Government and Policy
Hemophilia network set up in China
By Shan Juan (China Daily)
Updated: 2010-01-14 08:19
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Wang Fengyu, 26, would not have been crippled by chronic joint disease if he had been diagnosed with the rare genetic disorder hemophilia earlier in his life.
"I bleed easily and have bruises and swelling from time to time. However, I was not diagnosed and treated properly until I was 11 years old, which led to my permanent disability," he said.
Hemophilia is an inherited bleeding disorder in which the sufferer lacks the ability to stop bleeding because of low levels, or the complete absence, of specific proteins in the blood necessary for clotting.
China has roughly 100,000 hemophilia patients, but only 5,000 are being monitored by hospitals.
Under the system, hospital-based hemophilia management centers will be set up in three to five years at State and provincial levels to register and monitor the patients and standardize disease diagnosis and treatment.
"The project, in collaboration with Baxter China, will help guide the patients seeking medical care and support comprehensive care for them," said Wang Yu, director of the medical administration department under the MOH, who announced the launch of the project yesterday.
The lack of treatment for a hemophilia patient can lead to permanent disabilities and even death, experts said.
Kong Delin, a Shanghai hemophilia patient and deputy director of the Hemophilia Home of China, a volunteer civil society of more than 3,000 patients, said his group enthusiastically welcomes the initiative.
"For sufferers, information and timely treatment means a better chance for living. The system will help track more patients and assure them of access to quality care," he told China Daily yesterday.
Presently, only one out of 10 sufferers has been diagnosed and treated, according to government estimates.
"Even in big cities like Shanghai, only two to three hospitals are able to diagnose the disease with a prevalence of 1 in 10,000 in the general population," he said.
"Definitely the situation in large and underprivileged areas of the countryside is even worse, both in diagnosis and treatment," he added.
Wang Jianxiang, president of the Institute of Hematology and Blood Disease Hospital of the Chinese Academy of Medial Science, said the new system also will facilitate trainings for medical workers, particularly those at the grassroots level, in managing the disease, which requires life-long treatment.
An integrated patient database system will help optimize resources and guide the production and availability of the plasma-derived clotting factor VIII product, he added.
Since more patients have been found, the current supply of the product falls short of patients' demands, Kong said.
About 200 hemophilia patients contracted HIV due to contaminated VIII product, mostly in the early 1990s.
