UK Academics and Professionals to End TB (UKAPTB) are a grassroots network of healthcare professionals and researchers interested in working together to push for changes in policy and funding that will bolster efforts to eliminate TB.

We held our first in-person meeting on Friday 26^th January 2024 hosted by the Centre for Tuberculosis Research at the Liverpool School of Tropical Medicine bringing together people working in a variety of contexts with representation from NHS England, the UK Health Security Agency (UKHSA), local public health, affected communities, civil society, parliamentarians, university-based researchers,  health workers and funders.

The meeting was held at Spaces at The Spine, a building with a distinctive façade a symbolic reference to nature, located in Liverpool’s Knowledge Quarter just a short walk from the national train station. We were blessed with a crisp bright morning providing phenomenal views over the city from the 13^th floor – a wonderful space to catch up with old friends and meet new faces.

The day was split into three main points of discussion: strengthening partnerships to accelerate the UK’s efforts to end TB; how to get back on track towards eliminating TB in the UK and; how do we ensure TB is on the antimicrobial resistance agenda in the United Nations High-Level Meeting this year. The day was designed to facilitate discussion through short presentations, panel discussions which later opened for audience interventions and plenty of time and space for conversations to continue over coffee and Scouse stew.

“despite the UK being a leader in TB research, we do not implement in the UK all the innovations we have contributed evidence for“

Some of the key messages that came out of the day were about building strong, equitable partnerships – be that in UK research collaborations with the Global South and explicit practices of decentring colonial power which came out in the session showcasing TB research around the UK, or partnerships with affected communities, policy makers, civil society, academics and healthcare workers. However, it was noted that despite the UK being a leader in TB research, we do not implement in the UK all the innovations we have contributed evidence for: Video Observed Therapy is not accessible across the country, rifapentine-isoniazid fixed dose combination is not routinely accessible and people with multi-drug resistant TB struggle to access the latest shorter all-oral regimens due to difficulties procuring key medicines.

Other challenges experienced by healthcare workers in the UK included structural conditions that both challenged people with TB and the services designed to care for them. Most people diagnosed with TB in the UK were originally born in high burden TB countries. The government’s hostile environment policy agenda makes TB prevention, care and surveillance incredibly difficult for some of the people most at-risk of TB. In addition, the cost-of-living crisis negatively impacts the social determinants of TB including access to good quality housing, nutrition and employment. TB teams must address these complex issues if they are to successfully support people through diagnosis and treatment completion. This takes huge resource which is frequently not provided by budget holders as they grapple different priorities and an NHS in crisis.

“We need to embed TB prevention and care into other relevant agendas”

As countries move towards TB elimination, the need to move away from single disease policies and vertical funding will become ever more pressing. Health system strengthening is therefore key to building resilience into end TB strategies. In the UK one example of ensuring access to specialist advice for complex patients in a low incidence setting was to set up through a virtual multidisciplinary team meeting with an experienced clinician. Getting TB on the agenda has long been an issue in terms of funding. Academics and healthcare professionals have a credible and powerful voice but banging the TB drum and publication of peer reviewed journal articles are often not the best way to make ourselves heard. We need to embed TB prevention and care into other relevant agendas including for example, universal health coverage, pandemic prevention, preparedness and response, anti-microbial resistance, the climate emergency. Finally, we must be less squeamish at engaging politicians and policymakers to do this.

“there was a buzz of energy that lasted throughout the day”

There are no short-cuts for this kind of advocacy work – relationships take hard graft and personal connections and must be an exchange of information and not a one-way street. Policymakers need to be able to reach out to the right people and be given information in ways that are understandable, relevant and timely and we need to support that. Building partnerships, strengthening our networks and producing fruitful collaborations to end TB was the aim of the day. There are multiple groups working on TB who are UK-based – whether their work is targeted across the four nations or globally – each with their own agendas and skill set. The aim of this event was to join things up; showcase and share the variety of work streams in action; connecting disciplines and geographies to generate new ways of seeing and doing. Despite the early start for many, and a vast amount of information-sharing, there was a buzz of energy that lasted throughout the day and into our journeys home. We need to keep building this momentum through the upcoming World TB Day and beyond – only together will we succeed in creating a TB-free world.

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UKAPTB: https://www.ukaptb.org
UKAPTB news: https://www.ukaptb.org/news-and-events
Contact UKAPTB: ukaptb@gmail.com

Jess is lead of the TB service at North Middlesex University Hospital in London. She is co-chair of the UKAPTB and advocacy lead for the European network TBnet. Jess is a qualitative researcher interested in access to health care and the structural conditions that shape these experiences. jessica.potter3@nhs.net

Images courtesy of KC (view of Liverpool) and Alejandra Cardona-Mayorga, Liverpool School of Tropical Medicine (UKAPTB meeting session)

Marc Lipman and Ibrahim Abubakar attended the recent UNHLM in New York – the second to have a session focused on TB. Here Marc reflects on the meeting.

The UN High Level Meeting (UNHLM) on TB took place during the 78^th Session of the United Nations General Assembly in New York on Friday 22 September 2023. Earlier in the week there had been UNHLMs on Pandemic Prevention, Preparedness and Response (PPPR) and Universal Health Coverage (UHC). Given both the global importance of TB and the devastating impact that the COVID pandemic has had on TB services, the potential existed for the last UNHLM of the week to be the most fruitful.

Looking back this might indeed be the case as, unlike PPPR and UHC, the political declaration adopted following the TB UNHLM contained targets against which global and national progress could be measured, and the TB community came across as intelligent, unified and committed. However, what a country says it will do to eliminate TB and the actions that then follow can be quite different. Indeed there was a fair amount of wiggle room in the declaration as targets were often couched in language that made them aspirational rather than binding. It was noticeable, also, that by the end of the week many if not all national leaders had packed up and gone home, leaving their Health ministers to usher in the political declaration.

The importance of science and research were emphasised. This aligned with the commitment to significantly increased funding. The concern for me is complacency

So what was good? Certainly, the importance of science and research were emphasised. This aligned with the commitment to significantly increased funding directed towards the topical area of vaccines, and the creation of the TB Vaccine Accelerator Council – which, with WHO support, will focus stakeholders such as governments, communities, global agencies and funders on key issues relating to vaccine development, evaluation and implementation. Also, there was a recognition of the societal impact of TB, with emphasis placed on the importance of equity and access for all, and the catastrophic economic consequences of TB.

The concern for me is complacency: as one speaker said during the UNHLM TB session – “In 2023 why do we let 4000 people die each day from a condition that can be easily cured?”. The answer may be that people are so used to the massive amounts of associated chronic disease and death, that despite the considerable personal stigma of TB, it is almost accepted as an inevitable consequence of life in many parts of the world.

The next UNHLM on TB was announced as taking place in 2028. This itself is a success as it was not a given. How we drive and support the agenda going forward is important, and UCL-TB – both through its research, training and education (including its role as a WHO Collaborating Centre for TB Research and Innovation) and also as part of the network of Academics and Professionals to End TB (UKAPTB) – has an important role to ensure that in five years’ time we can feel a sense of achievement rather than gloom about what followed the 2023 UNHLM on TB.

One of the pleasures of working in UCL is the opportunity to host visitors from around the world.  One of our guests to the UCL Centre for Clinical Microbiology at Royal Free has been Dr Pacome Achimi Abdul, who heads the CERMEL (Centre de Recherches Médicales de Lambaréné) TB laboratory based in Lambaréné, Gabon.  In this blog, he talks about the work of his laboratory.

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I am Pacome, from Gabon, a country in Central Africa region with a population of 2,000,000 inhabitants. I joined CERMEL in 2016 as a research assistant, becoming a postdoctoral scientist and then Laboratory Manager in 2019. I’m working on infectious diseases, and in particular on tuberculosis (TB).  My work is mainly the implementation of new technologies to diagnose and to follow TB patients. Other roles include being in charge of the expansion of the Gabonese TB-lab network, and supervising students for their MSc projects. Since 2020 I’ve been an Africa Research Excellence Fund (AREF) fellow, hosted by UCL, and my project title is “Developing a tuberculosis sequencing pipeline for Gabon”.

General background of tuberculosis in Gabon

In this blog post, I will explore the background of TB in Gabon, the challenges faced in combatting the disease, and the important work of the CERMEL TB laboratory in diagnosing and treating patients.

TB is an infectious disease caused by the bacterium Mycobacterium tuberculosis. The disease mainly affects the lungs but can also affect other parts of the body.  TB is spread through the air when a person with active TB disease coughs, speaks, or sneezes. Common symptoms of TB include coughing that lasts for more than two weeks, chest pain, fever, chills, night sweats, and unexplained weight loss. TB can be a deadly disease, especially in people with weakened immune systems.

TB has been a major public health challenge in Gabon for many years. The incidence and mortality rates of TB are among the highest in Africa, with an incidence rate of 513 cases per 100,000 people in 2021. The number of deaths due to TB was 2200 people in the same year.

It is also worth noting that, like other countries with a high TB burden, such as many in sub-Saharan Africa, the COVID-19 pandemic has had a negative impact on TB prevention and control efforts in Gabon, leading to a decrease in TB diagnosis and treatment, and potentially contributing to an increase in the number of missed cases (individuals who have TB but are not diagnosed or treated) and the spread of multidrug-resistant (MDR) TB (see Fig.3)

Challenges of combatting tuberculosis in Gabon

The challenges of combatting TB in Gabon are significant. Poverty, lack of access to healthcare, and inadequate TB control programs are major contributors to the spread of the disease. In addition, the high prevalence of HIV (3% in Gabon in 2021), which weakens the immune system and makes people more susceptible to TB, is also a major factor.

To address these challenges, the Gabonese government and The Global Fund have implemented several initiatives, including increasing funding for TB control programs, and improving access to TB diagnosis and treatment. However, there is still much work to be done to reduce the incidence and mortality rates of TB in Gabon

Role of the CERMEL TB laboratory in Gabon

The CERMEL TB laboratory in Gabon plays a critical role in diagnosing and treating patients with TB. The laboratory is responsible for conducting tests to identify TB, as well as monitoring the prevalence of the disease in the population.  It was appointed as a National Reference TB laboratory in 2015, which means that it is recognized as a centre of excellence for TB diagnosis and treatment in Gabon. This appointment has helped to improve the quality and reliability of TB testing in the country.

In addition to its diagnostic and treatment work, the CERMEL TB laboratory also runs community outreach programs to raise awareness about TB and educate people about how to prevent the spread of the disease. These programs are an important part of the laboratory’s efforts to address the challenges of TB in Gabon. Using the National TB Program and The Global Fund support the Lab is in charge of the training of the technicians of the TB network in Gabon.

A big change has been the replacement of smear microscopy as the main way of diagnosing TB, with GeneXpert machines.  These use cartridges that amplify and detect bacterial DNA in 90 minutes. More importantly they detect most rifampicin resistance at the same time, which is much faster than traditional testing, and these cases are treated as being multi-drug-resistant (MDR) both because rifampicin is the most important drug used, and also because experience shows that if they are Rif-R, they are likely to have other resistances as well.  Over the last three years, we have expanded GeneXpert implementation in the country, so that all regions of country are able to diagnose drug-sensitive and rifampicin-resistant TB using this equipment, although there are still some laboratories still using microscopy.  Additionally, we still use microscopy for testing cultures and for evaluating follow-up patients.  This has been a real game-changer for us – we have increased our detection rate, and before this, we had no capacity in Gabon to test for drug-resistance; instead we had to ship samples to Europe to get them tested, and the time from seeing the patient to getting results was very long.  In reality therefore, treatment of MDR-TB was empirical – patients were treated as if their TB was antibiotic-sensitive, and drugs changed if there was no improvement.

Despite its successes, the CERMEL TB laboratory faces many challenges in its work. One of the biggest challenges is the growing problem of MDR-TB in Gabon, as we really need to know what other drugs the bacteria are sensitive or resistant to, in order to treat them effectively, and to prevent further drug-resistance developing. The CERMEL TB laboratory is working to develop new approaches to address this challenge and provide the best possible care for patients with MDR-TB. One of the new approaches is to implement whole genome sequencing approaches that allow all resistances to be detected, using the Oxford Nanopore MinION platform (see also the recent blog by Linzy Elton), which I am helping establishment in collaboration with the team of the UCL Centre for Clinical Microbiology based at the Royal Free.

Conclusion

In conclusion, TB is a significant problem in Gabon, but efforts are being made to combat the disease. The challenges of poverty and lack of access to healthcare are significant barriers, but raising awareness and increasing funding for TB treatment and prevention can make a significant impact. The CERMEL TB laboratory plays a critical role in diagnosing and treating TB patients in Gabon, and their community outreach programs are essential for promoting early diagnosis and treatment. It is crucial to continue supporting and funding the work of the CERMEL TB laboratory and other healthcare facilities in Gabon to reduce the incidence and mortality rates of TB in the country.

My name is Linzy and for the last four and a half years I’ve been working as a postdoc researcher at the Centre for Clinical Microbiology at UCL in London. My job is pretty varied and I work on lots of different projects, including antimicrobial resistance, clinical microbiology, tuberculosis and sequencing methodology.

I’m also part of some large African-led research consortia, including PANDORA-ID-NET, which aims to provide a scientific response to emerging infectious diseases and the Central African Network for Tuberculosis, HIV/AIDs and Malaria. This means that I am also involved in a lot of training and capacity development projects, including providing DNA sequencing training for our African collaborators. DNA sequencing of pathogens such as Mycobacterium tuberculosis is an increasingly way that drug resistance is detected, and how outbreaks can be tracked.

I’ve just got back from running a TB DNA sequencing workshop with our collaborators HerpeZ in Lusaka, the capital of Zambia, and have been reflecting on the joys and difficulties of organizing these events.

It’s not the first workshop I’ve run, it’s not even the first workshop I’ve run on TB sequencing. This wasn’t my first rodeo. Yet it doesn’t seem to matter how many times you’ve done something, nothing can ever quite prepare you for setting up in a new lab for the first time, especially if that lab is in a different country.

This event was based on the use of a small device called a Nanopore MinION and the accompanying flow cell, into which you load your DNA, and which contains tiny pores through which the DNA molecules wriggle.  As they do that, small electrical changes occur related to the DNA sequence, and these are recorded and later decoded. The point is that the barrier for set up and infrastructure needed for this technology is low, so these can in principle allow DNA sequencing in parts of the world that would find it less easy to run some of the more high maintenance alternatives.

However, while I could take the MinION on the plane, delays at customs for our reagents meant we had to move the workshop back by four months. We also blew up the electrophoresis gel tank. Twice. The NanoDrop DNA quantifier we borrowed simply refused to comply with the software on our lab’s new sequencing computer. Pipette tips didn’t always fit the array of pipette brands that we had collected so that multiple groups could work at once. It was so forcefully air-conditioned in the lab, that the two MinIONs I had brought with me were unable to get to the necessary temperature without cocooning them in someone’s armpit (often the hottest countries seem to have the coldest labs). It took hours to discover that the internet, which John Tembo, Scientific Officer at HerpeZ, had bought at great expense (requested as a result of previous experience, more on which later) had firewalled three essential – and entirely benign – files in the data analysis software the participants needed to download. And Zoom failed to sensibly record most of the presentations, meaning I’ve spent hours trying to edit them for the Global Health Network website.

Despite (or perhaps because of) these issues and those I have encountered before, the workshop was an overwhelming success. Each of the participants was able to quantify their DNA samples using the well-behaved Qubit machine (always worth having multiple options) and learned how to load practice flow cells (by the end of the day they were sick of me waffling on about air bubbles). Everyone was able to participate in the preparation of sequencing libraries (which are DNA samples that have been treated to make them flow through the pores), and each of our three sequencing runs worked beautifully.

Even the day of bioinformatics (where the data outputs from the MinIONs are decoded and the DNA sequences analysed using computers), often a difficult one for traditionally lab-based scientists to get to grips with, went surprisingly smoothly. Having run a similar workshop at NIMR in Tanzania in August last year, I streamlined this workshop drastically. At NIMR, the internet was so weak that the participants weren’t able to download any software or test sequence files at all, so rather than being able to practice on their own machines, they had to make do with watching us demonstrate, which is not very inspiring. This time round, despite the internet playing hide and seek with some of the files, we managed to get pretty much everyone successfully base-calling the data (decoding the output into the DNA sequence), on both Mac and Windows laptops.

The slow internet had also been an issue previously when starting the sequencing runs: MinIONs need to connect to the Nanopore servers elsewhere in the world just to start up (after which they can disconnect), and in Tanzania, they just couldn’t connect. So there we had people trying to find WiFi and mobile hot spots, and IT people waving ethernet cables and WiFi dongles about. It was chaos, but after six attempts it started, to our immense collective relief. This time in Zambia, we started three sequencing runs simultaneously with no problems (apart from the aforementioned too-cold MinIONs).

Problems are always going to arise when pulling together an event with different disciplines and multiple groups involved. At times it can be incredibly frustrating, and if it happens in front of the participants, it can feel embarrassing that it looks like you don’t know what you’re doing. Whilst it can be a little awkward, I’ve learned to embrace the blips. Indeed, I’ve learned an awful lot more about running workshops and the techniques I’ve been teaching when troubleshooting the things that go wrong. I’ve learned to incorporate that into the training itself too. Things won’t be perfect when the participants take this away into their own settings either; far from it, they’re likely to encounter all sorts of issues. Learning how to sort them out themselves might well be one of the most useful lessons they take away.

I’ve added all of this experience into our PANDORA Global Health Network hub tutorial pages. You can click on the links to learn more about sequencing generally (including laboratory set up, bioinformatics and video tutorials), and specifically about tuberculosis sequencing using the Oxford Nanopore approach.

Linzy Elton is a postdoctoral researcher at the Centre for Clinical Microbiology at UCL.

IRIS profile;  PANDORA profile

In a previous blog post, Sreyashi Basu described how she set up a TB education initiative, Joi Hok! in Kolkata, including a painted scroll that was used as a visual aid.  Here she describes the scroll and explains how it is used.

Sreyashi Basu writes:

The Patachitra painting is made by Swarna Chitrakar, a traditional scroll painter who hails from a place called Naya village in Medinipur District. She sings about different aspects of TB as she unfurls the large scroll painting to depict the sequence of events. The culture of Patachitra music (or Patua Sangeet) have been passed down for generations and unlike other kinds of music is performed acapella style.

Here I sing about TB in Bengali, and unlike Swarna, am accompanied by my ukelele:

 

The painting is reproduced below with an explanation of the panels (view image here):
Read more about Sreyashi and her Joi Hok! initiative here on this blog post. Sreyashi is a recent UCL graduate, and is now studying for an MSc at the LSHTM. Twitter: @SreyashiBasu2

I met Sreyashi Basu in mid-January this year. She’d dropped in to say hello to Prof Tim McHugh, who’d been a project supervisor during her UCL BSc course, which had finished the previous summer. 

I was amazed at how she had spent the six months after graduating setting up a TB initiative in Kolkata from scratch, coming up with an original idea, and working with laboratory scientists, local artists, charities, and schools to engage children and communities with information about TB. She’d also designed materials, produced videos and set up a website.

I was keen to know more, and over email, Sreyashi told me about herself, and about her project, Joi Hok! (which means “Let victory be yours!”).

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Anton Chekhov’s life was cut short by tuberculosis in 1904. To mark International Clinical Trials Day, Prof Neil Stoker wonders how the then-incurable disease may have affected Chekov’s creativity and worldview, and reflects on the medical advances made by clinical trials since.

Last week I exited a performance of The Three Sisters by Chekhov at Islington’s Almeida Theatre.  The theatre was originally built in 1833 for the Islington Literary and Scientific Society, and had housed a laboratory, library and lecture theatre.  Discussion of politics and religion were not allowed, something I think Chekhov might have approved of. (more…)

 

Professor Neil Stoker attended two events to mark World TB Day 2019; firstly, a reception at the UK Parliament and secondly, our World TB Day Symposium. Neil shares his reflections here.

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The political and the personal

“28th of January. We have to strike a pretty miserable deal with our drug resistant TB patients. Their only, though by no means guaranteed, chance of cure is to take up to eight unpalatable and side effect-prone drugs for at least two years. Often after only a couple of weeks of treatment, patients will develop anticipatory gagging and vomiting just on seeing the tablets, or rashes so itchy they excoriate their arms and legs.

“Pyrazinamide can make their joints so painful, it’s difficult to stand. Clofazimine causes their skin to become discoloured like an overcooked fake tan – so that one remaining neighbour who didn’t already know that that patient had TB will now guess. Cycloserine can precipitate neurological and psychiatric symptoms, including psychosis and suicidal ideation. 

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