In this new coronavirus-affected world, hunger may be India’s next health crisis.
Not just Covid-19, diseases such as tuberculosis have also been driving people towards poverty and resulting in an economic crisis. About 2.8 million people get TB in India every year and thousands are pushed into debt and poverty.
Apart from getting the right treatment in time, TB patients also require economic security to ensure that they maintain a nutritious diet while getting the treatment. Economic security is also needed to ensure that the patients’ families can compensate for the loss of income. They also need support to boost their immunity and speed up their recovery.
How do schemes help communities at risk?
Let’s examine TB as a case study. The recent India TB Report 2020 shows that about Rs 462 crores were disbursed as direct benefit transfers for nutritional support to 24.04 lakh TB-affected individuals in 2019 who were enrolled under Nikshay Poshan Yojana scheme. This is indeed commendable because TB is caused by and creates poverty. But is this enough?
A deeper examination reveals that the scheme is well-intentioned but remains poorly conceptualised and executed. There are a few fundamental flaws in the scheme, as well as how the direct benefit transfers disbursements have been carried out.
Firstly, we do not fundamentally realise that to comprehensively address TB, we need to address the poverty of TB-affected persons and their families. The direct benefit transfer amount under the scheme is only a meagre Rs 500 per month.
One only needs a trip to the market for a simple price research exercise to show that Rs 500 is not enough to support the dietary requirements of someone who needs to consume 2,800 kcals a day, which is the National Tuberculosis Elimination Programme-recommended amount of calories a TB-affected individual must consume for fast recovery.
Now contrast this to India’s HIV response. Persons infected with HIV have similar schemes under which they get support from states and central government with much higher amounts. Why is this discrimination for supporting those infected with TB – a disease which lasts only for a few years at best?
Helping TB-infected individuals and families will improve adherence to treatment, patient well-being and reduce poverty and desperation. More importantly, while we consider HIV a lifelong illness, we forget that the impact of TB, too, continues even well after a person has recovered both on their health and their ability to earn.
The minuscule support of Rs 500 clearly shows that the planners of the scheme did not take into account that many patients may be facing a loss of livelihood and previously available support from family. Now imagine this situation of economic slowdown and panic amid coronavirus pandemic. Will Rs 500 be enough in such a situation? We know that during Covid-19, prices have risen, people have lost jobs and can’t go and bargain. Do we not need to increase the direct benefit transfer amount now? It is also critical to remember that for some TB-affected individuals, this may be the only financial support.
The scheme also has some systemic challenges. There have been several news reports about irregular disbursement of direct benefit transfer. Possibly a fear of leakage has led to long-term procedural delays. This is an aspect that needs to be looked into urgently, especially considering that now, more than ever, there is an extreme and pressing need for financial support to reach patients on time. Often, patients also complain that they are not properly briefed about the scheme, creating a trust deficit.
Patient and community education
In order to be able to ensure the maximum impact of such schemes, trust-building, more effective systems and procedures need to be put in place. For this, training of staff remains critical, as does the role of patient and community education. The need is to engage those affected as active participants in designing models of care, so as to make TB care more person-centred, accessible, effective and equitable.
A critical aspect of TB response is strategic communication, which is entirely missing. Those affected should know that they have access to these schemes, and the right to demand it. The local authorities need to advertise and engage with affected individuals on this scheme on an ongoing basis.
Schemes like Nikshay Poshan Yojana are not impactful because they do not keep affected individuals at the centre of their design, communication or implementation.
We treat such schemes as a stop-gap arrangement to address patient anguish, whereas, we need to make it into a broad mechanism for community support. With the pandemic rendering even disease-free people jobless and without social support, the national program must ensure that TB patients or communities at risk are not severely affected due to inadequacy of financial and nutritional support mechanisms in the lockdown.
Diptendu Bhattacharya is an MDR-TB survivor, educationist and Fellow associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related comorbidities.
Vashita Madan is a writer and works in public health and communications, also associated with SATB.