The government's current strategy is to eliminate the disease by 2047. The plan is to screen 70 million at-risk people by 2025 to detect the disease early, while counseling those who carry the gene about the risks of marrying each other. But as of April it has only screened 2% of its 2023 target of 10 million people.
Experts 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 to go the people?"
Some are trying. Bishwajay Kumar Singh, an official at the Ambikapur hospital, and Nandini Kanwar, a nurse with Sangwari, traveled three hours through forested hills to Dumardih village at the edge of the Surguja district.
Raghubeer Nagesh, a farmer, had brought his son Sujeet, 13, to the hospital the day before. The boy was losing weight steadily, and then one afternoon his leg felt like it was burning. Tests confirmed that he had sickle cell disease. His worried father told hospital officials that several other children in the village had similar symptoms.
In Dumaridh, Singh and Kanwar visited houses where people had 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 found out that his pain wasn't just fatigue.
Efforts like this are dwarfed by the sheer scale of India's population. Dumardih has a few thousand residents, making it a tiny village by Indian standards. But the two can only visit four or five homes in a single trip, testing about 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 can't be cured means a lifelong reliance on an unreliable health system, personal expenses and sacrifices.
Kanwar said they would help make the medicines available nearby, but taking it daily was essential.
"Then, life can go on," she said.