Persian polymath and physician Ibn Sina said over a thousand years ago, “There are no incurable diseases — only the lack of will.”
The United Nations (UN) High Level Meeting on Tuberculosis (TB), held in New York on 26 September, 2018, channeled Ibn Sina’s spirit to call upon the collective will of global leaders to end TB by 2030. Why TB? Because it is the top infectious killer in the world. In 2017, TB killed 1.6 million people across the world.
The story gets grimmer in India which contributes 27% of the global TB burden as per the World Health Organisation’s 2017 report. As of 2017, the number of people afflicted by TB in India was 2.79 million out of the 10.04 million globally. TB deaths in India were at 4.23 lakh out of the global body count of 16.74 lakh. In case of Multi-Drug Resistant TB, India’s death toll was 1.47 lakh out of the global death toll of 6.01 lakh.
India, however, has set an even more ambitious deadline to eliminate TB by 2025, a whole five years ahead of the UN deadline. Prime Minister Narendra Modi announced this during his speech at the launch of the TB Free India campaign a year ago.
By WHO’s definition, global elimination is reached when the prevalence rate of the infection is less than one person per million population. Currently the incidence rate is 211 per lakh population in India while the global incidence average is 140 per lakh population. In case of Multi Drug Resistant TB, the Indian incidence is 11 per lakh against the global average of 8.1 per lakh population.
So, is 2025 realistic? According to global charity Medecins Sans Frontieres’ survey of TB Policies and Practices in 29 countries, ‘Out of Step 2017’, India is woefully short on diagnostics, drugs and counselling, the three pillars of the TB treatment protocol. According to the recently launched Lancet Commission on TB, India scores high on political will but scores woefully low on many other counts. In fact, one of the papers of the Lancet report says India will achieve TB free status only after 2100 even after taking extreme measures.
Till recently, India was still heavily reliant on sputum microscopy as the main diagnostic method while WHO mandated nucleic acid amplification-based test CBNAAT for all. Sputum microscopy cannot detect drug resistance, TB in children or extra-pulmonary TB. Countries like Kenya, Brazil, Indonesia and Zimbabwe have already rolled out CBNAAT for all with suspected TB. India started rolling out CBNAAT recently and it is still not universal, the Lancet report says.
In case of counselling, while the Revised National TB Control Programme’s strategy mandates counsellor for MDR TB patients, many such posts are lying vacant still. To take a leaf out of India’s HIV-Aids programme, which mandated Integrated Counselling and Testing Centres, similar structures could and should have been a mainstay of India’s TB National Strategy Plan 2017-2025.
Access to drugs
When it comes to drugs, there have been reports of stock-outs of TB drugs across Odisha, Jharkhand and Uttar Pradesh. Up until two years ago, India relied on three doses a week instead of the daily regimen mandated by WHO. China and India were the only countries administering a weekly regimen of the TB drug. Coupled with drug disruption, weekly regimen is a cocktail for developing MDR TB.
Bedaquiline, an active ingredient in the drug used to treat TB, is being rolled out in a phased manner. But rationing means patients have to jump through hoops to access Bedaquiline.
While there has been a clamour for Bedaquiline and WHO Deputy Director General Dr Soumya Swaminathan (recently designated as Chief Scientist) has gone on record about its efficacy and the encouraging outcome of Bedaquiline-based treatment for MDR TB patients, India had only 1000 patients on the drug while the requirement is for almost 1,50,000 patients.
In the documentary Two Countries, Two Choices, Dr Ramanpreet Kaur shares the heart-wrenching process doctors go through to privilege one patient over another for Bedaquiline programme. Every MDR TB patient deserves it and should be provided with it, argued Advocate Anand Grover, the former UN Special Rapporteur for Right to Health who battled Bedaquiline rationing in court.
Add to this the complexity of the pharma major Johnson and Johnson (J&J) applying for patent on Bedaquiline. J&J has already patented the ingredient till 2023. This means no one else can manufacture generic versions of it for poor patients or poor countries.
Many public health champions see J&J’s application as ever-greening of the patent to continue to control price and profiteer. Indian TB survivor Nandita Venkatesan and South African survivor Phumez Tisile have teamed up to challenge this in Mumbai’s patent office under a progressive clause. Public health champions also point out that the development of Bedaquiline had considerable public resource investment. The National Institute of Health of the United States invested considerably in early development of the drug while non-profits like MSF contributed considerably in its phase-three trials.
While shadows loom large over access to one of the most effective drugs, there is mobilisation of support and international solidarity building up against the patent application. That the challenge is taking place in India is little wonder. It is home to the largest number of TB patients in the world and has some of the most progressive legislations on intellectual property rights for public access.
Good nutrition is also an essential component of TB treatment. But the Centre’s nutritional support is a meagre Rs 500 per person post detection of the disease. States like Punjab, Chhatisgarh, Kerala are topping up the central assistance for nutrition with their own budgets by more than double the amount. It is a recognition of the ridiculously low amount Rs 500 can be in these inflationary times for nutritionally challenged patients.
Dr Madhukar Pai, Associate Director of McGill University’s International TB Centre, in his editorial in British Medical Journal in 2017, raises the fundamental question of the chronic under-funding of India’s health sector. It has stagnated at 1.3% for far too long while 2.5% had been promised. WHO mandates at least 5% of budget allocation for health. In the 2019 budget, health got Rs 63,358 crore from the total kitty of Rs 27 lakh crore rupees (the total budget) — which is 1/5th of the amount allocated for defence. But the larger worry has been that the insurance programme Ayushman Bharat got more than double, up from Rs 2000 crore to Rs 6400 crore, while all the other programmes saw an increase of barely 3%. Hence, a marginal increase in health budget allocation doesn’t guarantee additional resources for the TB programme.
Dr Zarir Udwadia, a panellist on WHO’s panel on TB treatment protocol, said in a TED talk two years ago that new drugs are delayed, more laboratories are unscheduled, supply of more funds disrupted and the necessary social change unscheduled. Social change is necessary because of the stigma and discrimination TB patients face. Non-profits like Karnataka Health Promotion Trust are building a health workers’ cadre and community structures to dispel this.
Even if all the above factors are addressed, the debilitating socio-economic reasons will continue (i.e. poverty, over-crowded habitations, lack of sanitation, lack of access to nutritious food, smoking, alcoholism). Hence the spectre of TB will remain a clear and present danger.
Ahead of World TB Day on 24 March, the 2025 deadline sounds very high on rhetoric and very low on plan.
The good thing about this deadline is that it can serve as an inspiration. If it can make us outrage as a society that India’s TB burden is unconscionable, then it may be a worthwhile contribution.
Biraj Swain is a senior international development expert, media critic and ethicist. She works on governance, social development and human rights in South Asia, East Africa and the UN. She can be reached at firstname.lastname@example.org.
The author would like to acknowledge the inputs of Dr Prakash Kudur, Dr Reynold Washington, Dr Ravi Prakash and Dr S Rajaram, who are senior public health and data experts at the Karnataka Health Promotion Trust.