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Community Health Workers Battling At The Frontlines Of TB Are The Real Superheroes

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By Biraj Swain

Some statistics first: In case of healthcare, the human resources in health challenge have reached crisis levels pan India. In a re-analysis of District Level Health Survey (DLHS-4) data done by IndiaSpend , they found, health facilities are fewer than required – which means that the actual shortfall in personnel is much higher.

Their other findings were:

  1. In 30% of India’s districts, sub-centres with Auxiliary Nurse Midwives serve double the patients they are meant to.
  2.  As many as 65% of hospitals serve more patients than government norms mandate; the number rises to 95% if we include hospitals with a gynaecologist on staff.
  3. Almost 80% of all public hospitals serve twice the number of patients that government standards specify.

Add to it, the additional challenge of inadequate training of the community health workers. In a study in Northern Bihar, IndiaSpend reported, most ASHAs (frontline workers under the National Health Mission) never got a training, for the few who did receive, it was less than a week’s training out of the mandated 23 days! In case of TB, the largest killer in the world, the health workers, their skills and numbers, can determine if the battle against TB is to be lost or won forever.

Dr Jennifer Furin, the woman credited for getting Bedaquiline and Delaminid to South Africa and curing Goodman, a pre-Extremely Drug Resistant TB (tuberculosis) patient says with exasperation, “But TB is the only disease that I know where key treatment principles are based on fundamental mistrust between the persons suffering from the disease and those providing service to them. This is seen in DOTs, mandatory hospitalisation and rationing of
medicines like Bedaquiline.” The film ‘Two Countries, Two Choices’ is replete with the case studies of TB patients, their hopelessness and their struggles, and hopes of their care-givers and health workers – especially the health workers.

Dr Zarir Udwadia talks about Salma, the first reported case of Totally Drug Resistant TB (resistant to all the 16 prescribed drugs then) and her journey for cure and her ultimate death. One can only imagine her state of being while she travelled across states in India and across time in search of cure and her everyday despair.

Amir Khan’s Satyamev Jayate episode on TB discusses multiple cases of TB patients battling depression, toxicity and suicidal tendencies. That they had to battle everyday discrimination and stigma, it was just a package deal! The common strand across all the above narratives is the extreme despair of TB patients, the debilitating side-effects in case of Multi Drug Resistant (MDR) TB patients and the suicidal bouts they battle as they struggle to keep up with the treatment regime and its toxic side-effects.

Which is why the World Health Organisation (WHO) mandated counselling as an integral part of TB treatment regime. Other than drugs and diagnostics, the WHO recognized the pivotal role of counselling, which stood between TB and cure. Because the TB treatment regime is so tough, non-adherence can aggravate a perfectly curable TB into
MDR TB and make treatment adherence even more challenging as the infection spreads.

This requires a dedicated cadre of health workers who can screen, identify, counsel the patients, their families and hand-hold the patients as they recover. While the Government of India’s Revised National TB Control Programme has a frontline cadre, the TB Health Visitor (TBHV), they are over-burdened with paper work and administrative functions, which makes getting out to the most vulnerable population, screening and identifying them, initiating treatment and supporting them till cure, so much more challenging.

A study done by Karnataka Health Promotion Trust (KHPT), a leading non-profit in the health and social development space in Asia and Africa, has found that almost 40% TB patients never got a repeat home visit from the TBHV. Enter the Community Health Worker (CHW), a support cadre KHPT has introduced in Karnataka, Telengana and Andhra Pradesh as part of its partnership with the respective state governments under the project THALI (TB Health Action Learning Initiative).

This cadre of CHW becomes doubly important because the treatment approach to TB is also changing from germ theory to patient-centered, family-focused approach . This makes CHWs indispensable. And they complement the RNTCP staff. They ensure last mile connectivity and catching the ones most vulnerable to drop out.

What Do CHWs Do?

They identify and visit vulnerable populations (in slums, crowded conditions, engaged in hazardous occupations like mining and garments’ sector and risk- prone manufacturing) and their neighbours, screen them for TB, support their diagnosis, treatment initiation and periodic follow-ups, support and monitoring so the patients adhere to the treatment regime, take the prescribed drugs. They hand-hold them till the patients are cured or complete their treatment.

They thus, ensure the continuum of care. And if there are unfortunate cases of relapse or re-infection, they give hope and start the process all over again, shares Dr Ravi Prakash of KHPT. TB is the ultimate social disease. Poverty, unhygienic habitations, under-nutrition, crowded conditions, tobacco addiction, co-morbidities like HIV and diabetes, hazardous occupations like rag picking, mining make the perfect cocktail for TB. And it spreads fast as the Indian urban landscape is over-crowded and living cheek by jowl.

The CHWs spread awareness amongst citizens and patients and at-risk population on the entitlements for TB patients, the places to access those entitlements from and how and why they need to screen in time because everyone is vulnerable around a TB patient who is yet to be treated and more vulnerable around an MDR TB patient, even after the treatment has begun.

They also build rapport with the community leaders, opinion makers, key service providers to make combating TB a shared agenda for the entire community. They bust myths about the disease, dispel fears and instill hope. They also support building of community structures like patient support groups, peer groups of care-givers and are the essential link between the patient and the treatment. They work with existing community structures like the self-help
groups, youth and mothers’ groups, faith-based groups etc too, to make everyone an advocate in the fight against TB. In short, they promote health-seeking behavior amongst the TB patients, their families and neighborhoods!

So, how do they do this?

KHPT undertakes an intensive process for identification of the CHWs’ cadre (with requisite education and empathetic attitude), takes them through an intensive boot-camp training, also trains them on their own safety before deploying them. Train, mentor, learn… train… repeat – is the motto! Supporting the CHWs by being available
to them and their queries, so they can stay protected and support the TB patients is our mantra, emphasizes Dr Prakash Kudur of KHPT. To put that in perspective, ASHAs barely got 28% of the mandated training, as we discussed above.

How effective is this approach and this focus of recognizing and prioritizing the CHW in TB treatment?

The numbers speak for themselves: India contributes 27 per cent of the global TB burden, according to WHO’s Global TB Report 2017 . The country recorded 423,000 TB deaths of a total 1.67 million globally last year. In cases of MDR TB, the toll was 147,000, among 601,000 worldwide. In HIV-TB co-morbidity cases, the global toll in 2017
was 10.3 lakhs whereas Indian death toll was 87,000. The country had 2.79 million of the world’s 10.04 million people afflicted by TB.

That, Indian infection and death toll from TB are disproportionately higher than the global averages, except for the TB-HIV co-infection patients, holds the secret to winning against TB. The HIV-TB cases are 14 per 100,000
globally while in case of India, it is 6.6 per 100,000. In case of HIV-TB deaths, the global average is 5 per 100,000 while in case of India it is 0.9 per 100,000. KHPT with its historical work in HIV and its focus on health workers across all its interventions, has contributed to those better-than-world-average numbers in case of HIV-TB cases.

Especially since HIV programme itself came with a strong focus of community health workers. No wonder, some
of the most vulnerable people with double burden of HIV and TB actually show some of the best survival rates!

Going back to Dr Furin’s comments, CHWs in the THALI initiative are constantly building trust, addressing patient’s concerns and queries, winning their trust and the support of their families, and changing attitudes of whole neighborhoods. They are building trust between the patient and the service provider. This author has witnessed the camaraderie between CHWs and patients’, the trust and the bond across many in Cox Town, Sultanpalya, KR Puram etc.

The CHWs de-stigmatize the disease and humanize the patient. They are modern day super-heroes, super-heroes without capes! And KHPT is making CHWs integral to TB treatment, and our lives and times. And this author cannot emphasize this enough, that these skills of care and counselling that TB CHWs have acquired, are not just relevant for TB but for every disease and an ecosystem of well-being. One hopes the state will take advantage of this skilled cadre, which is the legacy of KHPT’s TB intervention, much beyond the life of its project intervention.

As leading macro-economist and public intellectual Prof Jayati Ghosh states, Indian health and nutrition is being delivered on the shoulders of army of frontline cadre who are primarily women… add the TB CHWs to that cadre!!!

About the author:
Biraj Swain is a senior international development expert and media critic and ethicist. She works on governance, social development and human rights in South Asia, East Africa and the UN. She can be reached at: biraj_swain@hotmail.com

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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