SURGUJA, India (AP) — Poonam Gond is learning to describe her pain in numbers.
Zero means no pain and 10 is agony. Gond was seven at the end of last month. “I’ve never experienced any 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 disease. His meds ran out weeks ago.
Gond’s social worker, Geeta Aayam, nods as she fusses 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 healthcare for one simple reason: the country simply does not have enough medical facilities.
India’s population has quadrupled since independence in 1947, and an already fragile medical system has been overstretched: In the vast countryside of the country, health centers are few, understaffed and sometimes lack essential drugs. For hundreds of millions of people, basic health care means a daunting journey to a distant public hospital.
Such inequalities are not unique to India, but the sheer size of its population — it will soon overtake China, making it the largest country in the world. — exacerbates these gaps. Factors ranging from identity to income have cascading effects on health care, but distance is often how inequality manifests itself.
This means for people with chronic conditions like sickle cell disease that small differences in luck can change their lives.
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EDITOR’S 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 most populous country in the world.
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Gond’s sickle cell disease was diagnosed late and she often does not have access to medications that control the disease and ease her pain. Because of the pain, she cannot work, further reducing 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 school and started working for the organization. public health nonprofit Sangwari in the city. Older, educated and working alongside doctors, she was quickly diagnosed and received treatment. This allowed him to keep the disease under control, to hold a job and to obtain constant care.
India’s rural healthcare system has weakened due to neglect over the past few decades and as healthcare workers gravitated towards better-paying jobs in big cities. 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%, according to the World Bank.
In Chhattisgarh, which is among the poorest states in India and also has a large indigenous population, there is approximately one doctor for every 16,000 people. By comparison, the urban capital of New Delhi has one doctor for every 300 people.
“The poor get poor health care,” said Sangwari public health specialist Yogesh Jain, who promotes access to health care in rural India.
Gond, 19, saw his life derailed early. Her mother died of sickle cell disease when she was 6, and the young woman dropped out of school at 14 to help around the house. She needed frequent blood transfusions to manage the disease, forcing her to undertake the difficult journey to the district hospital.
But as her pain worsened, she couldn’t even get out of bed. In 2021, she had to have surgery when the bone tissue in her hip died, deprived of oxygen. She can no longer walk, sit or sleep without pain. Most of the time, she pulls the plastic chair where she spends hours to the door and watches the world go by.
Her former classmates are now in college and she would like to be with them.
“All I feel is anger. It eats me inside,” she said.
Hydroxyurea, a painkiller that India approved in 2021 and provides for free, is enabling many patients to lead relatively normal lives, but Gond’s drugs ran out weeks ago and pharmacists in her village in Surguja district have none.
When Gond takes hydroxyurea for a few weeks, the pain gradually decreases and she can move around more. But it often runs out, and the sprawling district has just one major public hospital for 3 million, mostly rural residents. To get medicine from the hospital, Gond’s father had to borrow a motorbike and skip a day of work each month – a significant sacrifice for the family, who live on less than a dollar a day.
When things go very badly, Gond calls Aayam, the social worker, who drives with drugs. But there are thousands of patients who don’t have access to health centers and Aayam can’t do that often.
Sickle cell disease is an inherited condition in which deformed red blood cells cannot properly transport oxygen throughout the body. It can cause severe pain and organ damage and is commonly found in people whose families came from Africa, India, Latin America and parts of the Mediterranean.
In India, the disease is widely, but wrongly, considered to affect only the indigenous population. Like many diseases associated with marginalized communities, it has long been neglected. India approved hydroxyurea for sickle cell disease two decades after US
The government’s current strategy is to eliminate the disease by 2047. The plan is to screen 70 million people at risk by 2025 to catch the disease early, while advising those who carry the gene about the risks of getting sick. marry. But in April, he only has projected 2% of its 2023 target of 10 million people.
Experts have warned that similar efforts have failed in the past. Instead, Jain, the public health specialist, argued for strengthening health systems so they can find, diagnose and treat the sick. If patients can’t get to the hospital, he asked, “can the health system get to the people?”
Some try. Bishwajay Kumar Singh, a hospital official from Ambikapur, and Nandini Kanwar, a nurse from Sangwari, trekked for three hours through forested hills to the village of Dumardih, on the outskirts of Surguja district.
Raghubeer Nagesh, a farmer, had taken his 13-year-old son Sujeet to hospital the day before. The boy was steadily losing weight, then one afternoon his leg felt like it was burning. Tests confirmed he had sickle cell disease. Her concerned father told hospital officials that several other children in the village were showing similar symptoms.
In Dumaridh, Singh and Kanwar visited homes where people were showing symptoms, including one where a worried mother asked if the disease would stunt her child’s growth and another where a young man who plays music at weddings asked. discovered that his pain was not just fatigue.
Efforts like this are dwarfed by the sheer size of India’s population. Dumardih has a population of a few thousand, making it a small village by Indian standards. But the two can only visit four or five homes in a single trip, testing a dozen people with symptoms.
Again and again, Singh and Kanwar were asked the same question: is there really no cure? Faces fell as painful calculations were made. A disease that cannot be cured means lifelong dependence on an unreliable healthcare system, personal expense and sacrifice.
Kanwar said they would help make the drugs available nearby, but it was essential to take them daily.
“So life can go on,” she said.
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The Associated Press Health and Science Department is supported by the Howard Hughes Medical Institute Science and Education Media Group. The AP is solely responsible for all content.