As China tries to establish a universal medicare umbrella, its first move to offer treatment to all the hemophilia patients in the country is to know their population and where they are.

China's national hemophilia information management center registered 7,980 cases nationwide since its establishment last year in a bid to provide reference for making national treatment policies and medicine production quota, said the center officials Saturday.

Yang Renchi with the center and the Chinese Academy of Medical Sciences, said that the patient information database will help the government make hemophilia-related medical and social welfare policies, optimize resources and guide the manufacturing of drugs such as coagulation factor VIII.

The information center, created by the Ministry of Health, is located in the Blood Diseases Hospital of the Chinese Academy of Medical Sciences in the port city Tianjin in north China.

Hemophilia is a rare genetic bleeding disorder that prevents the blood from clotting properly, resulting in easy bruising and prolonged bleeding from trauma. Lack of treatment can lead to permanent disabilities or even death.

China is estimated to have roughly 100,000 hemophilia patients.

"Be inspired; get involved in Treatment for All" is the theme for the 22nd World Hemophilia Day, which falls on Sunday, April 17.

"A necessary precondition for 'Treatment for All' is to know the clinical information and location of each case," said Yang, "and this is exactly what the information system does."

In addition, China plans to establish hospital-based provincial hemophilia management centers within five years across the country to register and monitor patients and standardize disease diagnosis and treatment under the information system.

Shortage of drugs

Blood-derived coagulation factor VIII and recombinant coagulation factor VIII are two effective drugs which are vital for hemophiliacs. However, the drugs are expensive and produced in limited quantities, a difficulty which hundreds of thousands of hemophiliacs in China have to confront.

According to Yang, the minimum dose of coagulation factor VIII for prevention of bleeding episodes is two international units (IU) per kg of weight a day. A 50-kg hemophilia patient needs at least 36,500 IU of factor VIII every year to prevent bleeding.

"Each IU of blood-derived coagulation factor VIII costs about 3 yuan(0.46 U.S. dollars) and the annual cost is almost 120,000 yuan. The recombinant one is almost twice the price," said Yang.

Only four drug firms are qualified to manufacture blood-derived coagulation factor VIII in China. The national output in 2010 was 400,000 vials (200 IU per vial) which means 80 million IU for the entire country.

Wu Runhui, a hematology specialist with the Beijing Children's Hospital, said that the minimum dose is only for the prevention of bleeding episodes which are required to keep the patient alive. For the hemophiliac to live a regular lifestyle, 3,000 IU per kilo a year is needed, which would cost half a million yuan a year.

"Even in the most developed countries, a hemophiliac cannot survive without supportive medical policies and social welfare system," said Wu.