I have lived all my life in Delhi. Like any big city, it offers much of what is considered essential for a good quality of life: decent jobs, reputed educational institutions, a relatively high standard of living, and most importantly, some of the best healthcare in the country.
At least, that’s what I believed.
Then came my first day of internship in the emergency ward of one of Delhi’s busiest government hospitals, and that belief was shattered. I saw, firsthand, how healthcare in the city, like in much of India, remains a privilege for some and a distant dream for many: for those whose names and faces we rarely notice, who share our city but live in an entirely different reality, who are just as much a part of this country as you and I.
About eight years ago, I decided to leave Delhi, driven by a desire to help make healthcare truly accessible, especially for those pushed to the margins. Today, I work with a not-for-profit called Sangwari – People’s Association for Equity and Health. We founded Sangwari five years ago, united by a shared belief: access to quality healthcare is a fundamental right.
Sangwari – People’s Association for Equity and Health
We work in rural northern Chhattisgarh, a region often overlooked, yet home to people whose resilience leaves us humbled.
One of our core efforts has been to run community-based primary health clinics close to the most marginalised communities. These clinics are modest: a few rooms for consultation, a pharmacy, and a lab. There is only one non-negotiable principle: treat every person with respect and uphold their dignity.
These clinics offer doctor consultations, nurse-led care with a strong emphasis on health education, lab and pharmacy services. We also support social prescribing - helping people access entitlements such as Ayushman Bharat, ration cards, pensions, shram card benefits, and much more. Patients with tuberculosis (TB) receive additional nutritional support.
Beyond clinics, our network of community health workers across 48 villages plays a vital role. They provide preventive and curative health care that is accessible and acceptable to the people they serve. We also provide nurse-led palliative and pain care through home visits. Alongside direct services, we work closely with the public health system to improve care quality and make it more inclusive.
We are full-time problem-solvers and part-time clinicians. The work is usually heavy, psychologically more than physically. There are days of deep sadness, helplessness, and fatigue. But just when it gets overwhelming, a story comes along, one that reminds us why we do what we do.
Jinagi—Reclaiming life from sickle cell pain
This is the story of a 17-year-old girl. Let’s call her ‘Jinagi’ (Chhattisgarhi word for ‘life’ - Zindagi). She came to us limping. Her pain carved into her face. She had been diagnosed with sickle cell disease and at the time of presentation, was in intense pain. After a brief history, we gave initial analgesics, which offered partial relief. As the pain eased, her story poured out.
She had been unwell for over eight years with frequent fatigue, annual blood transfusions, and episodes of excruciating pain that began in her legs and hips and gradually spread to her entire body. Over time, the pain became constant. “Pain never leaves me,” she repeated. It had taken over her life, her sleep, her confidence, her ability to walk, bathe, cook, even use the toilet. She dropped out of school. She had stopped hoping.
She lost her mother, also to sickle cell disease, when she was very young. Her father and younger brother were her only family. They had already sold a part of their only asset, their agricultural land, to pay for her care. Tragically, although she had received bilateral hip replacements, she had never been put on standard treatment for sickle cell disease or received decent pain management.
Through Sangwari, we enrolled her in our programme. She was given a sickle cell identity card, started on a medicine called hydroxyurea, and managed with regular pain medications and adjuvants. We used a pain diary to monitor her symptoms and adjusted treatment accordingly.
Over the next two years, her pain reduced. Slowly, she began to understand her illness and how her body responded to the medication. She religiously took her medications. The need for blood transfusions dropped. She received regular follow-ups, physiotherapy, home visits, psychosocial support, and education about her disease. Her mobility improved. She completed school through the open schooling system. Our team helped her access a disability certificate, pension, and Ayushman Bharat benefits.
Today, she cycles 15 to 20 kilometres to meet us, pain-free and confident. She crochets, sews, and recently got a new smartphone. She sent me the first ‘selfie’ we took together on that phone - a picture that I will cherish for a lifetime.
Unnati—How respect helped cure more than TB
The story of Unnati, a young woman whose journey speaks volumes about the intersections of gender, caste, poverty, and health.
“She’s 24 years old and weighs 24 kilos,” said Dhanwantari, our nurse, looking concerned. She and Chetanya, our doctor, had cared for hundreds with TB in Surguja, but this one felt different.
Unnati arrived with her parents. She had been married for three years but was sent back by her husband’s family as she was unable to work in the fields, bear children, or manage household chores due to her illness. She had developed a chronic cough and weight loss for nearly two years. “This is our destiny,” her father, Rajaram Majhwar, a landless agricultural labourer, like many from his community, said quietly.
The Majhwars are a tribal group among the many Adivasi communities constitutionally grouped under 'Scheduled Tribes'. While larger communities like the Oraon, Kanwar, or Gond have had some access to constitutional rights, smaller communities like the Majhwars remain electorally insignificant and thus largely invisible - the marginalised among the marginalised.
Unnati’s mother, Parbatiya, had heard about our clinic through one of our community health workers. She made the journey for her daughter and for dignity.
“People said they treat you with respect here,” she told Dhanwantari.
In a world where humiliation in big hospitals is common and the ability to pay is limited, respect becomes the currency of trust. Respect is also a highly cherished value among Adivasis.
Unnati could barely speak. Her BMI was 12 (normal is more than 18), a medical red flag for life-threatening undernutrition. She had severe tuberculosis of the lungs and genitalia, explaining her inability to conceive. We began treatment. But that was just the beginning of a long journey with Unnati and her family.
At Sangwari, we try to walk with people with TB and their families for the next steps as they begin a six-month journey of taking anti-tuberculosis medicines. This is a process of listening and learning from the marginalized as we attempt to medically cure them by killing the bacteria Mycobacterium tuberculosis, one of the oldest and largest killers of humankind.
Our learning happens through understanding how socio-economic inequity affects them, how they understand and address their challenges, and how we can be their trusted ally.
We do this by home visits to families who have a member afflicted with TB, one-to-one discussions with people with TB and their family members during these visits. Very often, we see our staff turn into advocates for them and their issues, problem-solvers for their immediate concerns, and most importantly, witnesses to their struggles. Unnati’s journey was one such experience for everyone, including me.
She started talking and sharing about her life so far. She studied till 8th class, after which studies meant going several kilometres away from her village to the block headquarters. Something she or her family could not afford socially or economically. Most children from her community and almost all girls had this ceiling of 8th class decided almost before their birth.
Parbatiya was happy. “At least she went to school and was not married away like me at 14,” she said with a twinkle in her eyes, once in the clinic when we started chatting.
Unnati had many friends in her village and from her school, all of whom had the same trajectory as hers - married by the age of 20. She was not in touch with any of them and thus felt lonely after coming back from her husband’s place. She shared that her husband was also her age and had little say in family matters, which were decided by her father-in-law.
Today was the last day of her medications, and she had come for a final clinical check-up and tests. She was dressed in a pink and purple sari. I had a hard time recognising her. She was wearing make-up beneath her face mask (something she started using on her first visit when she got to know how TB spreads). She had gained 10 kgs in body weight and probably much more in her zest for life. She talked to all our staff. “I am getting regular periods now,” she told Dhanwantari. This was a first for her after several years.
I watched Chetanya show her both the X-ray films, before and at the end of treatment. “Where are all the white spots?” asked Unnati jokingly.
I noticed her wearing sindoor (traditional red vermilion, usually worn by married Hindu women) and asked if the husband was back or if she was going back, my biases getting the better of me.
“Naah, never,” she smiled as she turned away.
Compassionate care: not charity but a right
In Jinagi’s recovery and Unnati’s confident smile, we glimpse what happens when medicine is paired with dignity: healing becomes transformation, and patients become authors of their own futures. Their stories echo far beyond rural Chhattisgarh. They remind us that true healthcare equity demands more than hospitals and drugs. It asks for systems rooted in respect, allies who listen, and the courage to stand with those who are being systematically pushed to the margins.
Until that vision is commonplace, Sangwari and many like us will keep walking beside the Jinagis and Unnatis of the world, proving one life at a time that compassionate care is not charity, it is a right.
Edited by Parth Sharma
Image by Gayatri
