Before the COVID-19 pandemic, a much less headline-grabbing disease was responsible for the majority of infectious disease deaths: tuberculosis. In 2020 alone, it killed 1.5 million people according to the World Health Organization’s latest “Global Tuberculosis Report.” The same year, COVID-19 claimed the lives of 1.7 million people but received wall-to-wall media coverage — and much more attention and investment than TB.
That was despite 2018 seeing the inaugural United Nations General Assembly high-level meeting on tuberculosis, where heads of state committed to a set of ambitious targets to be reached by 2022, including to treat 40 million people and to reduce the incidence rate by 20%.
Opinion: Tuberculosis, an infectious killer that never got its due
As the world invests in preparedness for future pandemics, existing health crises like tuberculosis are ignored. TB does not feature in crucial conversations about global health, moving us further away from the goal of ending the epidemic by 2030.
With just eight months left to achieve those targets, the global health community is far from reaching them, and the COVID-19 pandemic has largely reversed the small signs of progress seen before 2020. For the first time in over a decade, TB deaths have increased as a result of reduced access to diagnosis and treatment, with already weak health systems overstretched by the pandemic response.
Devex spoke to Dr. Lucica Ditiu, executive director of the Stop TB Partnership, about creating momentum in advance of next year’s U.N. high-level meeting on TB, why the disease needs more timely data, and the huge funding gap still facing one of the world’s most ancient diseases.
The conversation has been edited for length and clarity.
TB is one of the world’s deadliest diseases, claiming three lives every minute. Yet current investment in the TB response means that close to 40% of people with TB are missed by the health care system. What is needed to address this urgent funding gap?
The leaders of the world need to understand the risk that TB is posing to the world. Very few people understand that TB is airborne, and none of us are protected until everyone is protected. It's very similar to COVID-19. The more people are left undiagnosed and untreated, the more people will become sick.
Leaders need to understand the burden that TB places on their populations and economies. In the countries that have a high burden — where their population is dying because of TB and their economies are heavily impacted because people with TB don't go to work — that needs to be understood in order for the money to come.
Investing in TB doesn't mean that you invest in a very vertical approach [but rather in strengthening entire health systems]. Actually, [addressing] TB is the biggest proxy for universal health coverage. When you have people with so many vulnerabilities like people with TB, the moment you reach them with services, that's when you know you are close to UHC.
Because TB is airborne, investments in TB helped [the] COVID [response] and will help any future airborne pandemics. The response in most countries was built on the hospitals, laboratories, and the nurses and the doctors dealing with TB. Even patients and survivors with TB were able to provide a lot of good advice and support to people with COVID because they know what stigma is, they know very well what isolation is.
Do most low- and middle-income countries have the data systems in place to monitor the disease burden and identify where investments are needed?
Unfortunately, the way that the data for TB works is very old-fashioned. People are still working with papers, manually inputting data into systems. The validated data that we have right now is from 2020 — from two years ago. For me, having to work with the 2020 numbers is not workable. We need real-time data to properly assess what the actual needs are.
COVID showed us that it's possible to do things differently, and low-income countries were able to put COVID monitoring systems in place really quickly. It’s not a matter of money; it's a matter of willingness. The more countries shift towards live data, the better the response will be. The only country that has this is India. They have a data system for TB called Nikshay, and any of us can link to it and see the data as of yesterday — by gender, by age group. It's what the world has for COVID, so why not for TB?
The rapid development of COVID-19 vaccines and therapeutics has shown that a quick global response is possible. What lessons learned from the pandemic can help strengthen the TB response?
Again, it’s not a matter of money. It’s a matter of willingness and fear — but not fear for the lives of people like the ones that are dealing with TB and coming from low-income countries, but the fear for the lives of people from high-income countries. That seems to be the trigger for having new tools developed overnight. So fear, in certain places, triggers huge amounts of funding.
But there is a way in which tools can be developed and rolled out much more rapidly. This is the first time we [the global community] developed and rolled out a vaccine in only 10 months. The COVID-19 vaccines were developed at record speed. You develop diagnosis, you develop treatments, in less than a year. There was a great collaboration between the researchers.
Why can’t this apply to other diseases? That should be the norm and not the exception, and that's what we want for TB. We have asked for a TB vaccine for years, and we only have one that's 100 years old. We still are not even close to getting one. Why do we not see the same energy and passion?
What’s the role of civil society in tackling barriers facing low-income communities in terms of access to TB services?
Civil society groups are the ones based in the community and working closely with the people. If communities have funding and are really prepared, and civil society networks are trained and able to intervene, then you can go to them at other times and work with them to be your front liners reaching people.
Civil society and community can be there to really convince or even explain what's going on; convince people to get tested, to be treated, to take preventive treatment, get vaccinated; help them navigate the system; and speak in their own language. They are able to find the members of the community much better than any public health sector [worker]. So if we are not able to really engage and work with them, it will be really a big issue in the future.
For example, one of the things that we were able to do in the first weeks of the war in Ukraine was to repurpose some of the grants for civil society organizations in Ukraine and neighboring countries. They were able to get in touch with each other and to procure and to deliver products, goods, medicines, and food to people with TB much more easily and more efficiently. Of course, you need the bigger humanitarian corridors and the big donors. But until these are in place, you need to work with the people that are on the ground.
Over 1 million children and young adolescents fall ill with TB every year. Yet there is a huge gap in detecting TB among this age group, and only 50% are actually spotted by the system. Why should pediatric TB be a priority, and why does it need a different approach?
Kids very rarely transmit the disease, and they don't get infected between each other; they are getting it from an adult. Having children with TB, sometimes even drug-resistant TB, in 2022 is really a big crime because for kids it's a very difficult disease. It's very difficult to diagnose children with TB, and until recently, we didn't have a specific [treatment] formulation for children.
There was a big mistake made in the late 1990s until almost 2010. At that time, unfortunately, the international recommendations were that the focus should be on people who spread the disease. So we forgot about children, because they were not considered dangerous to others. That's why, for a long time, data on children with TB didn’t even exist at the WHO level, and countries were not requested to report it. So the attention [to the issue of children with TB] was not there until maybe eight to nine years ago.
What’s your one call to action to global leaders ahead of the 2023 U.N. high-level meeting on TB?
To fund the TB response to the extent that is needed, in such a way that will ensure access to quality-assured and affordable diagnosis, treatment, prevention, and care for everyone that needs it. My call to action is to provide the money to save the lives of people with TB and protect the future.
Right now, we only have around 30%-40% of what is actually needed for the TB response. A significant part of the missing money usually comes from out-of-pocket expenses from poor people that are self-funding their care — or more precisely, they self-fund their access to care. The ministers of the countries need to understand that when the budgets are constructed, they should be constructed keeping in mind not how many people they found [with TB], but how many people are infected and how many people are not detected.
Visit the Talking TB series for more coverage on how we can eliminate tuberculosis by 2030. The time for a paradigm shift and a renewed focus on funding, research, and global solutions is now. Join the conversation by using the hashtag #TalkingTB.