SURGUYA – Poonam Gond learns to describe her pain with numbers.
Zero means no pain and 10 is agony. Gond was at seven late last month. “I’ve never known zero pain,” she said, sitting in the plastic chair she spends most of her day in.
The 19-year-old suffers from sickle cell anemia, a genetic blood disease. Her medicine had run out weeks ago.
Gond’s social worker Geeta Aayam nods while scurrying around Gond. She has the same illness – but with better care leads a very different life.
Hundreds of millions of rural Indians struggle to access medical care for one simple reason: the country simply does not have enough medical facilities.
India’s population has quadrupled since independence in 1947, and a already fragile medical system is too sparsely satiated: in the country’s vast rural areas, there are few health centers, they are understaffed and sometimes they run out of essential medicines. For hundreds of millions of people, basic medical care means a daunting journey to a distant government hospital.
Such injustices are not unique to India, but the sheer size of its population – it will soon overtake China and make it the country the largest country in the world – widens these gaps. Factors ranging from identity to income have cascading implications for health care, however distance This is how injustice often manifests itself.
For people with chronic issues like sickle cell disease, that means small differences in happiness can be life-changing.
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EDITORS’ NOTE: This story is part of an ongoing series exploring what it means for India’s 1.4 billion people to live in what is now the world’s most populous country.
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Gond’s sickle cell anemia was diagnosed late and she often does not have access to medication to control the disease and relieve her pain. The pain prevents her from working, further limiting her access to care.
Like Gond, Aayam was born into an indigenous farming family in the central Indian state of Chhattisgarh, but before her pain began, she finished her studies and began working for the town’s non-profit health agency, Sangwari. Older, educated and working alongside doctors, she was promptly diagnosed and treated. This allowed her to keep the disease under control, keep a job, and receive consistent treatment.
India’s rural health system has been weakened by neglect over the past few decades and by health workers turning to higher-paying jobs in big cities. According to the World Bank, India spent just 3.01% of its gross domestic product on health in 2019, less than China’s 5.3% and even neighboring Nepal’s 4.45%.
In Chhattisgarh, which is one of the poorest states in India and also has a significant indigenous population, there is about one doctor for every 16,000 inhabitants. For comparison: in the capital New Delhi, there is one doctor for every 300 inhabitants.
“Poor people receive poor health care,” said Yogesh Jain, a public health specialist at Sangwari, which promotes access to health care in rural India.
Gond, 19, saw her life go off track early on. Her mother died of sickle cell disease when she was 6 years old and the young woman left school at 14 to help around the house. She required frequent blood transfusions to control the disease, forcing her to make the arduous journey to the county hospital.
But as her pain got worse, she couldn’t even get out of bed. In 2021, she required surgery when bone tissue in her hip died due to lack of oxygen. She can no longer walk, sit or sleep without pain. Most days she pulls the plastic chair she spends hours in to the door and looks out as the world goes by.
Her former schoolmates are in college now and she wishes she were with them.
“All I feel is anger. It’s eating away at my insides,” she said.
Hydroxyurea, a pain-relieving drug that India approved in 2021 and is providing for free, is allowing many patients to lead relatively normal lives, but Gond’s medicine ran out weeks ago and the pharmacists in her village in Surguja district have none.
If Gond is given hydroxyurea for a few weeks, the pain will gradually subside and she will be able to move more. But it often comes to an end, and the sprawling borough has just one large state hospital for 3 million mostly rural residents. To get medicine from the hospital, Gond’s father would have to rent a motorcycle and miss a day’s work each month – a significant sacrifice for the family, who live on less than a dollar a day.
When things get really bad, Gond calls social worker Aayam, who is driving by with the drugs. But there are thousands of patients who don’t have access to health centers, and Aayam doesn’t often get to.
Sickle cell anemia is an inherited disorder in which deformed red blood cells are unable to properly transport oxygen around the body. It can cause severe pain and organ damage and is common in people whose families are from Africa, India, Latin America and parts of the Mediterranean.
In India, the disease is widely but mistakenly seen as just an affection Indigenous population. Like many diseases associated with marginalized communities, it has long been neglected. India approved hydroxyurea for sickle cell disease two decades after the US
The government’s current strategy is to eliminate the disease by 2047. The plan calls for screening 70 million at-risk people by 2025 for early detection of the disease, while also advising those who carry the gene about the risks of marriage. But from April it only has screened 2% of its 2023 target of 10 million people.
Experts warned that similar efforts had failed in the past. Instead, Jain, the public health specialist, advocated strengthening health systems so they can find, diagnose and treat the sick. When patients can’t come to the hospital, he asked, “Can the healthcare system go to the people?”
Some try. Bishwajay Kumar Singh, an Ambikapur hospital official, and Nandini Kanwar, a nurse at Sangwari, traveled three hours through forested hills to the village of Dumardih on the outskirts of Surguja district.
Raghubeer Nagesh, a farmer, had taken his son Sujeet, 13, to the hospital the day before. The boy was steadily losing weight, and one afternoon his leg felt like it was on fire. Tests confirmed he had sickle cell anemia. His concerned father told hospital officials that several other children in the village had similar symptoms.
In Dumaridh, Singh and Kanwar visited homes where people had symptoms, including one where a concerned mother asked if the disease was stunting her child’s growth and another where a young man who played music at weddings found that his pain wasn’t just fatigue.
Efforts like this are dwarfed by the sheer size of India’s population. Dumardih has a few thousand inhabitants, making it a tiny village by Indian standards. But the two can only visit four or five homes and test about a dozen people with symptoms in a single trip.
Singh and Kanwar were asked the same question over and over again: Is there really no cure? Faces twisted as painful calculations were made. An incurable disease means a lifetime of dependency on an unreliable healthcare system, personal expense, and sacrifice.
Kanwar said they are helping to make the medicines available locally, but taking them daily is essential.
“Then life can go on,” she says.
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