Charging life battery

"Each cent counts in the life sustaining treatment. A hemophilia patient's life can be prolonged by every dose of coagulation factor VIII. The free treatment provided by Russian government to hemophilia patients can be an inspiring model of 'Treatment for All' in China," said Yang Renchi.

The World Federation of Hemophilia initiated its Global Alliance for Progress (GAP) program in 2003, supporting countries such as Egypt, Thailand, Venezuela and Iran in establishing national medical treatment centers and registration systems.

Public awareness, excellent medical teams and a sound social welfare system are the premises for the effective treatment of China's hemophiliacs, Wu said.

Wang Lixin, a 43-year-old hemophilia patient and chairman of the Hemophilia Home of Tianjin, said he witnessed improvements in medical conditions for hemophilia sufferers over the past decade. Now Wang devotes himself to promoting the prevention of bleeding episodes.

In June 2009, Bayer Healthcare collaborated with the China Charity Federation to launch an aid program in China's 23 cities that provides free recombinant coagulation factor VIII to severe hemophilia patients between ages 2 and 18 for three months to reduce deformations from arthritis. The program was restarted in July 2010.

In 2006, Denmark-based Novo Nordisk Hemophilia Foundation (NNHF) launched a 3-million-yuan project in China focusing on education, screening and registration within the six main medical centers in Shanghai, Beijing, Tianjin, Hefei, Guangzhou and Jinan.

NNHF has funded six laboratory technicians from three medical centers in China to study at the Royal Free Hospital Laboratory in London and aided the training of 330 physicians, 89 nurses and 65 laboratory technicians in China.

Li Kuixing, a nurse with the hematology department of Peking Union Medical College Hospital, said that hemophilia has been covered in the medicare reimbursement system in cities like Beijing, Shanghai, Tianjin, and provinces like Guangdong, Jiangsu, Guizhou, and Yunnan since 2008.

"In urban areas of Beijing, reimbursement rates for hemophilia patients are between 70 to 90 percent, depending on different age groups," said Li.

Dilemma in safety

If they receive enough coagulation factor VIII, hemophilia patients are no different than healthy people. However, there is a safety dilemma between imported blood drugs and safety.

"The restrictions placed on importing blood product should be lifted to solve the shortage of coagulation factor VIII," said Yang Renchi. "Foreign products are much more secure, but careful and effective safety checks are key."

According to a notice jointly-issued in the 1980s by China's Ministry of Health and General Administration of Customs, blood products including coagulation factor VIII, are banned for import, except for some kinds of Human Albumin.

Also, donations of blood and blood plasma are falling dramatically in recent years, as a result of safety concerns from donors and the government's efforts to regulate blood collection after contamination triggered HIV infection scandals.

The fall has caused a shortage in both hospital supplies and vital drugs for hemophiliacs that the plasma is used for.

In an overhaul of plasma collection services in 2004, the Ministry of Health closed 262 donation centers, leaving only 138 in operation, resulting in the plasma donations falling at least one-third from 5,000 tonnes in 2003.

To increase the output of blood-derived coagulation factor VIII, China has adopted a more flexible policy, allowing the country's other medical firms to allocate their remaining blood and plasma materials to the four qualified firms to manufacture more blood-derived coagulation factor VIII.

"The government's policy is becoming more reasonable, however, the allocation needs more medical firms to support, giving up some business profits," said Yang.

According to Yang, government concern is a good start to conquer a disease and the establishment of the national hemophiliac information management center can definitely provide clinical data for policy-making and eventually create a healthy future for patients.