Disease control in India is a story of contradictions and tuberculosis (TB) is no exception. Earlier this week, India’s Health Minister, J.P. Nadda, spoke at the World Health Organisation (WHO) Regional Health Ministers’ meeting in Delhi — on TB — stating his government’s intention to address the disease aggressively. Not too long ago, India’s Finance Minister too spoke of TB elimination.
Welcome and well-intentioned, these claims are at odds with India’s full-blown epidemic of TB and drug-resistant (DR) TB — a crisis that is decades in the making, from benign neglect by successive administrations. TB is a staggering epidemic that affects 2.8 million and kills 485,000 Indians, pushing individuals, families and communities into poverty, suffering and debt. Such claims then must be borne out by thoughtful strategy, commitment backed by sufficient funding. However, these seem to be missing. India recently released a draft of its latest strategic five-year plan to control TB which takes the approach to find, treat, prevent and build for TB control on a massive scale. However, the plan ignores the fact that most Indians affected by TB do not seek care under the government programme. It is usually their last choice. Even the poorest prefer to pay and go to the private sector because it is efficient and accessible. They land up in the public sector penniless and much sicker. That most TB-affected need efficient care with dignity and respect has escaped India’s health programme planners.
TB’s institutionalised neglect is not limited to the government alone. In its recently released first ever priority list of antibiotic-resistant bacteria, the WHO didn’t include DR-TB. The list is supposed to provide direction globally to government priorities for research on bacteria for which we need new antibiotics. There is already shrinking support for research into new TB antibiotics primarily because TB is a disease with a large market at the base of the pyramid. This is borne by the fact that despite its massive human costs, only two drugs have been developed in four decades and remain expensive and inaccessible to most. Such omissions let the pharmaceutical sector and government off the hook from pressure to invest in research for new drugs.
Why is TB ignored? Perhaps because its fundamentals are beyond the capacity of the health establishment. A lack of preventive strategies, poor nutrition, and rapid urbanisation with limited public awareness all feed India’s epidemic. Many of these are domains traditionally outside of disease control programmes though they have an impact on disease control.
Mr. Nadda listed numerous achievements among which were mandatory case notification from the private sector, inclusion of new Cartridge Based Nucleic Acid Amplification Test (CB NAAT) machines for early detection, and the introduction of new drugs such as Bedaquiline. What missed mention was that the increased case notification is but only a fraction of the cases detected and treated privately. The government has failed to implement TB notification successfully. India does have 500 new CB NAAT machines but they remain underutilised, highly rationed and of limited reach to most of the TB-affected. We still don’t know the government’s forecasting mechanism for procuring cartridges to make these tests accessible. What’s more, most TB patients rarely get tested upfront for drug resistance. As a result, numerous cases of DR-TB remain undiagnosed, poorly treated and often lost or what the WHO terms “missing”.
Access to new drugs like Bedaquiline is best explained in the struggle of an 18-year-old girl who desperately needed the drug and went to the Supreme Court to get it. Had she got this treatment sooner, she may not have died.
India’s spending per TB patient is the least among BRICS countries. The answers lie in expanding the capacity of the public sector, aggressively engaging the private sector, increasing budgets, and creating a massive campaign to ensure awareness and empowerment among those most severely affected. We need access to a free and reliable TB test, counselling, free high-quality treatment, and economic and nutritional support. Until then, TB will continue to devastate the foundations of this aspirational superpower.