I was a young 26-year-old when TB came into my life. Until then, life was filled with expectation and ambition. I was starting a career and hopeful of building my life as an independent woman in the workforce.
It was 2016, when I was diagnosed with Multidrug Resistant (MDR) tuberculosis (TB). Believe it or not, a classic case of misdiagnosis, I was initially declared allergic to fried food. It took close to 12 months to conclude my diagnosis. Until then I l knew little about TB.
Given my middle-class background, the costs of testing, diagnoses and medication began piling up. As the disease’s impact began unfolding I realised, TB affected us – me and my family – not just physically, but also economically. Thankfully, we were extremely lucky to have such a supportive network of people around us.
The Importance of Nutrition in TB Treatment
TB affects a large number of India’s poor due to social, economic and environmental factors; and hence is also termed as ‘a disease of the poor’.
But the truth of the matter is that its undernutrition which is the highest risk factor for TB in the country.
This is because it impacts the immunity level – the lower the immunity the higher the chances of contracting infectious diseases like TB. Poor nutrition among those infected with TB leads to wasting, poor recovery and often unsuccessful treatment outcomes.
Nutrition is not just critical for recovery but also to ensure that a recovered individual can go back to living a fully functional life.
The cost of providing this can also put an economic burden on individuals and families.
Combine this with growing urbanisation, poor living conditions, small rooms with numerous occupants and little ventilation, crowded trains and little access to reliable health services. What do we have ? A crisis in the making!
Where Does the Problem Lie?
So where do we start ? We can’t address everything together but surely sufficient nutrition can be one possible approach to address this crisis. The government of India’s recent announcement of Nikshay Poshan Yojana (NPY) allocating Rs 500 per month to each TB patient in the public sector to support their nutritional needs, is a welcome move. However, even before one can appreciate it, the shortcomings are glaring. First, Rs 500 is not enough.
Agree that it is a start, but is the amount enough to even buy two weeks’ ration? The government officers need go shopping – really!
Second, the awareness around this scheme continues to remain low. I mean, what good is a scheme if the ones who need it don’t know about it? Guesstimate pegs the order at barely 30 percent of the TB population.
Finally, the scheme was launched in early 2018 and there is no evaluation plan in place. There is no foresight in terms of how to maximise the usage of the scheme.
So in other words, how do we aim to provide the bare minimum standard of nutrition to our TB affected populations if we can’t engage, or inform them?
More importantly, how do we improve unless we evaluate and correct ourselves ?
What Steps Should be Taken?
India has to make concerted efforts to provide increased nutritional assistance along with diagnosing and treating TB amongst the economically vulnerable. From the patient perspective, a key way to address the issue is to ensure that all active TB individuals receive a periodic assessment of their nutritional status.
This needs to be dovetailed with appropriate counselling, starting at diagnosis and continuing throughout the treatment. If unable to afford appropriate nutrition, they should be provided with locally available nutrient-rich foods, to restore normal nutritional status.
Food assistance improves access and adherence to treatment and mitigates the financial and social consequences of TB.
The most important thing of course is awareness. Until people know of it, the scheme remains on paper. We need a multilingual, pan-India communication campaign to enhance awareness around the scheme especially for those who need it the most. You don’t need big starts or big TV commercials – you need to think local and more efficient. People are smarter than we give them credit for – the government needs to get its act together on TB communication.
Current awareness programs not just on this scheme but generally are often poorly designed and unimaginative. If we are to eliminate TB by 2025, we need to make TB a buzzword within our homes, schools and communities. We also need to ensure that every TB affected individual and family is at least able to avail this scheme to ensure-some level of food security.
We created this monster with our neglect, our lack of attention to fundamentals and our silence that feeds the stigma around TB. It’s time to change all that. TB affects us all – from those who live in villages and small towns to the shiny big cities we all aspire to live in. You can’t end TB if you don’t talk about it or you don’t feed people enough. It is time to think comprehensively and address the issues of TB and nutrition together. Everything else, from the patient perspective is insufficient and piecemeal.
(Keyuri Bhanushali is TB Champion and part of Survivors Against TB. She is a copywriter and an MDR TB Survivor. You can reach her at email@example.com.)