March 24 was World Tuberculosis Day. Not a day for celebrations in India if we consider that we have the highest TB burden globally with a million "missing" cases that remain undiagnosed, untreated and possibly undocumented. What's worse is that India's TB crisis -- the result of years of bureaucratic neglect and private sector disease mismanagement-- is now creating an epidemic of drug resistant (DR) TB with nearly a 100,000 DR TB cases. These are difficult to diagnose and treat, with less than 50% chance of recovery. World TB Day then, if anything, is a reminder of the crisis ahead.
India wasn't always the global problem of TB control. A decade ago, it was considered a leader and its TB programme cited as a successful example of infectious disease management. A combination of poor management, apathy towards the private sector and its patients and the continued resistance to addressing the problem of DR TB created what is nothing short of a public health crisis and an epidemic.
Of these, perhaps the most critical factor has been a continued apathy towards private sector patients. By some estimates close to 70% of all TB patients first seek care in India's vast, heterogeneous and unregulated private sector where there is extensive misuse of diagnostics and appropriate treatment is rarely available. From quacks, compounders to Ayush doctors -- anyone may treat TB without being checked or appropriately trained. Even if accurate diagnosis is available, appropriate treatment is rarely assured.
"The government's inability to view TB in a broader public health framework and its failure to effectively engage the private sector as a partner in controlling TB continues to cost India thousands of lives."
Despite widespread knowledge of this, the government over the last few decades did little to curb or change these practices. Ethically, this is the equivalent of deliberate negligence. Unfortunately, the government's inability to view TB in a broader public health framework and its failure to effectively engage the private sector as a partner in controlling TB continues to cost India thousands of lives.
A decade of neglect has now resulted in an epidemic of multidrug-resistant TB (MDR TB) with close to 100,000 cases. A single case of MDR-TB can infect another 10-20 cases a year unless the patient is started promptly on effective treatment. In many of India's urban centres the MDR-TB case burden is significant with some strains resistant to all available drugs as was reported in Mumbai in 2012.
Yet there seem to be no alarm in the government. Despite its extensive human costs, TB gets little or no political attention. Most politicians continued to remain uninformed about the epidemic and its magnitude. This continued apathy has led to budget cuts in a tuberculosis control programme that needs more resources and personnel - it is often barely able to pay its workers on time.
Meanwhile, India's poorest and most vulnerable have few options -- if they go to the public health system they are faced with endless waiting, mistreatment, poor diagnostics and frequent drug stock outs. In the private sector, there is poor quality of care and the cost of diagnosing and treating TB is prohibitive, pushing families into debt and poverty. In the end, many give up and disappear becoming one of the missing million in India.
"A decade of neglect has now resulted in an epidemic of multidrug-resistant TB (MDR TB) with close to 100,000 cases. A single case of MDR-TB can infect another 10-20 cases a year unless the patient is started promptly on effective treatment."
A recent open letter put together by some experts and endorsed by leading citizens (including Aamir Khan, Adi Godrej, Aruna Roy and MS Swaminathan among others) puts together some suggestions on TB management to the Prime Minister's office. These could be useful in determining how we need to address TB in India. These recommendations are available here.
If India wants to address its TB epidemic it must begin by looking at these recommendations and finding and treating these missing million patients. It essential India begin by providing free and accurate diagnosis to every single patient whether in the public or the private sector. The government also needs to provide all TB patients with an upfront Drug Susceptibility Test, to rapidly identify MDR and more severe forms of DR-TB. Instead of giving a standardised regimen we need to individualise treatment regimens, choosing only drugs to which we know the TB bacteria to be sensitive to. The government must also consider introducing, under controlled conditions, new drugs that have the potential for curing the most resistant TB strains.
Simultaneously, we must recognise that we have failed on issues of prevention, community engagement and empowerment. This can be remedied through comprehensive multi-media campaigns to ensure awareness of TB, community engagement and empowerment programmes to help fight stigma.
Most critically, the government must give up its ambivalence and actively and effectively engage the private sector. That is where India's real crisis of TB exists. TB in India will never be controlled without participation from the private sector. We must learn from experiments currently underway in India where local city governments have transformed how TB is diagnosed and treated ,addressing the crisis upfront.
Finally, the programme must recognise the economic and social dimensions of TB. TB often afflicts those between the ages of 15-44 leading to poverty and a loss in income. The government needs to provide nutrition supplements for all TB patients with low body weight and those below the poverty line. It should also create economic support programmes for TB patients and their families during the treatment period, to avoid further impoverishment.
Yet none of this will be possible until sufficient political attention and resources are combined with innovative thinking and deep focus on the patient to address this imminent crisis. Until then, TB will continue to remains India's silent killer and the missing million will remain missing.