Hemophilia aid project's anniversary marked with white paper

A ceremony was held on Sunday in Beijing to mark the 6th anniversary of an aid project for hemophilia patients. During the ceremony, a Hemophilia White Paper was launched.

The white paper will probe into the current status of diagnosis and treatment of hemophilia in China and provide references for medical staff based on patients' needs, according to Hu Ningning, vice-chairman of the China Primary Health Care Foundation, which initiated the project in 2015.

Organizers, experts and patients shared their experiences and suggestions in hemophilia treatment during the ceremony.

Aiming to promote social welfare, the foundation helps hemophilia patients that lack a clotting factor to stop bleeding to reduce their financial burden and rehabilitate them to a safe and sound life, said Hu.

By the end of May, the assistance program had funded a total of more than 2,800 patients over 30,000 times. Nearly 150 million yuan ($23 million) was allocated to help them.

Hu said it's hoped the launch of the white paper will advance social concern for these patients and help the public realize standardized diagnosis and treatment for them.

Hemophilia patients suffer a hemorrhagic disorder that impairs the body's ability to stop bleeding when a blood vessel is broken.

Repetitive hemorrhages without timely treatment will result in joint deformity and even disability. Severe bleeding may even threaten the patients' life, according to experts at the ceremony.

Many people with hemophilia may be impoverished due to the illness. Among the patients, 67 percent are unemployed and nearly 30 percent are disabled due to the disease, said Guan Tao, chairman of the hemophilia patient care center of Beijing.

In China, children make up the majority of hemophilia patients, costing their families at least 40,000 yuan for treatment each year, according to Wu Runhui from Beijing Children's Hospital of Capital Medical University.

"Patients' families face great pressure," Wu said.

Yang Renchi, an expert from the Tianjin-based Institute of Hematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, stressed the need for regular and preventive treatment for such patients to reduce the frequency of bleeding and improve the quality of life.

"Patients whose clotting factor functions basically can even return to normal life and take physical exercise."

In recent years, a great development is the enhancement of payment patterns with increased ratio of healthcare insurance, alleviating financial pressure on patients, Yang said.

Being a hemophilia patient himself, Guan Tao expressed his hope to realize standardized preventive treatment for patients with support from all sectors of the society.

The foundation's vice-chairman, Hu, said the foundation would join hands with diverse social organizations in the future to explore multi-level protection plans and support treatment for rare diseases, including hemophilia.

Feng Xiaojie contributed to this story.