China joins Global Alliance for Progress

The WFH’s Global Alliance for Progress project with China (2009–2012) will help improve diagnosis and treatment of people with hemophilia in one of the world’s largest countries.

On April 14, the World Federation of Hemophilia (WFH) officially launched the Global Alliance for Progress (GAP) project in China at a ceremony in Beijing. This international collaboration will be an intensive four-year effort to identify and diagnose more people with bleeding disorders in China, improve access to safe and affordable treatment, and help develop sustained programs for comprehensive care.

Prof. Qimin Zhan, Vice Chairman of the Chinese Academy of Medical Sciences and the Peking Union Medical College

The challenges of improving standards of care in such a vast and populated country are great, but there are also many potential opportunities for success.

“The launch of the GAP project is good news that without doubt brings hope to tens of thousands of people with hemophilia living in China,” said Yuguang Chu, president of Hemophilia Home of China.

“It is good news to the hemophilia patients and healthcare providers in China that WFH launched the GAP China program in Beijing, China,” said Dr. Renchi Yang, president of the National Hemophilia Cooperative Group. “I am sure that hemophilia care will be improved with the support of this program.”

Mark Skinner, president of the WFH commented, “Through the GAP project we hope to help establish a sustainable national program that provides care, treatment, and support for those living with bleeding disorders in China.”

The ceremony was attended by 70 people, including government officials, hemophilia professionals, patient leaders from China, and representatives from the WFH and the World Health Organization (WHO), a key partner in the GAP project.

Steady progress since 1998

The WFH has worked closely with medical professionals and patient leaders in China for many years. We have made steady progress in advancing hemophilia care in parts of the country. These achievements include: the exchange of extensive skills and knowledge through the Treatment Centre Twinning Program from 1997 to 2007; development of a national patient registry; establishment of China’s Hemophilia Treatment Centre Collaborative Network in 2004; many training workshops and international fellowships for medical professionals over the years; and leadership and organizational capacity-building workshops for patient leaders.

The WFH has also helped translate into Chinese a number of key publications for both healthcare professionals and people living with hemophilia and other inherited bleeding disorders. These successes have helped set the foundation for developing comprehensive hemophilia care in China.

Key goals in China

The GAP development plan for China focuses on five main objectives:

• Strengthen the six core centres of China’s Hemophilia Treatment Centre Collaborative Network and their capacity to deliver comprehensive care;
• Provide specialized hemophilia training and support the development of regional care;
• Help develop and implement the national registry of patients with bleeding disorders;
• Build relations with government to increase funding and social insurance for hemophilia care; and
• Improve the capacity of Hemophilia Home of China and its provincial groups.

Elements for success

Dr. Baolai Hua (second from right) from Peking Union Medical College Hospital and patients from Beijing

Numerous factors are important for the development of a sustainable national program for hemophilia. In China, twinning partnerships, the enthusiasm and commitment of healthcare professionals and patient representatives, and a long-standing culture of coordinated collaboration have been the key elements for success.

The collaborative network of hemophilia treatment centres (in Tianjin, Guangzhou, Shanghai, Beijing, Hefei, and Jinan) brings together a critical range of clinical and research expertise. Together, the centres have initiated important projects related to patient registry, nursing, laboratory diagnosis, physiotherapy, pediatric care, and low-dose prophylaxis. More than 20 physicians, nurses, and lab technologists at these and other centres have received fellowships and training at a WFH international hemophilia training centre.

Hemophilia Home of China is active in many cities and now includes 22 provincial/municipal chapters. It has fostered excellent relations and collaboration with doctors.

Challenges to address

The key challenges for the development of hemophilia care across China include the limited healthcare resources, inadequate healthcare infrastructure, limited expertise in hemophilia diagnosis and care, and varying levels of access to affordable treatment products.

While the central government sets national healthcare policy, it does not purchase factor concentrates but rather directs that they be covered in provincial health insurance plans. As a result, there is great diversity in the delivery and quality of hemophilia care across the country and even within a specific province.

The country’s vast geography and large population, with more than 50 per cent living in rural areas, are also challenges. One of the priorities will be to support the core centres in their work to extend the reach of hemophilia care delivery to more parts of China. This is a daunting task, but it is a very important one. Each centre in the collaborative network will focus on developing care in a different region of China, by educating and training healthcare professionals and creating centres in the main provincial cities.

It is estimated that about 80,000 to 120,000 people in China have hemophilia but only a small percentage have been identified; the national patient registry includes 3,360 patients. Reaching the many undiagnosed patients and providing proper treatment and healthcare will require long-term commitment from all partners and levels of government.

A key role of the WFH will be to continue dialogue and meetings with China’s Ministry of Health and Ministry of Labour and Social Security to discuss access and availability of factor concentrates, and government support to supply concentrates. A gradual, strategic, and comprehensive approach will be required to achieve the goals of this ambitious and long-term project.

The WFH is grateful for the support for the GAP program provided by founding sponsor Baxter; sustaining sponsor CSL Behring; supporting sponsors Bayer, Biotest, Talecris, and Wyeth; and collaborating partners the André de la Porte Family Foundation, the Irish Haemophilia Society; and the World Health Organization.

A Brief Historical Timeline of WFH activities in China

Robert Leung
WFH Regional Program Manager, Asia & Western Pacific
Hemophilia World, August 2009

For more information on GAP, contact Antonio Almeida at aalmeida@wfh.org.

What is GAP

Resources

Last Updated August 2009