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Ending TB GLOBALCAUSE.CO.UK
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IMAGE: TAMARYN GREEN, MISS SOUTH AFRICA 2018 AND TB SURVIVOR, VISITING THE NELSON MANDELA CHILDREN’S HOSPITAL
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IN THIS ISSUE
The Global Fund How The Global Fund is helping to find unidentified TB patients
Aaron Oxley How high-burden countries are stepping up the fight against TB
World Health Organization A tougher response is needed to put an end to this disease
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CREDIT: STOP TB PARTNERSHIP; VILLAGERS IN THE MADHYA PRADESH STATE, INDIA
It’s time to take the threat of TB seriously Tuberculosis – a serious global health security threat in 2019. But it will be prevented and ended, says Lucica Ditiu, Executive Director of Stop TB Partnership
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he mycobacterium tuberculosis was ‘presented’ to the world 137 years ago, by Robert Koch, on 24 March – when he announced the discovery of the bacillus in Berlin. For 137 years humanity has tried to eliminate TB. However, rather than achieving it, we are faced now with a shocking situation. Today, TB is responsible for the death of more people than any other infectious disease and is the main cause of death in people living with HIV/ AIDS. Add to this the airborne aspect of the disease, the existence of drugresistant tuberculosis and the fact that any single person who is sick with the disease and not diagnosed and treated can infect up to 15 other individuals – and we have the perfect global health security threat.
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It took 136 years for us to take TB seriously It took us 136 years to have the first United Nations General Assembly discussing tuberculosis. Millions and millions of lives were lost due to this disease. The response against it, people that were affected by this disease, their families and those that fight against TB in their day to day work captured the attention of the highest decision makers in countries – Heads of states and governments – who decided to take TB very seriously. Last September, we had the first UNHLM meeting on TB. And we have now a very strong UN Political Declaration in which leaders of all member states agreed to ambitious targets on finding, diagnosing and
Any person who has TB and is not treated can infect up to 15 other individuals.”
treating all children and adults with TB. The declaration include targets on prevention, promoting a TB response that is centered on human rights, gender and equity, a threetimes increase in the funding for TB research and development of new tools, as well as doubling the funding needed for scale-up of coverage with quality-assured and accessible TB services for all. These leaders have committed to be held accountable if these targets are not achieved.
LUCICA DITIU Executive Director, Stop TB Partnership
The message for 2019: It’s TIME to deliver on the UNHLM TB commitments and fund the TB response! We waited for too long to have TB recognised as a global emergency and health threat. We waited for too long to have ambitious asks and commitments to end TB. Too much time passed without having the people affected by TB, communities and civil society at the center of the TB response. Now that we have all these and an inroad to make TB a disease of the past, we are more united and committed than ever to make things happen – and to ensure that everyone responsible and engaged is accountable for action and impact. Nothing will be possible without
commitment and without funding. To dramatically increase the coverage with quality-assured diagnosis and treatment for persons infected or sick with TB and secure access to everyone and to push for the development and roll-out of new tools, we will need an unprecedented level of funding in TB. Every year, between now and end of 2022, we will need $6.5-7 billion in additional funding. This is the gap we must close if we are to take TB seriously as a global health threat. We owe it to all the millions that died of TB who we could have saved. We owe it to us. IT’S TIME! Read more at globalcause.co.uk
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Q&A with Tamaryn Green, Miss South Africa 2018 and a TB survivor TB survivor and former Miss South Africa encourages others to speak up about their stories and raise awareness around the disease. Why have you decided to get involved with campaigning about TB awareness in your official year of reign? I am a TB survivor and believe the Miss SA platform is a brilliant one to raise awareness around the disease. TB is currently one of the most relevant and pressing global issues we face. As Miss South Africa speaking up about my experience, I contribute to breaking the stigma, that only certain people contract TB. For three years I feared speaking up about my experience. The Miss SA platform gave me the confidence to do so. I hope to encourage others to speak up about their stories. What was your own experience of TB? How did it affect you both emotionally and physically? I contracted TB in 2015 as a third year medical student. I managed to complete my six-month treatment, but it was no walk in the park. It was a tough and traumatising period in my life, for my family and for me. From taking medication every day to developing drug-induced hepatitis as result of that medication it was not easy. The hepatitis lead to symptoms of daily nausea, weakness and even delirium at times. The fear of isolation and discrimination as result of the stigma was emotionally and mentally taxing. The trauma of it all stuck with me for three years after being cured, even though I thought I’d dealt with it all.
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There is still a lot of stigma and discrimination surrounding TB. What problems can this cause regarding diagnosis and treatment? Stigma can cause a delay in patients seeking diagnosis or discontinuation of their treatment. The fear of family and friends finding out often leads to missing clinical appointments or not administering the medication. What can be done to effectively tackle the stigma surrounding TB? People must be better educated about tuberculosis. The misconceptions and myths must be broken. With better understanding comes more acceptance. More survivors and those affected by the illness should be encouraged to share their stories. Generally, do people understand enough about this disease? Or are there still misconceptions about it? No, they do not understand enough. There are still many misconceptions around tuberculosis. The only way to eradicate it is through health education and awareness. This is still a disease that kills millions. What needs to change to improve the outlook for TB patients? • More thorough research on the epidemiology of tuberculosis and the factors that act as barriers to easier diagnosis and treatment TAMARYN GREEN Miss South Africa 2018 and a TB survivor
• Multisectoral commitment to tackle the issue • Producing better medications with fewer side effects • Better education How big is the threat of extensively drug-resistant TB? The numerous cases of multi-drugresistant tuberculosis (MDR) TB are rising. One of the biggest problems is that the medication to treat MDR TB requires a longer duration of treatment with more side effects. This is a huge barrier and often leads to poor adherence from patients. What advice would you have for anyone who is concerned that they may have TB? Go get tested as soon as possible. Almost all clinics and hospitals are equipped to do TB testing and it won’t cost a thing.
Q&A: The hunt for TB’s ‘missing millions’ DR ELIUD WANDWALO Senior Disease Coordinator, TB, The Global Fund
Millions of people with TB are missed from the diagnosis and treatment radar, says Dr Eliud Wandwalo, Senior Disease Coordinator, TB, at The Global Fund. It’s imperative we find them. Most countries still use paper-based reporting systems.”
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very year, around 10 million people fall ill with TB but only around six million are identified. The remaining patients are ‘missing’. There are many different reasons for this, depending on the context and the country. Some patients may have poor access to TB treatment
and health services in general. Some countries don’t have TB services available in all facilities (— at a district level and above, they may have access, perhaps, but not at primary care level). There may be a shortage of health workers in some cases; or existing health workers may not have the appropriate skills and training to be able to diagnose TB. Why is it important that these patients are found? Because they will continue to infect others and we will not be able to control the disease and ultimately end TB. If someone has TB but is
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not diagnosed for a year, they can infect between 15 and 20 people. So, it’s critical that they are found as this is one of the surest ways to cut the chain of transmission in the community. How is The Global Fund helping to find unidentified patients? The Global Fund (a partnership between governments, civil society, the private sector and people affected by the disease) is responsible for 65% of all the international funding for critical interventions and programmes dealing with all forms of TB, including drug-resistant TB. Between 2018 and 2020, we’ve also decided to give special attention to 13 countries that contribute to about 75% of all missing people with TB globally. The countries are Bangladesh, Democratic Republic of Congo, Indonesia, Myanmar, Nigeria, Pakistan, Philippines, South Africa, Tanzania, Ukraine, Kenya, Mozambique and India
What are you doing to identify missing TB patients? We’re giving these countries additional money — $125 million — to help find missing people with TB. We’re also working with World Health Organization (WHO), Stop TB Partnership and other partners to ensure that these countries have the necessary tools and technical assistance they need to achieve the target of finding more people with TB. Such collaboration is vital. We cannot stop TB simply from a medical perspective. We can only do it by partnering with different stakeholders. For instance, in parts of Asia, unregulated private clinics are not compelled to register TB patients in the same way as public hospitals so, by working closely with the private sector, we are better able to identify those who have been diagnosed with TB at private facilities. Could better use of data help pinpoint missing patients? Yes. Inadequate data is one of the
challenges in finding the missing people with TB and TB control in general. Most of the affected countries do not have good data systems to identify the missing patients and understand the reasons for not accessing care. Most of the countries still use paper-based reporting systems especially at the lower level health facilities, so it’s not easy to share information that could help trace unidentified patients. We’re working to strengthen the data system to ensure real-time data is also available. Plus, we need to build capacity in data analysis so that clinicians know who is coming for treatment, where the epidemics are located etc. What about better use of technology? Using technology is at the center of the initiative to find the ‘missing millions’. We are deploying molecular based diagnostic tools such as GeneXpert, which is accurate and fast in identifying TB patients –
including those with drug resistant forms. We are supporting countries to use digital technology including mobile phones to communicate with patients. This means that, in some areas, patients don’t have to go to a health facility every day to take their medication. They can take it at home and post a video so that health workers know they’ve had it. That kind of innovation really helps move the needle. How optimistic are you that the 'missing millions' will be found? We've already seen great success. For example, in India, there has been a sharp increase in the number of ‘found’ TB patients because of partnership with the private sector. We’ve partnered with this sector in the past, but it’s been rather a one-way street. This time we’re ensuring that they are at the heart of the collaboration — and that it makes sense for them from a business perspective. We are
seeing great progress also in many African countries such as Tanzania, Mozambique and Kenya. We need more funding to reach the WHO target of ending TB by 2030. Governments need to increase domestic funding for TB and the international community needs to step up the fight against epidemics like TB by supporting The Global Fund. In October 2019, President Macron will host the Global Fund’s Sixth Replenishment Conference in Lyon. This replenishment seeks to raise at least US$14 billion to help save 16 million lives, avert 234 million infections and help the world get back on track to end these diseases.
Read more at globalcause.co.uk
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From rhetoric to action in high-burden countries
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AARON OXLEY Executive Director, RESULTS UK
High-burden countries are stepping up the fight against TB politically, programmatically and scientifically.
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uberculosis (TB) is ancient: it was a cause of death for ancient Egyptian mummies. The bacterial cause was discovered back in 1882 and declared a global health emergency a quarter-century ago in 1993. Yet today, it remains the biggest infectious disease killer globally, with 10 million new cases of TB and 1.6 million TB deaths in 2017. 2018: A historic year in the fight against TB 2018 was a politically transformative year in the fight against tuberculosis, with world leaders meeting in September for the first ever UN High-Level Meeting on TB (HLM). This meeting wouldn’t have happened without a strong push from high-burden countries. In preparation for the HLM, the Russian Federation hosted a Global Ministerial Conference on Ending TB in November 2017. It brought together 75 ministers and 114 country delegations, and adopted the Moscow Declaration to End TB. President Putin personally opened the conference and committed Russia to do more. The following January, India’s Prime Minister Modi hosted the Delhi End TB Summit, personally delivering the keynote and reaffirming his government’s commitment to end TB in India by 2025, five years ahead of the Global Goal target of 2030. Russia is home to 10% of those getting drug-resistant TB, and 27% of the world’s TB cases are in India, so these Heads of States’ commitments really matter.
There were 1.6 million TB deaths in 2017.” South Africa: We cannot fight AIDS without fighting TB too South Africa, a country with some of the highest rates of TB and TB-HIV co-infection in the world, was a driving force behind holding the HLM. President Ramaphosa delivered South Africa’s official intervention, recalling words Nelson Mandela spoke in 2004: “It is a blessing that the world has made defeating AIDS top priority, but TB remains ignored,” reiterating that the world cannot defeat AIDS without fighting TB too. South Africa, India and China all leading research against TB High-burden countries have begun putting their money where their mouth are. India and China are the second and third leading producers of TB research publications, while South Africa is at the forefront of vaccine research and one of only three countries in the world who have met their ‘Fair Share’ TB R&D spending target. South Africa also leads the way in scaling up use of new diagnostic tools and medicines for those with drug-resistant TB, to ensure they do not experience side effects associated with older, more toxic drugs, such as deafness. Donor nations must continue to support the fight against AIDS, TB and malaria The ambitious commitments made in the Political Declaration must be translated to action, but it’s not just high-burden countries that must step up. The Global Fund to Fight AIDS, tuberculosis, and malaria is looking to donor nations to finance the global response at its next replenishment in Lyon this October. With the Global Fund currently accounting for 65% of all international financing for TB, there are few better ways to channel new money into the fight. Read more at globalcause.co.uk
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Ending tuberculosis: It’s time to move commitments to action Byline: Tony Greenway
DR TEREZA KASAEVA Director of the Global Tuberculosis (TB) Programme, World Health Organization (WHO)
TB is a curable disease that still kills millions. Governments and heads of state have agreed that a tougher response is needed to put an end to this disease.
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hen it comes to tackling tuberculosis, the time for talking is over, says Dr Tereza Kasaeva, Director of the Global Tuberculosis (TB) Programme at the World Health Organization (WHO). Urgent action is needed if we are to stop people dying from this terrible — and curable — disease. That's why the theme of this year's World TB Day is: ‘It’s time.’ “World TB Day is such an important event for us,” says Dr Kasaeva. “It’s when we can give as much attention as possible to the devastating problem of TB. After receiving commitments from two very important meetings — the first WHO Global Ministerial Conference on Ending TB in Moscow in 2017 and the first-ever UN General Assembly High-Level Meeting on TB in New York in 2018 — we now have strong political declarations in place from heads of state and governments with concrete targets and timeframes. So, on this World TB Day we can say: ‘It’s time for action, engagement, concrete next steps, and accountability for reaching the targets we have set.’ It’s time to put the accent on urgency and impact.” Recognising the challenges and opportunities of combatting TB Dr Kasaeva believes the UN HighLevel Meeting was a turning point for TB awareness. “For the first time, the disease was discussed at the highest political level,” she says. “This was necessary because progress in combatting TB is still too slow. More than 10 million people fall ill with TB annually and more than 1.6 million die from it. It's the number one infectious disease killer in the world and has become more dangerous with multidrug-resistant forms of tuberculosis. The UN High-Level Meeting gave us an opportunity to outline the
scale of the problem we face and to call for urgent action — and, to that end, it was very successful.” Indeed, key TB commitments were made at the UN High-Level Meeting. These include diagnosing and treating 40 million people with TB, and scaling-up access to preventive treatment to 30 million people most at risk of TB by 2022; and ending stigma and discrimination against people with TB. “TB programmes are chronically underfunded in some countries,” says Dr Kasaeva. “This is why the target in the political declaration to invest $13 billion on TB activities and $2 billion for TB research annually by 2022 is so important.”
More than 10 million people fall ill with TB annually.” TB needs multisectoral collaboration to protect wider economic health To win the fight against TB, multisectoral engagement is vital, insists Dr Kasaeva. If key stakeholders across sectors have clear responsibilities, transparent processes, and regularly measure and monitor the impact of their activities, it will be easier to keep national and global progress towards these new targets on track. Better collaboration between traditional partners and multisectoral stakeholders including civil society is also needed. “TB is a disease that is clearly aligned with other global problems and the broader SDG agenda, such as poverty, malnutrition and climate change, among others,” explains Dr Kasaeva. “We need to tackle these problems to prevent the development of disease and save millions of lives.” “WHO is developing a
multisectoral accountability framework as requested in the political declaration to promote great collaboration and accountability across sectors. Countries are being supported to adapt this in 2019.” A different approach needed for better results To ensure these promises are kept and the response to end TB is accelerated, the WHO DirectorGeneral will support UN Secretary General in delivering a progress report in 2020, ahead of a more comprehensive review by heads of state and government at the next UN High-Level Meeting, expected in 2023. Dr Kasaeva admits that meeting these targets will not be easy but believes there is reason for optimism. “Several countries, including India, South Africa, the Russian Federation, Vietnam, and Philippines are beginning to translate commitments made in the UN High-Level Meeting political declaration to action. This includes updating national action plans, increasing national budgets for TB, and strengthening/ establishing national accountability mechanisms. These efforts are fully aligned with the WHO leadership’s overall focus towards achieving universal health coverage. If the world takes an innovative and effective approach to TB prevention, diagnosis and care, there is real reason for hope, says Dr Kasaeva. But there's no time to waste. “We need to move effectively and urgently at both a global level and country level to identify priority actions,” she stresses. “It cannot be ‘business as usual’ anymore.”
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CREDIT: FIND/BEN PHILLIPS
Why we need to revolutionise TB diagnosis - and how we can Byline: Tony Greenway
DR CATHARINA BOEHME Chief Executive Officer, Foundation for Innovative New Diagnostics (FIND)
New, innovative diagnostic tools are desperately needed if the TB community is to find millions of undiagnosed patients — and also reverse the spread of TB drug-resistance.
Sputum samples at the Chest Clinic (TB) at Lok Nayak Jai Prakash Narayan Hospital, Delhi. December 2017
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n 2017, 6.4 million new TB cases were officially reported — but it’s thought that 3.6 million additional cases went undiagnosed and unreported. It’s vital we find these ‘missing millions' says Dr Catharina Boehme, Chief Executive
Officer at FIND. To do that, “we need tests that are simple to use, cheap, and easily delivered at the most decentralised levels of care and within the community — wherever patients make initial contact with the health system,” she explains.
Game-changing tools are getting closer Most TB tests are based on sputum — a sample that children and HIV positive people can have a hard time producing. The potential for a test that can detect TB in urine is well known, but so far, reliability has proved to be a stumbling block. Things may be about to change though. A new generation of rapid diagnostic tests that can analyse urine samples is being developed, initially to detect TB in people who are HIV positive. These tests work in a similar way to pregnancy tests, and take less than an hour to generate a result. With their potential also being explored for use in wider populations, they could have a dramatic impact on the TB diagnostic landscape. FIND is evaluating these new
generation tests, and many countries are keen to participate in trials. “This clearly shows how much governments want to tackle this problem and how desperate they are for new tools,” says Dr Boehme. Improved diagnostic tools are also needed for better diagnosis of drug-resistant TB. “At present, only a fraction of drug-resistant cases are detected,” says Dr Boehme. “The spread of drug resistance cannot be reversed if these aren't found and adequately treated.” It’s why FIND is also currently working with partners to develop a cartridge to test for extensively drug-resistant (XDR) TB. A vicious cycle puts TB R&D at risk Without improved diagnostics — alongside an effective vaccine that
will prevent TB in young and old alike, and better drugs to shorten treatment for patients — TB will never be defeated. There are still scientific challenges to overcome but, as highlighted at last year’s UN HighLevel Meeting, the “end TB” agenda must be supported by both political will and funding. “These challenges have created a vicious cycle that has so far hampered progress in diagnostic R&D,” says Dr Boehme. For the sake of the 10 million people who contract TB every year, that urgently needs to change.
Read more at finddx.org @FINDdx
TB survivor story: Marius gets back on his feet CREDIT: TB ALLIANCE
A South African cement worker tells the story of his long fight with extensively drug-resistant TB, including his experience with a novel drug treatment.
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arius was a cement worker in South Africa, a country that has among the highest rates of TB in the world. He recalls, back in 2011, the first time he started to cough. Try as he could to ignore it, he couldn’t. Finally, he was diagnosed with TB, and placed on six months of treatment. He had to go to the clinic each day to collect the medicine, which was interfering with his job. So he did what many do — he stopped taking the drugs. CREDIT: TB ALLIANCE
One day of pills currently used to treat XDR-TB MEDIAPLANET
“For nine months I could only stay lying down” Marius began feeling tired, losing weight, and couldn’t eat. The next thing he knew, he was lying on the ground, unable to move. An ambulance brought him to Brooklyn Chest Hospital, where he was diagnosed with XDR-TB, or extensively drug resistant TB. The treatment was almost too much for him to bear. “I couldn’t take it anymore,” he said. “For nine months I took 23 tablets every day. Every day, an injection. It was terrible and still I was not being cured. I felt dizzy the whole day and could only stay lying down.” New hope from an experimental drug regimen That’s when Marius was placed on a Phase 3 clinical trial, run by the nonprofit TB Alliance, evaluating a new treatment for his condition. He took an experimental, three-drug treatment for six months, was rid of TB, and could finally, at long last, go home. The lead investigator for the trial,
Dr Francesca Conradie, says: “There’s never been a trial like this before. Up until now it’s been a matter of trying our hardest and crossing our fingers.” The World Health Organization estimates that the historical treatment success rate for XDR-TB is about 34%. According to interim results presented at the 2018 Union World Conference on Tuberculosis and Lung Health, the first 75 participants in the trial Marius participated in reached a durable cure rate of 89% after six months of treatment and an additional six months of posttreatment follow-up. “This new treatment is good,” says Marius. “I can do what I want to do. And I feel like the old Marius again.”
Marius began feeling tired, losing weight, and couldn’t eat. The next thing he knew, he was lying on the ground, unable to move.”
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MARIUS An XDR-TB survivor in South Africa GLOBALCAUSE.CO.UK
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