of patient networks so they can act as equal partners throughout the full process of care.
Structural protections: The Moldovan case study
The power of aligning clinical innovation with community legitimacy is clearly visible in the Republic of Moldova. As one of the early nations in Eastern Europe to systematically roll out short, fully oral treatment regimens for drug-resistant strains, the country has achieved operational results previously considered impossible in high-burden settings.4 A study conducted in the eastern European and central Asian region, including Republic of Moldova, found overall treatment success rates of 83% for a modified short-course treatment for drug-resistant TB, which also proved to be a more cost-effective option compared to the standard of care.4
This progress succeeded because policy implementers stopped treating medical adherence as an isolated moral failure of the patient. Instead, Moldova went through deep legislative modifications to its national medical insurance framework, introducing a monthly social protection benefit that guarantees temporary disability allowances covering up to 100% of lost wages for the entire duration of therapy, for those officially part of the labor force at the time of diagnosis.5
The public health logic here is straightforward. Health systems cannot simply ask a vulnerable patient to “just swallow your pills” while ignoring the structural poverty surrounding them. By providing guaranteed material and or financial support, the state actively mitigates the catastrophic out-of-pocket costs that typically drive households into absolute destitution.5 It is a structural solution to a structural disease, directly addressing the underlying vulnerabilities of undernutrition and financial displacement.5
Bridging the ground-level research gap
From a patient’s point of view, this structural alignment is exactly what is missing from standard clinical trial models, as the high treatment success rates recorded within clean, hyper-monitored research settings may erode when deployed in the field. Far too often the results within a study regarding treatment success are quite different from what is happening on the ground. This disparity stems from the fact that clinical trial eligibility criteria routinely exclude the very individuals who dominate the real-world epidemiology of tuberculosis: People living with complex metabolic comorbidities, severe substance dependencies, housing instability, or deep social vulnerabilities.6,7
When research studies systematically filter out complex, non-compliant populations to protect trial metrics, they create a severe implementation mismatch. Without community co-ownership from the earliest phases of study design, the resulting innovations arrive without the social legitimacy required to navigate real-world barriers. Similarly, without community buy-in, the implementation of any research or intervention will take more time and incur greater transaction costs. Unfortunately, such clinical delays can carry a lethal cost for drug-resistant patients who are running out of time and cannot survive a traditional ten-year research cycle.
Ultimately, for the patient community it is essential that health systems stop prioritizing the mechanics of the disease over the realities of the person. Stigma, economic exclusion, and institutional isolation remain the true final vectors of transmission, blocking vulnerable populations from accessing the quality of care they fundamentally deserve. We do not need to prioritize disease over the patient. Rather, the patient must be the absolute center of research and innovation architecture.
Word TB Day 2026: Connecting clinical innovation and the patient journey
Watch Prof. Dr. Christoph Lange and Ms. Oxana Rucșineanu discuss where the global fight against tuberculosis stands and the urgent actions needed to overcome this devastating disease.
This transcript was generated using an AI-based transcription tool and may contain errors. It reflects the spoken content of the recorded session and has been formatted for clarity.
Transcript for IRIDS Virtual Science Talks 2026 #3 TB Day video
This transcript was generated using an AI-based transcription tool and may contain errors. It reflects the spoken content of the recorded session and has been formatted for clarity.
Hello everyone, and welcome to IRIDS, our international Roche Infectious Diseases Virtual science talks, and thank you for joining us today. My name is Nina Gurmeet. I'm the global medical affairs lead for infection and immunity at Roche Diagnostics. And it's my great pleasure to welcome you to this webinar titled world TB Day Connecting Clinical Innovation and the Patient Journey.
Our session today is timed to commemorate the World Tuberculosis Day, which is marked each year on 24th March and as such. This is an occasion to raise awareness, advocate and participate in global efforts to help eliminate TB. So tuberculosis remains one of the world's deadliest infectious killers despite being preventable and curable. And while the pace of innovation has been increasing, significant gaps in the care cascade persist.
And today's session will connect very recent clinical research and developments with the perspective of patient advocacy, encouraging a deeper understanding of the science and the community engagement behind tuberculosis. It's my great pleasure to be joined by our two a very esteemed speakers, Professor Christoph Langer, who will provide his expert overview of the latest research and clinical developments in the field, and Mrs. Oksana Yano, who will share her perspective from the Patient and Advocate site.
And she will highlight how the community engagement can ensure that medical innovations reach the populations they are intended to serve. And we will then conclude the webinar with the Q&A session moderated by my colleague, Zune win, and there will be an opportunity to ask questions. This webinar will last for one hour. If you have a question, please submit it any time during the presentation or during the Q&A session.
And you can do this by clicking on the Q&A button in the webinar window. And with that, we are moving into the first session, which will be presented by Professor Christoph Langer. He is the medical director of the research Center Borstal in Leibnitz, Lung Center in Borstal in Germany. He is a professor of Respiratory medicine and International Health at the University of Lubeck, and also head of the Clinical Tuberculosis Unit at the German Center for Infection Research.
Professor long also serves on the board of Directors of the union, which is the largest professional society for tuberculosis and other lung diseases. Professor Lang is the founding chairman of the Tuberculosis Network European Trials Group called Tibet, and he is one of the clinical leads of the unit for TB project, an international clinical trials platform for evaluation of the novel anti-tumor colossus medicines operating in Europe, Africa, Asia and South America.
And without further ado, I will hand it over to Professor Lang for his presentation. Looking forward. Thank you very much, Nina, for the very kind introduction. Can you see my slides? Yes, yes. Okay, so it is a pleasure to be invited here and to be joined with almost 200 colleagues now who are online and to discuss the global developments in tuberculosis, as you know, who is estimating that the quarters of the world population is infected with Mycobacterium tuberculosis and this infection is causing 10.7 million new tuberculosis cases annually, according to the population.
This is an incidence of 131 per 100,000, which has not changed very much over the past decade. A quarter of all individuals affected by tuberculosis live in one country, that is India, and any solutions for tuberculosis that do not have India into account will not work on a global level. 11% of those affected by tuberculosis are children, and the diagnosis of tuberculosis in children is especially challenging, with many children labeled with a diagnosis of tuberculosis by clinical scores but without microbiological confirmation.
5.8% of those affected by TB have HIV co-infection. And that is a great success story that the number of HIV infected individuals came down dramatically. It was twice as many to one decade ago as it is today. And this is not the result of better tuberculosis control, but it is the result of the rollout of antiretroviral therapy in HIV high burden countries, which led to better population wide immunity in these populations.
And that led to lower cases of tuberculosis. About 3.6% of those affected by TB have resistance to revamp in the bacteria. And despite all odds, this number is going down and not up, it's still those who are affected by drug resistant TB experience a higher level of drug resistance in recent years, and it's one of the big challenges to control tuberculosis, to control the emergence of tuberculosis, track resistance.
And finally, there's still 1.23 million estimated deaths attributed to tuberculosis in the year 2024. This is the second highest number ever reported by the WHL, and it's the leading cause of death of all infectious diseases, with more casualties than due to malaria and HIV combined. If we look at the W.H.O. reports from 2027 till 2024, you see that we know where near elimination, we're actually at the peak of the tuberculosis epidemic and absolute numbers with the highest number in 2023, 10.8 million affected individuals.
But still 10.7 is the second highest. So we're nowhere near to end tuberculosis. We have problems to control tuberculosis at the moment, but I guess we also have the tools to do so if we use them wisely. Tuberculosis is not distributed equally around the world and contrary to many con assumptions, the majority of individuals affected by this disease does not live in Africa, but lives in Southeast Asia, with the largest populations in India, but also large populations in China, in the Philippines, in Indonesia and in Pakistan.
The largest population in Africa is in Nigeria, which has the largest population on the continent. Now, if we wish to eliminate tuberculosis like stated in the entity B strategy, we need to have different tools from what we have today. First, we still have a vaccine that is more than 100 years old. The vaccine is barely working in newborns, although 88% of all newborns in the world are vaccinated with Basel Calmette goreng as a Mycobacterium bovis derived vaccine, and it's the most prevalent vaccine of all vaccines.
But it only protects children until the age of five years from tuberculosis. And as shown here in a study published in the New England Journal of Medicine last year, review and adults does not protect from development of tuberculosis. There are now 17 vaccine candidates in the vaccine pipeline, and the one here highlighted in red from GlaxoSmithKline, which is now rolled out as the largest ever performed vaccine trial in human history, were funded with 550 million USD by the Bill and Melinda Gates Foundation and the Wellcome Trust.
That vaccine candidate is now going in or is now investigated in phase three clinical trials. And you see here on the right side, the results from the phase two clinical trial, which showed a 50% protection in Igra positive individuals in South Africa. So this vaccine may be a game changer, although it's not leading to elimination of tuberculosis because of 50% protection is simply not enough.
Nutrition has been identified as the key factor to tuberculosis a vulnerability. And in this, a landmark slide study published in The Lancet in 2023, which was a cluster randomized household contact study. So individuals in a in two suburbs in India who developed tuberculosis, they received food packages. But in the houses, let's say, with the even numbers. Also the family members of the household members received food packages.
But in the other group, only the TV patient received food packages. And the incidence of TB in the context from the South holds was twice as high in those that did not receive the food packages versus those who received the food packages, and the effect of prevention of tuberculosis simply by improving nutrition was better compared to the effect of the novel vaccine that is currently in evaluation.
So food is very important. And you also see in the latest W.H.O. report that now undernutrition is the number one risk factor for tuberculosis. It it has it is much more important than, for example, HIV infection today. Diabetes another metabolic disorder, is also very high on the list. And alcohol consumption and smoking. But undernutrition is the key factor to control tuberculosis and a large proportion of the children in the world approximately a quarter, still suffer from undernutrition.
In order to combat TB, we also need to improve immune diagnosis. At present, we still sometimes use the tuberculin skin tests, but much more often we use interferon gamma release essays. These are tests for tuberculosis infection, and they are usually applied to identify the future risk for development of tuberculosis in risk groups, they identify those who develop tuberculosis in the future ten times better than those who have a negative.
If they have a positive response, then those who have a negative response. However, the positive predictive value of these tests, for example, in contact studies, is still very low 2.5% in eyeglass, it's better than to vocal and skin test, but still 97.5% who have a positive exam response do not develop tuberculosis in the next years. We need better tests to identify those who progress to active TB.
We do have a very good track record in reducing the duration of therapy to prevent tuberculosis in those who have a positive or a positive skin test, and who are at risk for future development of TB. While in 1965 the recommendation was still for 12 to 18 months of isoniazid monotherapy, in 2021, months of isolated and reefer painting have been recommended to prevent TB and which is highly effective here.
There is a problem that with a painting is not available in many countries in the world like the countries of the European Union. But this shows that over time, the duration of preventive therapy is coming down. And that is a very good message. Also, we need to reduce transmission of TB. And here a new obstacle occurred in the past few years that the large amount of individuals who are actually suffering from active tuberculosis are asymptomatic.
They don't have fever, night sweats, weight loss and cough. But a quarter of those who have the detection of of Mycobacterium tuberculosis by PCR or culture from sputum. So 20% of those actually have also detectable acid fast, messily on sputum smear microscopy without having any symptoms, and these individuals are considered to be contagious. This new finding of a large proportion of asymptomatic TB has consequences for control and high burden settings.
The field that is dramatically advancing at the moment is the field of tuberculosis diagnostics, and in due to the sake of time, I just have one slide that shows here on the right side what is currently going on that is advancing these fields so substantially. We have tank swamps and buckle swamps to identify a large proportion of those by PCR from tongue and buckle swabs that previously have been identified from sputum, or use face masks in adults to elude improved closest DNA.
After wearing a face mask from these masks and to identify the DNA by PCR, there are novel. So-called lamb essays that can detect bacterial bacteria components directly from sputum, so they can be used for the diagnosis of active TB, but they can also use used for treatment monitoring s, the so-called Embla test same indication identifying active TB but also treatment monitoring.
And this is an RNA based PCR, whereas the gene expert is a DNA based PCR. And while DNA is very stable in the environment, RNA gets quickly degraded. So this novel Embla test allows to identify living bacteria and discriminate from that bacteria. There are also novel blood tests, like a Crispr Casp based DNA amplification by PCR that identifies very little amounts of mycobacterial DNA from human blood.
Also, transcriptomic signatures lead to more than 90% identification of active TB patients and can allow to individualize the duration of therapy and patients affected by tuberculosis. Novel pictures from students are now applied for the diagnosis of TB, especially in children who have difficulties to cough, with around 70% of die of sensitivity and those who have positive sputum or gastric lavage sample.
This is the all the children, especially all the small children who are not able to produce any sputum. They all have stool. And it is amazing that from this very dense ecological environment, stool with so much DNA from different bacterial species. The TB can be extracted, amplified and even drug susceptibility can be predicted by DNA sequencing from this stool derived bacterial PCR or DNA.
There are also novel urine alarm essays that can be applied that are investigated for being point of care. Tests for tuberculosis diagnosis. To improve the currently, W.H.O. recommended urine lamb tests, which is only recommended for people living with HIV. So a lot going on in the field of TB diagnosis at the moment. One of the dark clouds on the horizon is the emergence of drug resistant TB.
And here in the year 2024, W.H.O. has put Mycobacterium tuberculosis resistant to revamp in among the highest group, the so-called critical group of antimicrobial resistance pathogens that are threatening human health. All the other three organisms that are in the critical group are gram negative bacteria. And for all of them, antimicrobial stewardship is in place. We are just starting to identify antimicrobial stewardship at a very important agenda to trying to prevent the emergence of tuberculosis drug resistance in the world.
Drug resistant TB, like TB in general, is not equally distributed. Again, the largest number of individuals affected by resistant TB live in India, and there are several countries in the region like the Philippines or Indonesia, China, but now also Russia, which in Russia about approximately 50% of all individuals affected by TB have seen resistant TB. The distribution, again, is in this corridor and much more drug resistant TB than there is in Africa.
The good news is on new TB medications, that we never had so many novel components in clinical development as we have currently. If you want to take a guess how many drugs there are, there are 2020 drugs in phase one to phase three. You see them listed here in the slide borrowed from the new TB drug working group, some in phase one, some in phase two, some in phase three of clinical trial development.
And the opportunity of having all these drugs now available for clinical trials led the European Union to fund a novel platform trial within the United for TB program. The trial is called paradigm for TB and in paradigm for TB. 12 different arms of regiments are compared with the duration of 16 weeks against the gold standard of his giving for six months or 24 weeks, and the two best performing arms here in yellow, which have a gun feeble roll back bone.
That is a novel drug, and this one has a novel drug called 043. The best of these arms. And the best of these arms will proceed to the phase two C study, where a duration selection is going to be performed to see what is the shortest possible duration of therapy that still gives the highest needed effect of treatment.
I don't know whether in any other field of infectious diseases or in any other field of medicine ever. A platform trial having 12 arms in parallel has been evaluated. Probably this is now unique for tuberculosis. And you see that there are four more arms in a wave. Two of this paradigm trial that is also evaluating with the same method, different new combinations of drug treatments.
So paradigm for TB within the unit for TB family and EU funded project is setting new standards for clinical trials in tuberculosis. However, you know that we have these now shorter regiments for drug resistant TB, the so-called people M regimen, which is the most prominent of those two years after W who identified or not identified, but recommended the bomb regimen for the treatment of drug resistant TB.
Only half of the countries in the W.H.O. region, Europe shown here, had the ball M regimen available and had the tools for testing for all of the components in the bomb regimen, mainly due to shortages in Prague, susceptibility testing to predominate, and in the availability of for this regimen. This has is a one and a half year old slide, and the situation gladly has improved much.
But still, not all of the countries have the regiment available today. Something also that is the newly observed, but which was there forever is post tuberculosis Lyme disease, meaning that patients get cured from the infectious disease, but large structural deficits may remain. We're currently estimating that there are 150 million individuals living on Earth that have survived tuberculosis, and 50% of them, around 75 million individuals, have a limitation in the lung function being restrictive or obstructive.
Lung disease and post tuberculosis. Lung disease is now defined by respiratory symptoms with radiological abnormalities and lung function abnormalities, but beyond that it has systemic effects with increased cardiovascular mortality, and at present, we do not have any host directed therapies that can prevent this post. Tuberculosis lung disease to occur. Another very important issue that is linked to tuberculosis is migration.
One of the great challenges of our time. We now see that around one third of all the patients with tuberculosis in the European Union are individuals not born within the European Union countries. However, this is only because there are countries like Romania which have the largest burden of TB in the EU, where most of the patients are actually Romanians.
If we look at individual countries, we see that here in Norway, 93% in Malta, 93%, Cyprus 90%, and so on, that those are the percentages of individuals that are foreign born who have who are developing tuberculosis. So at the time of tuberculosis elimination in these low burden countries. This is a disease of those who have migrated towards these countries, and not so much of those individuals who were born.
And that has certain implications. The risk of tuberculosis in migrants for having TB, TV5 co-infection is higher than in those born in the countries. So is the risk for multi-drug resistant tuberculosis and for extra pulmonary tuberculosis. And based on these variables, there's also a higher risk for unfavorable outcome. And last but not least, it's about peace and prosperity.
We all know that the world in Europe has changed after the invasion of the Russian army onto the territory of Ukraine. Ukraine spend a lot of efforts to decrease the tuberculosis incidence from 2010, when it was a high burden country, to 2020, when it was a low burden country. These are images that we saw over our television and news on the first days after the invasion of the Russian army and the bombing of Kyiv, people trying to find shelter in the metro.
And this is exactly the situation that Microbacterium tuberculosis needs to be transmitted from one person to the other, a badly ventilated space. A lot of people are confined to the same room and breathing the same air. Within two years, the incidence of tuberculosis in the Ukraine increased again to 112 per 100,000, making it a high burden country of tuberculosis again.
And in addition, due to a large number of Ukrainians who left the country and Ukraine having 30% of individuals with MDR-TB, the number of individuals in the European Union affected by drug resistant tuberculosis has increased to almost 500%, from previously 500 individuals to previously 300 individuals. And you see here in red, the rate of Ukrainian TB notification increased from 10% to 50% of all patients with MDR-TB in the European Union.
Small numbers, little large effect.
We can not eliminate tuberculosis at the moment because the main factors that driving tuberculosis are social determinants. There's a brilliant study done by unchristian Norman colleagues from Denmark showing the incidence, not mortality rates, what everybody else has but the incidence of tuberculosis in Denmark. You see that at the time when Robert Koch identified Mycobacterium tuberculosis as the cause of this disease in 1882, the incident was around 600 per 100,000.
And when the first medicines were becoming available, the incidence was already around 50 per 100,000. Without any drugs, it just social circumstances. That changed yesterday. The European Centers of Disease Control and Prevention and the W.H.O. Region Europe office have published the new surveillance data. They are for the year 2024 but issued in 2026. And you see the decrease of tuberculosis incidents in the European Union and European Economic Area is almost a straight line.
Here was a case detection deficit that was during Covid that has been controlled for and the straight line is now continuing. And if we take the pleasure to move it forward into the future, we will see that the elimination of tuberculosis would be possible within the next ten years in the European Union. However, with changes like we see in the Near East, in the Ukraine, this will be hardly possible.
In conclusion, we are nowhere near to elimination of tuberculosis. In contrast, where the peak of the of the TB epidemic with 10.7 million estimated cases as seen or has shown, research and development is not the problem. We have the highest number of vaccines for TB prevention in the so-called vaccine pipeline. We have a large number of diagnostic tests that are close to the clinic, and we have 20 new TB medicines in clinical evaluation.
Phase one to phase three implementation is the problem to get the horse powers on the ground. But we can, with all these new tests and all these new drugs that come when we focus more on implementation. However, as a social disease, without peace and prosperity, we all know that there will be no elimination of tuberculosis. And with this, I thank you very much for your attention.
Thank you very much, professor, for this comprehensive overview of recent developments in the field of tuberculosis. Appreciated. And now it's my pleasure to introduce Miss Oksana. Oksana is a survivor of a drug resistant TB, and she leads the Moldova National Association of Tuberculosis Patients. Smith, which provides support and peer education while advocating for the rights of those affected by the disease.
And Oksana, is dedicated to ending stigma and ensuring community engagement in TB research and development. She is an active member of several national TB organizations and internationally. Her work extends to the TB Global Community Advisory Board, the Global Coalition of TB activists, TB people, and the Or Regional Committee. With years of experience as a consultant for Or Europe and the TB Europe Coalition, Oksana remains a leading voice in fostering constructive partnerships and ensuring patient led perspectives to drive the global TB response.
Oksana, please, the floor is yours. Thank you so much, Nina. Before starting, just to say a great thank you to Professor Langer for concluding his beautiful speech, highlighting that it is important beyond all this research and innovations, think about the social aspects and social determinants of the disease, which will actually make to be elimination and possible unless we come and approach with TB responses at county level in a comprehensive manner, which is absolutely essential and critical to see that we all the progresses, where do in a research world are acceptable and are accessible, and where people need this the most.
And we've seen that the the port of all the search for to follow the extremely large with a lot of potential and we as civil society need to do a lot to to see that all these things are closer to, to patients who I needed to who I need this the most. I would like to speak about before starting speaking.
I would like to bring my personal experience, because I do understand that bringing the human voice and human faces to figures numbers that sticks is absolutely critical and important. And therefore, I would like to start with my personal story, speaking about my own very shortly, about my own history of with TB, with my life of the TV, which lasted for three years and which started with being diagnosed with MDR-TB.
But due to the to the fact that at the time I've been diagnosed, my country, Republic of Moldova, was facing the hardest times in treating TB. There was no drugs for drug resistant TB and for one whole year for 12 months I was swelling the pills for drugs acceptable to be. Unfortunately now with no effect, and only only after one year when drugs became available through the donation of the Global Fund, I started the treatment and completed the treatment after 1212 months, very successfully.
Even even I say it very shortly and very positive. Experience as a patient was very hard due to the injectable, due to the side effects, which were very hard to hard to imagine and had to deal with during the treatments. With pills of 20 pills a day to be swallowed in one one time, and to be understood to be very well aware of the fact that if you do not do that, if you are not following the requirements, you are not following the prescriptions, you have all the chances not to that cure to get cured.
The other story, which I want to share, is the story of my of a man, which lately became my husband, and we met with him in in the hospital where I was treated for drug resistant TB, and his story was much more difficult, I would say. And you can see in a few lines, a whole life of ten years of fight in fighting TB, in being diagnosed with resistant to drug to second line drugs, with no access to to these drugs for for a couple of years when starting the treatment with the second line drugs and developing resistance to to the second line drugs and becoming easier and trying to contact to contact people and
researchers at at international level to bring new regimens, to try to construct new drugs and to make them available. So the history ends with the construction of an individualized treatment regiment in and the treatment completed successfully after 24 months. During all these fights and looking for the for the.
For life, I would say we as patients have have managed to fund a society organization and enjoy. I'm very sorry for the noise. I cannot control it. We find it an NGO which and since that moment our life as a advocates started and we transform our personal experience, our personal life into an activist story where we tried to to ensure that people who are facing the same challenges are not facing the challenges in the extent that we faced on. There was now now medicines in the at that moment.
Speaking about the overall context of the work, how we do, it's important to understand that we need to fortify the community engagement through their empowering them and bringing important key elements. We are speaking about supportive legal and policy frameworks, coordination and collaboration, sustainable financing, and all of these facts are needed to ensure that communities and the health systems are complementary, one to each other, and contribute equally to holistic, equitable and people centered response to to virtual losses.
However, there is another key important element which is not yet so scaled up or spoken about. We need to measure the impact of the communities, because when we are coming to speak about the civil society and the country level, the state always like the state structure, always asks how can we? We can measure because what we want to see concrete examples, we want to see concrete indicators.
And therefore W.H.O. house introduced for specific indicators to being able to measure the impact of civil society when working in a community, community level. Another thing I would like to speak is about thinking that community engagement is a concept very large and depending on where you are speaking and what which part of the world you are speaking about community engagement, the things may be very different.
For example, in the ecoregion, when we are speaking about community engagement with mostly refer to service delivery, it's about implementation, complementing work. While we are speaking, for example, in the US, and we are speaking about the community engagement in the in in Africa, we will mostly refer to community engagement in research because the huge part of the research is doing on that part of the world.
And speaking about the the Africa. So it is important to understand that there is a difference. I always say it's necessary to speak on. We are referring to community engagement, to say what kind of community engagement we are speaking. Do we refer to research or do we refer to service delivery? All of this is all of this is complementary on some aspects.
However, the purpose and the and the focus are different because in the community, in research we focus on knowledge and evidence. While in service delivery, we focus on implementing the results of the of the evidences into the program implementation.
One personal view and meaningful community engagement is actually the thing that the active engagement is not only a process, because the definition, for example, given by the W.H.O., is that the community engagement is a process of engaging part of engaging community partners and patients as partners in equal manner in the processes. While my my personal perspective would be that the meaningful, meaningful community engagement is both a process and an outcome because it means that we need to empower people we want to engage, engage with.
We need to invest in competencies and skill to have its meaningful engagement, not not just to to tick a box in a in a document, but we have engaged to the communities and we need to ensure that we have all these platforms. That means that we have active participations, participate in speaking about the research and the stage. It is necessary to understand that the engagement should start from the very beginning, and I say it should start from the conceptual to the research question and designing the protocol.
Again. Another things I've been reflecting. How can we think about patient journey, patient experiences and patient centered research, which is what is the difference actually about all these things around. And while Patient Journal reflects and speaks about the interaction of a patient within a healthcare system, the experience of a patient's within the treatment processes is mostly about the patient satisfaction and then the standing of the quality.
And here is the face of of a treatment that we need to understand. But it's not only about the clinical outcomes and clinical and powers and and points. It's about how the patient perceives the treatment and whether his expectation actually meet the these tools and this drugs that are given to him within the treatment processes, patient centered. The search is even a normal part of this experience because it refers to the to the global engaging in, in, in research.
And we need to ensure that while engaging, we are doing all of that and we are building the research which is relevant, trustworthy and effective in producing improvements in patient care and outcomes. For too often the results of in a study regarding even the treatment success is so different from what is getting on the ground. And it's so and it's so unfair because we do want to have the same the same results.
A complex to win a trial at the country level.
This is where the globe how I try to incorporate again with all these cycles, putting on each one, each another, saying that we need to consider patient centered research, a small bullet within the patient experience, which is well determined by socioeconomic and cultural and environmental conditions. And therefore I always I am so thankful to Professor Lang saying that we will, we will not.
We are not likely to to reach TB elimination with without understanding how social economic determinants and culture, religion and and the whole environment influences their research, their treatment, successes of access to, to process treatments for the patient. Another point but and this is my actually my own statement thinking, and we need to think that we when we are designing the research, we need to understand how we squeeze this time, narrowing the time for the research, taking into consideration that some of the patients are actually in a very limited time.
And even if we prognosis.
Research, we understand that time for research and translational research into practice is not comparable to sometimes to specific people to clear to to individuals who might be facing limited options for treatment and being in a very hard situation.
Very, very shortly. I'm being aware of the time. I would like to speak about how it actually happens. There are different variables in the last time. There are various moments and various models of community engagement at global, regional and local level. One of the most most famous would be the Global Community Advisory Board, which is an which is a network of people working at the global level engaging with research and sponsors.
And it is not affiliated or tied to any specific institution. At the same time, we have a regional, the European Organization, for example, for Diseases Community Advisory Board, providing an opportunity for sponsors to to get valuable input. But it is typically organized by the sponsors at national level. You have a good example of the Brazilian TB Community Advisory Board, who is playing a complementary role in seeking to promote culture, and it is not connected to any to any site.
At the same time, we do have research network such as the Community Research Advisory Group, which which focuses specifically on some researchers conducted by by a country and then engaging in monitoring and see how it works within different consortium. We have smartphone, TB and so on. We have site level, site level cups, for example, within the stream and Xenix cups.
There was there was built site specific community advisory advisory boards with a specific community engagement plan working at the site level at a particular time for the for the TB community, for the TB global care. Me being a part of it almost. I think for 50 years. It's it's very important how and I really acknowledge the work of all those people who engaged in communicating and trying to bring knowledge and trying to bring people perspective and building a very solid agenda to inform research agenda to advance, to be vaccinated, to improve knowledge, to promote pre-approval and post-trial access problems, to advocate for regulatory authorities, to rapidly review and uphold rigorous evidence to ensure a valuable
pricing. So all of these activities, all these things which are put on the agenda, try to address the continuum of care within two workflows. Specific wins achieved by the TB Global Community Board is driven by the fact that not all of us research developers sponsors are getting interacted closely with community, with communities. So a lot of community position papers, statements, open letters of being developed by typically members in response to the agenda driven with limited input from the affected communities.
We use as a typical to host regular and specific meetings on TB research and product sponsors to conduct clinical trials. Protocol reviews to any sponsor, which is that is seeking our feedback. We are always doing that. We facilitate results dissemination again when it is asked for us, and we can actively engage in this work engaged with authorities, regulatory authorities.
So in the age of W.H.O. organizations, to ensure that W.H.O. translate the results of a successful studies into concrete WTO recommendation, which will be later, which can be later uptake by by countries at country level and so on.
Speaking about my my own country because this is what I want. First of all. And before that I said I would not be a good advocate if I will not change the situation in my own country. And I always fight for things which are developed to be here, present in the country. The engagement in research started with Stream stage two and then we generated evidences regarding the efficacy, safety, cost, efficiency.
Then on Xenix we have a of of with those of the duration of it. All these things led to the introduction of of the new treatment recommendation based recommended by by W.H.O., based on the results of these two to clinical trials into the country. Into the country protocols, national guidelines which we are having in the country so adults and for and for children.
It's important to mention that Moldova is among the first countries in the Eastern Europe and Central Asia to start implementation of short treatment regimens of new medicines for drug resistant TB. And today, in the morning, we had a forum and our co-ordinator said that it's the first time on after introducing the new treatment regimens for drug resistant TB, we have reached almost 80% of success rate for drug resistant TB and almost 90% treatment success for drug susceptible to be.
And this incredible results. Let's just keep hope that things will improve and we will do our best to reach the the 100%. A lot of things have changed after the participation in, in, in the country or improving participation of communities and civil society in TB response. A lot of legal and policy frameworks have been reviewed. We have an absolutely incredible social protection mechanism for people receiving treatment who are one benefit from social packages during the whole period of treatment to ensure that we are addressing the social, the social determinants and the economy and vulnerabilities of people and treatment during via via their treatment, we ensure that we are not saying the patient just swallow your
pills. We instead of saying this, we are encouraging. If you will do that, you'll follow your your regiments. You'll be supported from the National Company of Medical Insurance, will give you monthly, monthly support, and you can go and benefit and to buy nutritional to empower nutritional scheme funding. Again trying to ensure that after the transition from the Global Fund and we are now as country entering the last transition cycle from the Global Fund, we need to ensure that all the drugs are procured from the national domestic through the national domestic mechanism and from the national, national national resources.
Again, another thing spoken about how measure actually the impact of civil society and community in in research, we we said that it is necessary to introduce a specific indicator, for example, for community participation in the research. And we did that. We consider that having this percentage of percentage of clinical and operational research studies conducted with, with the direct involvement of civil society would be absolutely, absolutely important.
Another another point is you may see a lot of points which need to be addressed. If you are speaking about continuous advocacy, we should not start. We should not end where we are now. And like key takeaways, definitely, we need to acknowledge that community engagement is about ethics and social value. It is a vital component of the fight to NTD, and we need to understand that community engagement and research is only one piece in a large puzzle.
Defining the patient experience. Community engagement help identify research gaps, and we still face a lot of lot of a lot of challenges when we are speaking that a lot of population are still not included because of a different eligibility criteria in the research, and driving the implementation to have different results within at a programmatic level than those at the clinic.
At the research level, we need to speak that we need to. We need to focus about the partnership and to empower partnerships between communities and researchers to inform product development, to help ensure that we need technologies serving the priorities of people affected by the disease. And of course, it is necessary to understand that we need as community to have ownership over research, as well as to be equipped to advocate for key research before governments and other within the countries.
Because, because without having the community from the very beginning, it is most likely that the implementation of any research and innovation will take more time than it is when it might take. If you do it from the very beginning and the community is there, understanding the role we need and gives legitimacy to any clinical clinical study. Thank you.
That is from my side.
Asana for reminding us that clinical research and innovations are only as strong as the people like you and the communities that power them. And I want to thank Professor Lang for showing us the scientific research and development with new diagnostics and novel drugs that make progress possible. You both have shown us that while the challenge is great and even greater today in our current climate, the tool for TB eliminations are within our reach.
So as we move to our Q&A segment, I want to encourage everyone to look in their screen and post your questions. We'd love to get to the questions, but before I do so, I want to ground us on the vision for war. TB day 2026 fighting against TB together. What you see here are key messages. Some of the key messages from W.H.O. that have resonated throughout the presentation from Professor Lang and Oksana.
They're not just Logans. They represent essential clinical and public health objectives for addressing an epidemic that, as we've seen from Professor Lunga, Slide, is still at its peak. So one ending TB stigma. We must lead by ending TB stigma. As we heard from Asthana, remains a barrier and it prevents people from accessing the quality care they need and deserve our latest and greatest diagnostic tools or new drugs course lose their value.
If a patient is too ashamed to walk through the clinic door, or afraid that testing positive will cost them their livelihood. Second, we need to spread the fact that tuberculosis is curable. We need to be loud and clear about this. Our collective role is to ensure patients, people everywhere know their risks and symptoms, get tested early, and have the support, the support they need to complete their treatment plan.
Another key component prevention, is the new frontier in our strategy. We know that the progression from infection to active disease can be stopped. However, with nearly a quarter of the world potentially being infected and much of that doctor Professor Lang has alluded to, in India, we cannot remain passive. Our focus must be on identifying those at the highest clinical risk, specifically, individual with immuno compromised immune system, such as people living with HIV or those preparing for transplantations.
We also must prioritize those with the highest likelihood of exposures, including household contacts of confirmed cases and recent migraines migraines from high burden regions. You know, Doctor Lang have also discussed that with regard to, you know, the influx in countries like Norway. By testing these groups accurately and ensuring they complete preventative treatment, we can interrupt the cycle of transmissions before it begins.
And then finally, I want to remind us of innovation in practice, the shift to shorter all oral regiments for drug resistant TB is a victory for patient dignity. You know, going back to asana, six months appeals with no injection. It's more than a clinical outcome. It's a human one that drives drug adherence abilities and save lives. And on that note of hope from our speakers and for myself, let's open the floor for your questions.
Again. Please use the Q&A buttons and then I will start. Let's see. I'm going to start with Professor Lang. So since you you spoke first and you know you got a chance to have your, your cup of tea, I want to ask you this. Your data shows that drug resistant is now a reality for 1 in 4 new patient in Europe, with the crisis in Ukraine and elsewhere that we've seen forcing many people into migrations, how do we practically stop the spread of resistant TB when the usual health care systems are disrupted?
This is really a very difficult question, because if you imagine you are now in let's take the example of Kyiv again, there is the drones coming and the bombs coming, and everybody is going into shelter. And there are you don't know whether your neighbor is sitting with you in the shelter suffering from TB on. He or she may not know that herself.
And to go into the shelter may have or has priority towards infection control. These are there are many different situations, like in this example of Ukraine today, that just increase the likelihood of transmission. And it's very difficult to combat that. All the best is to have a set piece and prosperity. We see this in so many examples that even without medicines, the incidence of tuberculosis goes wrong, decreases dramatically under the right circumstances.
So just when there is more wealth, that's that's what it boils down to. Nevertheless, we need research and development to make to accelerate that process. But unless we stop having these, the the wars and the situations that cause.
Transmission, that that increase, like synthetically speaking, that increased transmission events, unless we we solve that, there will always be transmission. Okay. And I see we have a few more questions. And just with to honor our time as well, I'll have this last question I'll ask Asthana and then we can wrap it up. So, Asthana, I'm struck by your point on how the patient experience is frequently side lined in favor of clinical data in a field driven by results.
How do we practically pause to prioritize the patient behind the diagnosis, rather than just the disease itself?
Thank you. Thank you. Absolutely. You started with the right question because we need to we do not need to prioritize disease before the patient because patient is handling the disease. So he should be in the center. And if preferences of the patient do not coincide there, then we are facing the risk that we have a collision collision of of texts which are actually impossible to control.
We need to see what is the situation around the patient, what are the expectation, and then try to construct the regiment's treatment regimens, those which are more likely to be respected are more likely to be adhered to. So on to to to construct the speaking about person centered care, to ensure that we are not just focusing on outcomes which are important for the clinicians, but we are mostly mostly focusing on things which are important to patients.
And this has been as well highlighted. But by Doctor Langer, we need to find a balance between between a huge number of factors which are influencing adherence and therefore this approach, trying to incorporate things which seem to be difficult to incorporate, but this is the mission of a professional, is to make people to make things marry each other.
Clinical outcomes or people of personal expectation preferences, places where to and to see, to look at things largely. Not only very not not, not largely. And in a way to see that we have all the best ways of the patient. Thank you. Well, in the I looked at our time so that for now will conclude our session for today.
And before we go, Nina and I want to sincerely thank our speakers, Professor Lunga and Asana for their invaluable insights, for their passion that drives their service to people. And I want to thank you, the audience, for your engagement, whether it's through research and development, frontline advocacies, case management or direct clinical care. Your work is what drive this community for our collective.
Northstar remains the same to save lives and ensure that no one is left behind. And you know, for my colleagues who are attending Ethnic Global next month, our global medical care team will be there in person. If you're interested in continuing this conversation around TB diagnostics and the practical translation of research into care. We look forward to meeting you there.
So until then, be well, my friend.
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Contributors
Oxana Rucsineanu
Oxana Rucșineanu holds a Master in Public Health. As a survivor of drug-resistant TB, she leads the Moldova National Association of Tuberculosis Patients “SMIT” (Society of Moldova against Tuberculosis), providing psychosocial support and peer education while advocating for the rights of those affected by the disease.
Oxana is dedicated to ending stigma and ensuring community engagement in TB research and development. Nationally, she is an active member of the TB NGOs and Key Affected Populations Platforms, the Country Coordinating Mechanism, and the National Committee of Experts. Internationally, her work extends to the TB Global Community Advisory Board, the Global Coalition of TB Activists, TB People, and the WHO Regional Committee (RCC-THV).
With years of experience as a consultant for WHO/Europe and the TB Europe Coalition, Oxana remains a leading voice in fostering constructive partnerships and ensuring patient-led perspectives drive the global TB response.
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