China's Rare Disease Patients Face High Medical Costs, Study Finds Gaps in Coverage

A new study looks at how China protects people with rare diseases from huge medical bills. The country wants a strong healthcare system by 2030, but patients still struggle with costs.

Researchers used surveys and interviews to check three main ways people get help: government programs, private insurance, and charities. They talked to 720 patients through disease groups and support networks. Then they did 14 interviews with experts.

The findings show all three systems fall short. Patients still pay too much out of pocket. Each system has weak spots. Government plans don't cover enough. Private insurers make it hard to join. Charities lack steady funding.

Two big problems stood out. First, none of the three systems work well alone. Second, they don't work together. No clear rules say who pays what. This leaves patients stuck in the middle.

The study suggests fixes at two levels. Each system needs upgrades. Governments should cover more people and reduce regional gaps. Insurers should make plans easier to buy and manage risks better. Charities should raise more money and team up with others.

Cross-system teamwork is key. Clear rules must define who handles which costs. Better data sharing can help. A unified approach could ease the financial pain for rare disease patients across China.