It’s an airborne disease that kills millions every year, and affects the lives of millions more, yet it is curable and could ultimately be eradicated – but only if governments and the public make a concerted push to do so
By Sue George
Tuberculosis features among the top 10 of all causes of death globally, and is the leading cause of death from an infectious disease. Without immediate concrete action, research conducted by KPMG on behalf of the Global TB Caucus estimates that 28 million people will have died from tuberculosis (TB) between 2015 and 2030, at a global economic cost of $1tn.
And yet, it can be effectively diagnosed, treated and cured. So what gives?
A bacterial infection, TB is spread by minute droplets in the air when a person with active pulmonary (or lung) TB coughs, sneezes or spits. When someone is infected with TB, the bacteria remains in their body, but they cannot transmit the disease themselves. Many people have this type of latent TB or TB infection. But if their immune system is affected, for instance if they have other conditions such as diabetes, are smokers or have HIV, then it may become active, and transferable.
The disease is treatable and curable, but the enduring problem is that many people with TB are not diagnosed or treated. In its early stages, active TB can have very mild symptoms so there may be delays in seeking care. At this stage, it can be transmitted.
The World Health Organization states that in 2016 alone, 1.7 million people died of TB and there were 10.4m new cases of the disease. And while anyone at all could contract TB, 85% of the cases occur in Asia and Africa. India has the world’s highest TB burden, with an estimated 2.79m cases in 2016.
Nandita Venkatesan from Mumbai, now 28, was just 17 when she was first diagnosed with intestinal TB. While the most common form of TB is pulmonary, it can affect other parts of the body too. Although she recovered after 18 months of anti-TB medication, six years later she had a severe reinfection. This time, the drugs were ineffective.
“I had TB in the large intestine,” she says. “It [required] life-saving surgery.” In total, she had six operations. The TB had spread to other parts of her body and the injections she took to treat it had a permanent side-effect: she now has a serious hearing impairment.
One of the issues hindering the progress of TB eradication may be that it has not received as much of a public or media profile as other diseases such as HIV. Alongside her job as a financial journalist, Venkatesan is keen to raise awareness about TB. “There is a gap because all the voices [on TB] were doctors or researchers, too few of whom have suffered from it,” she says. Due to her activism, others affected by TB increasingly contact her.
Lucica Ditiu is executive director of the Stop TB Partnership, a UN hosted entity with more than 1,700 formal partners, including NGOs, researchers, technical partners, governments, TB survivors, donors, civil society groups and private sector organisations that seek to eradicate TB.
The TB community and other stakeholder led by the Stop TB Partnership have developed “five key asks” – demands for action to accelerate progress to end TB – as its key proposal for the political declaration to be issued at the first ever UN high level meeting (UN HLM) on TB, under the theme of United to end tuberculosis: an urgent global response to a global epidemic.
Government action
Governments should commit to diagnosing and treating the huge numbers of people currently not being reached.
“We have to diagnose and treat a total of 40 million people between now and 2022,” says Ditiu. “But we are almost at 2020 and seeing very limited progress. We are facing a ticking bomb. We know that 10-12 people per year are infected by each person with untreated TB.”
Focus on human rights
The next ask is to transform the response to TB, so that it is based on human rights and equity.
“Bacteria doesn’t discriminate but policies often do,” says Joanne Carter, executive director of Results, a US-based non-profit focused on ending global poverty and vice chair of Stop TB Partnership. “We need to recognise that people have been left behind due to poverty and stigma.” These people could include migrant workers, marginalised ethnic groups, sex workers – many of the most vulnerable people are not accessing quality treatment. “We are not at the point where we need to sustain the response [to TB] but have to scale it up. At current levels, we will be on track for failure,” she says.
New tools for diagnosis and treatment
Another of the demands is for “new tools” – more effective ways to diagnose or treat TB, and new, shorter, cheaper, more efficient and less toxic drug regimens. This is particularly important because, while there is currently no point of care TB diagnosis test, there has also been a dramatic resurgence of drug-resistant forms of TB, for which treatment is as long, costly and as toxic as chemotherapy.
“For a long time, the increase in drug resistant forms was due mainly to bad management of TB, but recently we are seeing more and more transmission take place,” says Ditiu. This could include incomplete treatment regimens, drugs of unknown quality, people not being properly supported and therefore taking their TB drugs only until their immediate symptoms disappeared, meaning they were still infectious. The WHO estimates that 490,000 people around the world developed multidrug-resistant TB in 2016, and an additional 110,000 people developed a resistance to a first-line (first treatment) TB drug.
Significantly more funding
While the Global Fund and US government are the main external donors for TB, along with the governments of many affected countries, the partnership reckons there is a need of $13bn a year between 2018-2022 for implementation and scale-up of TB response and $2.1bn for TB research and development. Considering the available funding, the gap left is around $7bn a year for implementation in addition to a $1.3bn annual funding gap for research. The fourth “ask” seeks for this to be closed as a matter of urgency.
Political accountability
The final demand is for political commitment from global and especially national leadership, together with clear accountability and regular independent reviews of progress. The UN HLM to End TB, which will take place on 26 September will ensure that heads of state and governments come together to endorse a political declaration that will make political and financial commitments to fund a comprehensive TB response to end TB by 2030.
While other infectious diseases such as HIV have been the focus of such high-level meetings before, this is the first time that one has been devoted to TB.
“I am happy that the UN HLM on TB is happening,” says Ditiu, “but this is not the end – this is the beginning of what should be a huge effort over the next four years to achieve what we plan to and to end TB.”
