It is no secret that India has the highest burden of those infected with tuberculosis in the world – with a total of 13,50,442 registered patients rom across the country.
Launched on 9 September, Ni-kshay Mitra is a crowd-sourced programme that allows organisations and individuals to 'adopt' TB patients, and support them directly with nutrition supplies, and vocational training.
On paper, it sounds like a great way to "increase the involvement of society in the fight against TB."
However, can the scheme help propel the National Tuberculosis Elimination Programme (NTEP), by bringing India closer to its goal of eliminating the disease by 2025 – which let's be honest, seems a bleak possibility now?
Can this scheme make a real difference in our fight against TB? Let's take a closer look at the scheme to find out.
Not the First Ni-kshay Scheme: What Past Examples Tell Us
The Ni-kshay Mitra scheme is in its preliminary stages, and it's too early to make a judgement on its success, say experts. However, considering past Ni-kshay schemes have served more misses than hits, activists and policymakers are sceptical of the operational strategy for this programme, they tell FIT.
To understand why, let's rewind to a few years ago.
In 2018, the government launched a scheme called the Ni-kshay Poshan Yojana under the same NTEP.
This scheme allowed a nutrition allowance of Rs 500 for all notified TB patients in the country.
"We lobbied for years for such a scheme," says Dr Raghavan Gopakumar, National Coordinator, Touched by TB, a national coalition of TB survivors in India.
Why? Because, "TB medication is a bit heavy," he explains.
If patients don't get enough nutritious food along with the medicines, it can lead to vomiting, sickness, and rapid weight loss, especially in those who have more severe illnesses.
"We work with TB patients in the ground level, and we can see that TB patients on the ground are under-nourished."Dr Raghavan Gopakumar, National Coordinator, Touched by TB
Although the scheme was put in place four years ago, its implementation is still clunky.
Many have complained of the allowance not coming on time, sometimes having to go 7 months without being given the aid. Sometimes they get less than promised, and other times it just does not reach them.
“If a patient who is undergoing treatment isn't getting his Rs 500 that he’s supposed to get every month, how can I expect you to implement such a big programme?" a doctor, who does not want to be named, told FIT.
'Let's Fix Shortfalls in Current Schemes First'
Experts FIT spoke to argue that it would make more sense to fix the shortfalls in the existing schemes before attempting an even more ambitious project.
Even if these logistic issues were to be ironed out, Rs 500 per month just doesn't cut it, says Dr Gopakumar.
“We have found that one TB patient would need at least Rs 3,000 per month to meet their nutritional needs. We requested the government to increase the allowance but there has been no response."Dr Raghavan Gopakumar, National Coordinator, Touched by TB
Khasim Sayyad, Programme Manager, TB Alert India, says this new programme has the potential to help close this gap, as it allows an additional source of nutrition for TB patients. However, he also emphasises the need to clearly outline a viable operational strategy to effectively make that happen.
"The mechanism of how it will be implemented is still not clear," he adds.
Finding Donors Is Hard, but Sustaining Them Is Harder
Government officials at state and district levels have been tasked with getting donors to sign up, a doctor told FIT, on the condition of anonymity.
A letter issued by the Central TB Division indicates that there is an emphasis on leveraging CSR opportunities and support from large corporations, perhaps because they can shoulder the care of a larger number of patients than individual donors.
This has, unsurprisingly, been hard to manage.
"People are trying to reach out to corporates, CSR initiatives and trying to get them to adopt TB patients because there is a high level pressure. Even at a state level they are struggling because it's very difficult to mobilise donors and bring everyone on the same page."A doctor, on the condition of anonymity, told FIT
So far, in Delhi, 130 donors (including Corporate Social Responsibility branches of big companies) have adopted 1000 patients, an official who is involved in the implementation of the scheme, tells FIT. This in a state with over 40,000 registered TB patients and counting.
"There are a few industries across India who have agreed to adopt around 1 lakh patients. This is also a small number because every year we are registering around 20 to 30 lac patients," the official added.
There is also the question of how sustainable this programme will be considering CSRs of corporations and industries that were pushed to sign up now may choose to pull out after the stipulated period of 6 months or 1 year.
This can lead to a dip in donors while the number of patients in need of support continue to grow.
'It's a Good Idea, but...'
...a scheme is only as good as its implementation.
“If something is being done for a beneficiary, it should reach the beneficiary directly," says Khasim.
If we want to make sure that this new programme doesn't get tangled in its operational shortfalls like the Nikshay Poshan Yojana did, and is able to make tangible difference on the ground, "we also need a clear-cut implementation plan," says Dr Gopakumar.
Some more major concerns that need to addressed are:
Patients can't choose what support they receive
In the initial round of consent gathering, Khasim says, patients were asked if they would like to receive support as part of the scheme, but "the patient won’t know that type of support they will get."
This is because, "at the time, we did not even know who the donors were or what kind of support they would choose to give," he adds.
Since than, an update has been made to the scheme which makes certain amount of nutritional support mandatory for all donors.
What if there aren't enough donors in the area?
Because the programme connects donors to patients in the local area they choose to support, there can be discrepancy in the number of donors that sign up in different areas.
For instance, cities like Delhi and Mumbai are likely to have a higher concentration of donors than small towns and villages.
Is there a mechanism in place to ensure a more equitable distribution of donors?
Who will manage the logistics?
"We don’t know what mechanisms and logistics would be followed when the programme is put in motion," the official, who is involved with implementation, told FIT.
How will the donor get the food baskets, the vocational training to the patients on the ground? Who will be accountable for managing these logistics?
How will they ensure the patients get the promised support?
If the scheme connects donors to patients, will the government officials be involved in ensuring the resources are reaching the patients in a timely manner?
Whether they have a strategy to tackle these operational concerns, “we don’t have any clarity yet,” says Khasim.
Dr Gopakumar agrees, adding, "It (Nikshaya Mitra) can help given that TB is a poor person’s disease and how far away we are from the target of eliminating TB by 2025, we need these kinds of programmes, but we also need a clear-cut implementation plan for it to work."