On the eve of the World Lung Conference in Cape Town, many of us crowded into the auditorium at the convention centre to listen to Grania Brigden, MSF Access Campaign TB advisor, from Médecins Sans Frontières‎ (MSF) as she presented highlights from the key findings of Out of Step—a report of a 24 country survey of policies and practices used today to guide tuberculosis (TB) diagnosis and treatment. The report paints an alarming picture of the gap between policy, programmes, and the needs on the ground. Based on this report most high burden countries seem vastly unprepared to meet globally endorsed goals to reduce TB incidence and death by more than 90% over the next 20 years. 

There was agreement in the audience as many activists, patients, and programme implementers recognised these realities. An activist from South Africa told me wryly: “First they can’t diagnose us. When they do, they don’t have drugs to treat us.” This is a concern that runs deep among many international delegates. Controlling the global TB epidemic will begin with countries adopting and implementing the 14 key policies and practices identified in the report, which are currently recommended by World Health Organization (WHO). However, this is easier said than done.

Of the 24 countries surveyed, only 8% of the countries with a high burden of TB are enacting the policies necessary for fighting this epidemic, with many citing numerous reasons for not doing so such as shrinking budgets or limited operational capacity. The gap between accurate and affordable diagnosis remains significant as highly-sensitive molecular tests are unavailable in many high-burden countries. In India the access to molecular diagnostics remains low and is largely unaffordable despite claims of early procurement. Similarly, retreatment regimens, which amplify drug resistance continue to be used.

The rising numbers of multi-drug resistant (MDR TB) in many high burden countries such as India, Russia, and China should be ringing alarm bells for policy makers.

A recent WHO Report stated that only one in four cases of drug resistant TB get diagnosed and treated. This has enormous implications for transmission and disease control. It also has budgetary implications. MDR TB needs an effective prevention strategy which subsumes diagnosis and treatment. Only about 12% of countries surveyed have all of the existing drugs used to treat drug-resistant TB on their national essential medicine lists. While most countries have a process to provide access to new drugs, access remains limited due to delays. In some cases companies do not submit their drugs for registration in the countries that need them making them inaccessible.

How do poor patients survive in this climate of apathy? Who responds to their needs? I recall interviewing the first patient to be put on bedaquiline at Hinduja Hospital in Mumbai—a city considered the epicenter of drug resistance in India. He spoke movingly about staring death in the face and the hope this drug provided to him. There are thousands like him in India alone, though most cannot access or afford this drug. Who will give them hope?

It is apparent that countries need to act urgently if they wish to address TB comprehensively. Yet there is a palpable lack of urgency from government officials. At the heart of this is continuing disengagement of policy makers with TB—who don’t view it as a priority. Some progress on this has been made with the Global TB Caucus but we don’t know yet if this will deliver. Political representatives within high-burden countries need to urgently push for increased resources and more inclusive programmes. Moreover discussions on TB policy need to include patients and move to addressing TB from an over medicalised disease approach to community led and based approaches—a message echoed by numerous patients.

Is the world ready to defeat TB? Not even close. Do we have a new agenda for lung health as the World Lung Conference promises? Perhaps if we look towards increased advocacy, accountability, and sustained patient movements. A broad based global movement is urgently needed in TB where patients need to seek accountability and push for change.

Chapal Mehra is a public health specialist and strategic Communications Expert based in New Delhi.

Competing interests: None declared.