According to a story from the South China Morning Post, there are an estimated 20 million people in China that are rare disease patients. The Chinese government has 121 diseases that it considers rare, but unfortunately it has not done much to help support the rare disease patient community.
The amount of support that the government gives can vary widely depending on the disease. For hemarthrosis, a serious symptom of hemophilia in which blood enters joint spaces, the government will compensate that patient for 80 percent of the bill. However, for other indications, such as Niemann-Pick disease, there is no assistance for treatment, which can cost up to two million yuan per year.
Like in most places, life is not easy for rare disease patients in China. Take the story of Pan Longfei, who has Kallmann syndrome. His condition prevents his body from completing puberty. As a result, he is often mistaken for a woman and had difficulty opening a bank account because of his feminine features. Pan is currently 30 years old but was only diagnosed with Kallmann syndrome at age 23. Delays in diagnosis, misdiagnosis, or lack of treatment access are everyday challenges for Chinese rare disease patients.
However, there are nonprofit groups within the country that are working to bring greater awareness of rare diseases in Chinese society. One such group is the Illness Challenge Foundation. A report released by the organization, using data from over 2,000 rare patients, found that almost a quarter of them have never been treated because of excessive costs; about 60 percent had also been either misdiagnosed or had delayed diagnoses. These troubling figures highlight a lack of understanding about rare diseases even in the medical field.
The foundation recently put on a stage play called “Rare Hug” that starred 15 rare disease patients. The performance was first premiered in Bejing on February 28th (Rare Disease Day). The content of the play emphasizes the challenges that rare disease patients often face throughout their lives.
While the situation for rare patients in China is still very difficult, the work of the Illness Challenge Foundation and similar groups is hopefully an indication that the situation will begin to improve.