Tuberculosis (TB) cases globally in 2021 were set to increase for the first time in decades, according to a World Health Organization (WHO) report. India’s recent political focus on the disease Which kills more than 1200 Indians every day is welcome. Its focus on involving communities in this effort, though a vital necessity, remains weak and directionless.
India’s fervent drummer to end TB called mass movement. Whether this turns out to be an ironic pipe dream or a determined effort remains to be seen. Yet, a major missing aspect of this mass movement is the people themselves, especially those who have survived TB.
Here, examining the term “community engagement” is instructive. What is community engagement in TB? The fact is that the TB eradication program remains ignorant of this important aspect. This is not surprising as it is assigned to doctors who have no training, experience or understanding of the issue. Why blame them? Dealing with it, they struggle and eventually take the easiest route.
tokenism and erasure
Community participation in TB thus becomes not only symbolism but also an example of eradication. TB survivors are regularly trained as advocates. Who are they advocating? Who are they advocating? Nobody knows completely.
Instead of seeking advocacy and accountability, they are often tasked with educating other TB-affected individuals with a focus on completing treatment. Is it high risk? Perhaps. Is this not the job of health workers? Definitely. Does this constitute advocacy? Not necessary.
It is also instructive to note that those who are engaged are often poor, lack sufficient agency and are unemployed. They are engaged with minimal honorarium to provide support to the affected and often lack the agency to question this paradigm.
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There is a deep ethical problem with this approach to community engagement. These efforts are often supported by international agencies and nonprofits that choose to provide contractual minimum wages to TB survivors for engaging in high-risk work. The model promoted as a success would be unequal, racist and discriminatory anywhere in the developed world – but in low-income, high-burden countries it is called empowerment.
True community engagement and advocacy are casualties here. in the commotion of talk about Fascinating communities, we forget to ask what they really need. Certainly people affected by TB need more than just supportive instruction. They need economic and social support, information and stigma reduction. But these community advocates are unable to resolve these issues. Their training and limited role is to provide instruction and basic guidance to other vulnerable communities affected by TB. Forget advocacy, even if it is called patient assistance, it will be a low paying job. However, it is seen as a breakthrough in community mobilization, where TB survivors are a resource to be used, garnering accolades globally.
Ignoring the needs of the weak
However, in reality it is the institutionalization of low-quality, discriminatory care for the most vulnerable Indians. The government and international agencies are effectively making the narrative that people who are affected by TB and are poor deserve poor care, and that their role is limited to low-paid labor and not demanding accountability or rights. Has been
Such models are even more pernicious when we consider the long-term impact. When models are appreciated by agencies that otherwise speak of equality, it is an effective end to advocacy for improving the quality of care. Once adopted and institutionalised, these paradigms normalize substandard care in TB, undermining vulnerable people’s rights to access to high-quality care.
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It is ironic to call these survivors advocates. They are neither being asked what they need nor what they deserve. Instead, they are being given a ready-made script to appreciate such an approach and the institutions that support it. As a result, the focus on accountability has been lost. Instead, it washes out gaps in high-burden systems. When disease programs engage with communities the result is just the opposite.
If the program were to effectively engage survivors and those affected about their needs, a long laundry list would emerge. This list is not new and would include access to nutritional support; information programs; high-quality, accurate, free diagnostics; high quality drugs; ongoing mental health and patient support; and stigma reduction.
Instead, these community paradigms silence these demands by using community voices with support from partners to end TB, where no one is asking how we are going to end it.
it is the responsibility of the government
What is also disturbing is that the government is busy outsourcing its responsibilities. The government has launched a much publicized scheme for TB affected persons to be adopted by private citizens and corporations. The question remains, why should the government in a tax-paying country ask others to provide support and nutrition to those affected by TB? Then what is the role of the government? In the meantime, what if support for such a plan wanes? What about poor patients who seek care in the private sector? These questions remain unanswered.
Let’s also consider the quality of care. Why is the government reluctant to ask survivors and advocates that they need care? Why are these conversations extraneous? Already, about 50% of Indians seek TB care in the private sector; Yet no one asks how we can improve the quality of care in the public And private sectors.
The ethics of calling such erasure, disempowerment and outsourcing a ‘people’s movement’ are highly questionable. This will effectively reduce advocacy in the short run as well as in the long run. Fighting TB will be limited to sloganeering and cheering.
We will continue to distract each other while chasing elimination, which is a statistically impossible dream. India will continue to miss out on thousands of TB cases every year. These will go unreported, misdiagnosed and treated. The rising tide of drug-resistant TB will threaten consumption in urban centers due to poor housing, nutrition and poor quality of care. A new slogan will come out soon. Of course, we still wouldn’t be asking those affected what they needed.
, Chapal Mehra is a public health expert and director of the Relief Project,