SURGUJA, India — Poonam Gond is learning to describe her pain by numbers.
Zero means no pain and 10 is agony. Gond was at seven late last month. “I have never known zero pain,” she said, sitting in the plastic chair where she spends most of her days.
The 19-year-old has sickle cell disease, a genetic blood disorder. Her medicine ran out weeks ago.
Gond’s social worker, Geeta Aayam, nods as she bustles around Gond. She has the same disease — but, with better care, leads a very different life.
Hundreds of millions of rural Indians struggle to access care for a simple reason: The country just doesn’t have enough medical facilities.
India’s population has quadrupled since its independence in 1947, and an already fragile medical system has been stretched too thin: In the country’s vast countryside, health centers are rare, understaffed and sometimes run out of essential medicines. For hundreds of millions of people, basic health care means a daunting journey to a distant government-run hospital.
Such inequities aren’t unique to India, but the sheer scale of its population — it will soon overtake China, making it the world’s largest country — widens these gaps. Factors ranging from identity to income have cascading effects on health care, but distance is often how inequities manifest.
What that means for people with chronic problems like sickle cell disease is that small differences in luck can be life-changing.
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EDITOR’S NOTE: This story is part of an ongoing series exploring what it means for the 1.4 billion inhabitants of India to live in what is now the world’s most populated country.
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Gond’s sickle cell disease was diagnosed late, and she often doesn’t have access to medicine that keeps the illness under control and reduces her pain. Because of the pain, she can’t work, and that further reduces her access to care.
Like Gond, Aayam was born into an Indigenous farming family in central India’s Chhattisgarh state, but before her pain began she finished her studies and began working for the public health nonprofit Sangwari in the city. Older, educated and working alongside doctors, she was diagnosed promptly and received treatment. That allowed her to keep the disease under control, hold a job and get consistent care.
India’s rural health system has weakened from neglect in past decades, and as health workers gravitated towards better-paying jobs in big cities. India spent only 3.01% of its gross domestic product on health in…
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