China has launched a program aiming at helping patients with rare disease in diagnosis and treatment and offering financial support to those in need.
"The cost of treatment and care throws a lot of families into poverty. But what is more desperate yet, is that people often simply don't know what took their loved one's life," said Wang Yiou, head of the Illness Challenge Foundation, who lives with brittle-bone disease.
The program, which was launched Wednesday, will be sponsored by the Illness Challenge and China Social Assistance foundations. It will help with diagnosis and treatment of up to 100 diseases.
With its enormous population, disparate geography and socioeconomic inequalities, China faces considerable obstacles in improving care for patients.
"Patients in remote areas like the northwest often suffer years of physical and mental torture and have to bear with misdiagnosis or delayed diagnosis before they know what's wrong," said Wang.
Wang has had to be extremely careful since childhood, as a simple fall could prove deadly, but compared with children who die of various organ failures, she thinks of herself as one of the lucky ones, "At least I can walk and breathe."
At present, Chinese patients with rare diseases have very few options in terms of treatment.
"For most of them, there is no effective treatment and when there is, patients cannot afford it," said Wang.
China is still in the early stages of making policy on rare diseases.
"Diagnosis and availability of drugs remain significant challenges," said Zhang Xue, a member of the committee for rare disease treatment and support with the National Health and Family Planning Commission.
Some progress in licensing drugs and increasing reimbursement has been made and the first national list of rare diseases will be published this year.
According to the Medical Insurance Directory, China currently has 119 new drugs at various stages of licensing and registration, of which 49 are covered by national medical insurance.
"The support program will bridge the gaps between individual patients, medical resources and insurance. We hope misdiagnosis and delayed diagnosis will become less frequent. Patients and their families deserve a good living and should know they are supported," said Wang.