Fourteen years ago, Tongtong was diagnosed with MPS II, a rare disease also known as Hunter syndrome that affects many different parts of the body. His condition gradually deteriorated due to a lack of specific treatments, and in late 2019, he became wheelchair-bound, and then he was even unable to stand.
In Depth: Fixing the High Cost of Rare Disease Treatment in China
2022年01月21日 11:41
The heavy cost borne by the patients and their caregivers can be financially crippling and sway patients to put off treatment
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- The heavy cost of rare disease treatment in China, such as this drug for spinal muscular atrophy, can be financially crippling to patients and their caregivers. Photo: VCG
[财新双语通产品，是为有双语需求读者专门订制的优惠产品， 按此可享超值优惠订阅。]
版面编辑：喻竹杨洋
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