Medical and insurance systems failing Chinese families battling illness
It took a year to get a diagnosis for toddler Sun Mohang - and his blood condition is so rare that there is little in the way of financial or medical support
Sun Mohang's illness is a double tragedy. The Henan toddler is afflicted with a blood disorder that requires fortnightly chemotherapy, but the condition is so rare that it falls through the cracks of the medical research and insurance systems, putting a huge burden on his mother Wang Tao and their family.
Mohang has langerhans cell histiocytosis (LCH), one of more than 6,000 known rare diseases, most of which affect the nerve, endocrine and blood systems. The definition of a rare disease varies from country to country. In the United States, they are defined as those affecting fewer than 200,000 people in the country. The European Commission says a rare disease is a "life-threatening or chronically debilitating disease - mostly inherited" that affects fewer than 1 in 2,000 people. The proportion in Japan is 1 in 2,500 people.
Mohang's condition was diagnosed just over a year ago by doctors at Shanghai's Xinhua Hospital, one of the city's major paediatric health centres. But that was only after his family had spent a year asking doctors in their hometown of Nanyang what was wrong with him. Even with a name for it, doctors in Nanyang still did not know what the condition was.
Wang and her 34-month-old son moved to Shanghai last year in the hope of a cure. So far, the bill for diagnosis and treatment has reached nearly 200,000 yuan (HK$252,700), of which just 4,800 yuan has been reimbursed by the rural medical insurance scheme.
It has driven the family to the wall. In a rented, rundown 6sqm flat near the hospital, Wang said she had had almost no support from the government and received nothing from charities. "My son's treatment and rehabilitation takes money. But we've already borrowed from our relatives, and my husband, the sole breadwinner, earns around 2,000 yuan a month as a construction worker in Henan," she said.
The treatment has also taken a toll on Mohang, who has lost all of his hair, has a swollen belly and has a yellow pallor due to the damage to his liver.
It's not unusual for illness to trap families in poverty, but patients like Mohang with rare conditions must fight harder for effective care due to the lack of research interest in their diseases.