One of my earliest well-wishers and friends from the indigenous communities was Thimmaiah. He lived in Hosahalli tribal colony adjoining the Bandipur National Park in Heggadadevanakote taluk of Mysore district. When I went there last, I did miss seeing Thimmaiah, one of the first Jenukurubas to have welcomed me to their homes.
Thimmaiah was one of the local tribal chieftains and also the first to take me into the Gundre forests, proudly show me the final resting places of his ancestors, climb the ‘matthi’ tree effortlessly, and get me its sap to drink. He died months ago but I felt a surge of sadness engulf me once more when I visited the colony again. Though he was in his early seventies then, I felt angry that neither our health systems nor I could do much for him.
Thimmaiah had succumbed to Tuberculosis. As a physician, I was left with a nagging doubt that his death could have been prevented. For years, he lived with an irritating cough and would have angry exchanges with our health worker, who felt that he was not very compliant in taking his medications regularly. Despite repeated requests, cajoling and chiding, Thimmaiah did not think that his disease was something serious enough to warrant taking so many medications for so many months.
Even as Thimmaiah’s loss was gnawing at me, I got to know about the death of Suresh (name changed). Suresh was a painter by profession and lived in Mysore with his wife and two young daughters. Both his daughters were in school nurturing dreams of their own, while his wife added to the family kitty by working as a domestic help in a few homes nearby.
Suresh suffered from a persistent cough and fever, and he believed that this was a normal occupational hazard for painters. A few months later, he was coughing out blood and was too weak to go to work. His wife admitted him to the local Government hospital where he was diagnosed with advanced tuberculosis and died a few days later.
His wife is now left fending for herself and her two daughters, for whom higher education could very well remain just a dream. Tuberculosis not only took away her husband, but has also left her family socially and economically shattered.
Tuberculosis in India
Tuberculosis (TB) is one of India’s greatest public health challenges with the country shouldering the highest burden of TB in the world. In 2011, out of the estimated global incidence of 9 million new TB cases, 2.3 million occurred in India. TB kills close to 300,000 men, women and children like Thimmaiah and Suresh each year.
This communicable disease that spreads through the air is one of the leading causes of death in India. What is startling is the fact that TB kills two people every three minutes and nearly 1000 each day in India. If left untreated, a person with active TB can infect 12-15 people every year.
The direct and indirect costs of TB in India are estimated to be $23.7 billion. Despite the awareness that is being created, TB patients continue to be highly stigmatized, often leading to discrimination both within the community and at the workplace.
The RNTCP response
The country’s response to this public health scourge has mainly been through the Revised National Tuberculosis Control Programme (RNTCP) launched by the Ministry of Health & Family Welfare in 1997. The strategy recommended by the Ministry is known as the Directly Observed Treatment Short Course (DOTS), as propounded by the World Health Organization.
DOTS as a strategy was successfully piloted from 1993-96 before being widely advocated and applied. Since the launch of the programme, much has been achieved and the global benchmark of 70 per cent case detection and 85 per cent cure rate of new smear cases has been reached.
There is also focus on Multi-Drug resistant TB (MDR-TB) through the DOTS-Plus services in 17 states and efforts are on to make these services available throughout the country. Treatment for 13.5 million patients has been initiated and nearly 2.4 million lives have been saved. Though its impact is yet to be visibly seen, the RNTCP has begun addressing the issue of geographically challenging areas and is attempting to reach out to difficult and hilly terrain.
Special attention is now being given to vulnerable communities including tribals. There has also been an unseen positive gain in the form of overall improved health systems and processes because of the RNTCP. Capacity of key resources has been augmented and basic laboratory services in Primary Health Centres (PHCs) have either been introduced or strengthened.
The RNTCP has also started to recognise the contribution and potential of the private and NGO sectors in the delivery of health services. The programme now involves more than 1900 NGOs, 10,000 private practitioners, 150 corporate hospitals and 282 medical colleges under a new initiative called the Public Private Mix (PPM).
Despite the large-scale prevalence of TB and its impact on the nation, India has hardly focused on adequate research into the diagnostics required to accurately identify the disease. The current methods use the 125-year-old microscopy method that is known to miss more than half the cases. Apart from this, the problem of misdiagnosis leading to incorrect treatment increases the risk of developing and transmitting drug-resistant TB, posing a real challenge.
Another problem is that not all patients requiring treatment access public health facilities where the RNTCP programme has ensured reasonable capacity building of its personnel and where SOPs exist for diagnosis and treatment. Many of them go to the private sector where lack of regulation has led to extensive abuse of inaccurate diagnostic tests.
Serological tests, which are not known to be of any use, are used extensively in the private sector for diagnosis of TB and it has been estimated that more than $15 million is spent on these tests. There is also the danger of irrational prescriptions from inadequately trained physicians in the private sector, who do not follow the WHO recommended DOTS strategies.
Unregulated sale of TB drugs over the counter adds to the complexity. The presence of nearly half a million MDR-TB cases around the world is another vexatious challenge. The emergence of HIV-TB co-infection is also turning out to a major issue. Nearly 5 per cent of the 2.4 million people living with HIV are known to be suffering from TB too.
Tuberculosis needs to be seen as a public health problem with severe socio-economic impact. The disease is known to have adversely affected thousands of families, such as Suresh’s. 70 per cent of TB patients are between the ages of 15 to 54 and it is most common among the poor and the marginalized.
The disease is also disproportionately common amongst young females, with more than 50 per cent of such cases in women occurring before 34 years of age.
The next steps
Though the government’s RNTCP programme is attempting to focus on universal access to diagnosis and treatment of superior quality for all TB patients, more needs to be done. By 2015, the programme hopes to ensure the early detection and treatment of at least 90 per cent of estimated TB cases in the community. It also aims to successfully treat at least 90 per cent of all new TB patients and at least 85 per cent of all previously treated TB patients.
All this cannot happen only because the government or public health agencies wish it to. We must realize that TB is not just a problem for the Ministry of Health but affects every Indian citizen and the nation’s progress. Each one of us, irrespective of whether we are in the health sector or whether we are public servants or private employees, needs to become a spokesperson of the RNTCP programme.
Citizens must also see themselves as partners and watchdogs of this programme. We need to collaborate and demand accountability of our health systems at the same time. As concerned citizens, we need to demand and support attempts to bring in regulation on diagnostics and anti-TB medications in India.
There also has to be stronger demand from citizens for enhanced budgetary support to the RNTCP programmes from both state and central governments. Physicians who understand the irrationality of serological diagnostic tests have the added responsibility of pressing for a ban on them across the nation.
We need to understand and appreciate that every one of us is a soldier fighting this scourge and we cannot let the battle be fought only by health personnel. It should be an obligation on all of us to take this fight forward, till we can proudly affirm that India has indeed brought the disease under control. Then and only then will the souls of people like Thimmiah and Suresh find lasting peace.
1. TB India 2011, RNTCP Status Report, 2011; Directorate General of Health Services, Ministry of Health & Family Welfare, Govt of India
2. TB India 2013, RNTCP Status Report, 2013; Directorate General of Health Services, Ministry of Health & Family Welfare, Govt of India
3. Tuberculosis, Factsheet No.104, Media Center, World Health Organization, 2013
4. FAQs, TBC India, Directorate General of Health Services, Ministry of Health & Family Welfare, Govt of India
5. Tuberculosis Diagnostics Xpert MTB/RIF test, World Health Organizations, WHO recommendations, 2013