Missing in Action: Why Children Are Not Getting Tuberculosis Treatment Interview 25/11/2021 • Elaine Ruth Fletcher Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Many children with tuberculosis don’t get TB treatment because of challenges with diagnosis and reporting. Every day, more than 650 children around the world die from tuberculosis – largely because they have never had the chance to be diagnosed and treated. In the wake of the COVID-19 pandemic, children have fallen behind on almost every score – from access to schooling and nutrition to mental health and basic health services. But nowhere are those gaps more urgently in need of being addressed, than in the case of the world’s most deadly infectious disease. In commemoration of World Children’s Day 2021, observed 20 November, Health Policy Watch interviewed Dr Lucica Ditiu, executive director of the Stop TB Partnership, about how seriously children are lagging behind in TB diagnosis and treatment – and what can be done about it. Health Policy Watch: According to this year’s Global TB report, only 41% of the estimated 3.5 million children living with TB have been diagnosed and treated (2018-2020), and only 11% of those children with drug-resistant TB. What are the major factors driving the disturbing lack of children’s access to treatment? Lucica Ditiu: The children of today are paying the bill for the negligence of the past – for TB programmes being underfunded, as well as a lack of attention to children as a vulnerable group. Children, in the vast majority, get infected by adults and, usually, do not transmit the disease. So when you see a lot of children with TB, it means that there are a lot of adults passing it on. It’s a very good indicator of a very weak programme. The biggest problem is to find and diagnose the children with TB. One is about access. To find the children you need to ensure that their parents and families have access to the health system, and that is not secure. This is why the Universal Health Coverage Sustainable Development Goal (SDG) is very good. And the number of children with TB diagnosed and treated can be an indicator of how far along we are in reaching UHC. The other problem is one of diagnostic tools. We do not have good enough TB diagnosis tools for adults. A lot of diagnosis still relies on clinical examination and sputum smear microscopy, exactly like 100 years ago. With children is even more difficult – as children don’t produce sputum when they cough. So they are more difficult to diagnose. HPW: What about new TB tools like GeneXpert, which provides a rapid molecular diagnosis? Ditiu: Even GeneXpert and other rapid molecular tests rely on sputum, which children don’t produce. So you have to make do with X-rays, clinical approaches, or very extreme procedures like gastric aspirate, where a nasogastric tube is inserted through the nose to extract and diagnose TB based on gastric fluids. It is a very unpleasant and aggressive procedure. The child has to be intubated under anaesthesia. That means we need more advanced diagnostic tools for children. There are different groups, supported by STOP TB and our partners – such as UNITAID, and the Global Fund, looking at alternatives. One of the most advanced tools involves diagnosing TB in the stool of children, and there is very good progress on that. There are other groups looking at other types of diagnosis, based on DNA, based on blood, based even on cough. But in general, for TB, even though it’s one of the oldest known diseases, we still don’t have a point-of-care diagnostic, that people can self test at home. Diagnosis still requires heavy involvement of the health system and therefore access to diagnosis is a huge bottleneck. HPW: What are the particular hotspots for children’s TB? Ditiu: The largest numbers of TB-infected children are living in Asia, including India, Bangladesh, Indonesia, and Pakistan. In Africa, conversely, there are a lot of children with TB and HIV co-infections. And that is where the clinical progression of the disease is more accentuated. So if we look at high numbers, they are in Asia. If we look at the complicated forms, it’s more in Africa. In Eastern Europe and Russia, meanwhile, we see more of the drug-resistant TB forms among children. These are forms that cannot be easily treated in the usual six-month treatment regimes. Multi-drug resistant TB (MDR-TB) in children is also hugely underestimated. It’s very difficult to diagnose and treat – although if the child has a parent with drug-resistant TB, you can assume that he or she has drug-resistant forms too. It’s disastrous for children. The estimates are at least 30 000 children fall ill with drug-resistant TB every year, but the diagnosis and treatment coverage is very low. Only 12 200 children have been treated over the last three years (2018- 2020)! Whereas we estimate that there are around 200,000 children worldwide with MDR-TB. This is a huge and dramatic gap. Last year was the first year that WHO made estimates of children with MDR-TB. But we need WHO to lead on improving these estimates, including asking countries to notify and report upon children with drug-resistant TB by country. For MDR-TB, the treatment is at least one year instead of six months. We have specific oral formulations for the treatment of children with TB. And we have everything needed for a full oral regimen for children. Fortunately, 85% of countries have dropped the injectable treatments for MDR-TB, which have horrible side effects, including deafness. We still have some countries in which injectables are still used in children and we must immediately change that. But the big problem is to identify the children. HPW: In terms of HIV/TB coinfection, why are children left out? We have noted that children’s access to HIV treatment also lags far behind that of adults, with less than 40% of children 0-14 getting ARVs in 25 sub-Saharan African countries reviewed in 2020. One would think that if more HIV-infected children were being treated, they could also be screened for TB? Ditiu: For TB, the biggest challenge is still identifying the children who are TB co-infected. Once they are diagnosed, treating them is not such a big problem. For HIV, the problem is access to treatment. Why are children left behind? It could be partially attributable to the stigma of co-infection and I think it’s all about access, a matter of the weakest link in the chain. But indeed it’s a bit puzzling because the amount of resources for HIV treatment of children is very high. Hundreds of millions of dollars are available for diagnosis and treatment. What I can say is that, on the positive side, preventive TB treatment is recommended for people living with HIV. And in the African region, people living with HIV are for the most part receiving preventative TB treatment, including children But I think access to services is essential for TB and HIV. In the last two years, what we have seen as a result of the pandemic, is that people that are most vulnerable and have any barrier to access services – poverty, distance, gender, religion, color – have had even more problems in accessing services. HPW: What is Stop TB doing to address these access barriers that you’re describing? Ditiu: Our focus is on removing barriers for people to access diagnosis, treatment and care for TB. Some 80% of our budget of $20 million a year is distributed in various small grants to governments and civil society to pilot and test new ways to reach, diagnose and treat TB-infected people. For children, through our Global Drug Facility work funded by Japan and USAID, we pushed for the introduction of new children formulations for the treatment of drug-resistant TB, with specific doses and a great taste. This effort has supported the treatment of children with drug-resistant TB in more than 60 countries, but it also made people think more about drug-resistant TB in children. We also are the leading organization in ensuring that social justice, discrimination, stigma, gender disparities, and human rights are being properly addressed in TB programmes. Through our Challenge Facility for Civil Society granting mechanism, uniquely in the TB world, we provide grants only to local, grassroots organizations for their work on TB response. Supported mainly by USAID, with some funding from the Global Fund, we managed to grant around $6-7 million annually to these civil society and community organizations from TB high- burden countries. Our other granting mechanism – TB-REACH, which is an initiative funded by Canada and several other donors – provides since 2010 support to any organization, from government to faith-based, that is able to show they can find people infected with TB and get them diagnosed and treated, using local solutions. It basically funds local solutions using innovative solutions as well as new tools to remove barriers to access to early diagnosis and treatment and we grant around $15-20 million each year. With the support of TB REACH and other teams in Stop TB, we are also testing new tools and innovations, for instance, to support people with TB with treatment adherence. For instance, there are digital tools to ensure that when a TB-infected person opens his or her pillbox, a signal is sent to the portable phone of the health care worker who therefore will know that he or she took the treatment. We also have a team that identifies and supports new developers and start-ups in the TB space. Finally, under the STOP TB Partnership there are 9 different working groups, including the Working group for Childhood TB, led by Dr Farhana Amanulla, a Pakistani physician, who is one of the leading paediatric TB experts in the world. We try all of us to raise the awareness about children in TB as for a long time TB in children was not recognized. HPW: How did the COVID pandemic impact efforts to expand the detection and treatment of childhood TB? Ditiu: COVID had a very devastating impact on TB generally. Since TB and COVID are both airborne diseases, the TB hospitals, dispensaries, health posts and laboratories, were really refocused to COVID so TB hospital beds were really completely blocked off. There was zero occupancy in some cases for TB. In the countries that were thinking beyond COVID, however, there were more positive angles. They were able to do more. There were places where they did bi-directional testing – one leading example of this is India. You’d have someone coming in with symptoms of cough, weakness, you test for COVID but if there are indications that it could be TB, you would also do a TB test. Also, in terms of community outreach, people who traditionally did TB outreach were co-opted to do COVID, but in the smarter places they continued doing TB work as well. India did very well with this, and so did South Africa. Now, Indonesia is putting this in place as well as the Philippines, Costa Rica, India, Indonesia, and the Philippines, where TB outreach workers have been going door-to-door searching for both TB and COVID and offering support. In India, there was a TB hotline that embraced COVID diagnosis and treatment as well as Tb. You maximize what you have already in place. But the moment you just switch off, and just do COVID, not TB, that’s the moment we all lose.. So integration, creating platforms that ensure you have access to easier diagnosis and treatment, that is the key. HPW: That kind of integration is the gold standard for universal healthcare but it’s often very difficult to achieve. The health sector likes to work in silos. So how do you push for integration? Ditiu: What we need to be doing is reimagining TB care and, in fact, healthcare. We need to be doing it closer to our door, with community health workers and mobile units that come to your home and diagnosing several diseases at once in multi-diagnosis platforms. For instance, thanks to a grant from Canada, the USA and now the the UK government, our TB REACH team will look into the integration of diagnostic testing to show it works, that it is cost-efficient and so on. HPW: Unfortunately current trends seem to indicate movement in the wrong direction – for TB at least – with fewer people overall being diagnosed and treated in 2020 than before the pandemic began. Ditiu: It’s very dramatic what we see, and I think it will continue. Even though, of the people who die of TB, HIV and malaria, 60% die of TB, the TB response gets only 18% of Global Fund money, whereas HIV gets 50%, and malaria 32%. That is from a budget of $4 billion a year. So, in terms of financing for TB, while we are desperate, people on the ground are even more desperate, so we need to find a reason for hope. We push, in all of our discussions, the need for additional resources as well as for more integration. We are not always welcomed with love as TB is not high on any important agenda of key stakeholders. It’s like when you run after a possible partner and know that this is the future, but we are not always embraced. But we don’t give up, because we have to end TB by 2030. Dr Lucica Ditiu Dr Lucica Ditiu is a Romanian physician and public health expert who has served as Executive Director of the Stop TB Partnership since May 2011. Dr Ditiu has devoted her career to supporting people affected by TB, especially those who are the most vulnerable, stigmatized and living in impoverished communities. Prior to taking over her current role, she worked in the WHO and UN systems at every level – national, subregional, regional, and global. She eschews inflexible rules, hierarchy, and formal meetings. Under her watch, the Stop TB Partnership has evolved into a lean, accountable, innovative, and progressive operation that continuously challenges the status quo. Dr Ditiu is relentless in pushing for the inclusion of all people affected by TB in the programs and activities of the Stop TB Partnership. Her motto stems from the lyrics of a Romanian band: “The day you give up is the day you die.” Image Credits: University of Cape Town Lung Institute. Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Combat the infodemic in health information and support health policy reporting from the global South. 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