Mind the GAP

World Federation of Hemophilia program shrinks disparities in global care
Author: Robert Leung, WFH Regional Program Manager, Asia & Western Pacific

In April 2010, China marked its one-year anniversary as a member of the World Federation of Hemophilia’s (WFH’s) Global Alliance for Progress (GAP) Program. This international collaboration is an intensive four-year effort to identify and diagnose more people with bleeding disorders.

“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,” says Yuguang Chu, president of Hemophilia Home of China, the national patient organization.

Launched in 2003, GAP is a 10-year healthcare development program designed to close the gap in care between developing and developed countries. GAP country programs are aimed at improving five main areas: government support, the care delivery system, medical expertise and diagnosis, quality and quantity of treatment products, and the national hemophilia organization.

Through training, education and the establishment of national care programs, GAP aims to increase the diagnosis and treatment of people with hemophilia and other inherited bleeding disorders. Currently, there are 11 GAP countries: Belarus, China, Ecuador, Jordan, Lebanon, Mexico, Peru, Russia, Syria, Thailand and Tunisia.

Meeting Challenges Together

The challenges of improving standards of care in such a vast and populated country like China are great, but Dr. Renchi Yang, secretary of the Hemophilia Treatment Center Collaborative Network of China (HTCCNC), says he believes China hemophilia care will be better because of GAP. The HTCCNC is a network of 23 hemophilia treatment centers across China.

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

The WFH has worked closely with China’s bleeding disorders community since 1998. WFH is building on this foundation and focusing on five main objectives:

  1. Strengthening the six core centers of the HTCCNC and its capacity to deliver comprehensive care
  2. Providing specialized hemophilia training and supporting the development of regional care
  3. Supporting the implementation of the national registry of people with bleeding disorders
  4. Building relations with government to increase funding and social insurance (equivalent of health insurance) for hemophilia care
  5. Improving the capacity of Hemophilia Home of China and its provincial groups

Several challenges need to be addressed: Healthcare resources are limited and infrastructure inadequate, and access to affordable treatment products varies. Hemophilia affects approximately 88,000 people in China, but only a small percentage have been identified. To rectify this problem, the Ministry of Health started a national registry in 2010 to replace the previous nongovernmental registry. So far the registry has identified 4,195 people with hemophilia across China. To register others, a registration center is now being implemented in each of the 31 administrative divisions throughout the country.

The GAP Program is supported by founding sponsor Baxter; sustaining sponsors The André de la Porte Family Foundation and CSL Behring; supporting sponsors Bayer, Biotest, Pfizer and Talecris; contributing sponsor the Irish Haemophilia Society; and collaborating partner the World Health Organization.