Written by Pritha Venkatachalam and Sudeshna Mukherjee
Everyone deserves the right to dignified healthcare, regardless of their physical, professional, and geographical circumstances. Yet, India’s health systems too often fail vulnerable and marginalised people, who face a variety of obstacles in accessing high-quality care. Think of the stigma that prevents sex workers from full access to health resources or the discrimination that LGBT individuals face. Or the dearth of geriatric care to meet the needs of the elderly, or the lack of accessible and quality care for Dalit, Bahujan, and Adivasi (DBA) communities.
The Covid-19 pandemic exposed how pervasive these inequities are — and the extent to which healthcare cannot be separated from the economic, social, and cultural circumstances in which it is provided. These inequities have existed all along, and the crisis has only deepened them.
We believe the health system in India needs to fully include everyone. To get there, discussions about healthcare need to go beyond addressing availability and affordability. Providing equitable, high-quality care to all requires recognising—and celebrating—differences among traditionally disenfranchised populations. The specific healthcare needs of these communities must be understood and addressed.
Leaders of organisations that work closely with disenfranchised groups point to several reasons why some communities are marginalised by the health system. Most prominently, vulnerable populations usually play little or no part in developing and delivering healthcare services. As a result, services may be geographically, culturally, or in other ways inaccessible, and not meet the unique needs of the community.
“Creating equitable health systems is, at its core, a design issue,” noted Dr Nirmala Nair, co-founder of the Jharkhand-based nonprofit Ekjut, which works with India’s tribal communities. “The voices of these populations are often not heard.” To combat this problem, Ekjut organises tribal community meetings at the onset of the programme to engage them from the planning stage. Ekjut also conducts outreach to ensure that the poorest among those it serves participate in these meetings.
Social stigma and discrimination also pose significant obstacles. Some patients feel judged by providers because of their socioeconomic status or profession. “This judgement deters health-seeking attitudes. There is a feeling of not being wanted,” said Priti Patkar, founder of Prerana Anti-Trafficking, which aims to end intergenerational prostitution and protect women and children from human trafficking. As a result, Patkar said, patients frequently forego care or turn to local, informal providers who lack requisite knowledge and training.
Another hurdle is that healthcare systems often take an overly narrow approach when working with marginalised communities. For example, according to Patkar, healthcare for sex workers has focused almost exclusively on the treatment and prevention of HIV and other sexually transmitted diseases, ignoring other pressing health needs.
Finally, some providers lose sight of the fact that everyone, regardless of their circumstances, has value to broader society. When they do, treatment practices suffer and patients become demoralised. “At the onset of disability, if the patient is told that there is no cure, to them, that means life is over, and it shouldn’t,” said Shanti Raghavan, founder of Enable India, an NGO that supports livelihoods for people across 14 types of disability. “Instead they need rehabilitation and solutions to regain their quality of life.”
Raghavan notes that when people with disabilities receive the timely support required to regain their functional abilities—including basic forms of assistance, such as crutches or wheelchairs—many can thrive personally and professionally, sometimes “earning four or five times the national average.”
Elevating communities’ voices can contribute to better care, and collaborative action is one way to do that. For instance, our organisations, The Bridgespan Group and Piramal Swasthya, have partnered with others like the Bill and Melinda Gates Foundation to design and implement Anamaya, a recently launched tribal health collaborative. Anamaya brings together government, philanthropy/donors, NGOs, academic research organisations, and other stakeholders to work for improved tribal health outcomes.
Investing in high-quality training and support for community healthcare is another avenue for change. “It is not difficult to map out the NGOs, the communities they are working with, and what their needs are,” said Dr Thelma Narayan, co-founder of the Society for Community Health Awareness Research. “We need to do this with a sense of urgency.”
Much is also gained by employing members of traditionally vulnerable communities within healthcare systems—and celebrating their differences. These workers draw on shared experiences to develop greater trust with patients and deliver more empathetic care. For example, the ASARA project of Piramal Swasthya in the Vishakhapatnam tribal belt has engaged auxiliary nurse midwives from tribal communities, who help transcend language and cultural barriers and incorporate their lived experiences into healthcare delivery. Where the community-led programme has been implemented, maternal deaths have fallen to zero.
Covid-19 has revealed the urgency of engaging these communities with more focus and empathy. Real action is needed to build inclusive health systems that enhance communities’ confidence to seek healthcare, and provide acceptable health services. “We don’t lack resources in India,” Narayan said. “If we don’t go ahead with this, we have only ourselves to blame.”
Pritha Venkatachalam is a partner and head of market impact, South Asia in The Bridgespan Group’s Mumbai office, and Sudeshna Mukherjee is vice president – behaviour change communication at Piramal Swasthya