WFH NETWORK

The Global Alliance for Progress - 5 Years of Success

In 2003, the WFH launched the GAP project to improve treatment and build national hemophilia programs in up to 30 countries over 10 years. A primary goal of GAP is to increase the overall number of patients diagnosed by 50,000 worldwide. Globally, since 2003, 41,395 new patients with bleeding disorders have been diagnosed including 31,189 with hemophilia.

Fourteen countries have been selected for GAP – Armenia, Azerbaijan, Ecuador, Egypt, Georgia, Jordan, Lebanon, Mexico, Philippines, Thailand, and Russia. In 2008, Belarus and Tunisia joined the list, along with China in preparatory phase.

Across the board, there is tremendous progress in each country. As we reach the halfway point in GAP, it is noteworthy to count the many accomplishments to date.

One of the keys to improving care for people with bleeding disorders is building a coalition including the medical community, patient organization, and Ministry of Health. Formal agreements have been signed with the governments of Armenia, Azerbaijan, Ecuador, Egypt, Georgia, Jordan, Lebanon, Thailand and Tunisia establishing a national hemophilia program.

We have achieved major breakthroughs in many GAP countries and substantially increased the level of government support for hemophilia care. For example, the governments of Azerbaijan, Jordan, Georgia, Thailand, and Russia officially launched full National Hemophilia Care Programs and more than doubled their budgets for hemophilia.

Outreach and diagnosis are the essential first steps in improving treatment. Over 8,500 newly identified patients with hemophilia, von Willebrand Disease and other bleeding disorders have been diagnosed and registered in the GAP countries alone.

In Mexico, for example, there was no national patient registry when GAP started. The Hemophilia Federation of the Republic of Mexico developed a national registry and organized regional outreach projects to identify and register patients. The outreach projects in Mexico City and Mexico State were especially successful, identifying 406 new people with hemophilia in only one year. Now, the national patient registry includes 3,625 people with hemophilia and 67 with von Willebrand disease. Of these, 1,527 are newly identified patients.

Improving medical expertise through training of all members of the multidisciplinary health care team is another critical element of GAP. To date we have provided specialized training to 2,478 hemophilia care team members and more generalized education on bleeding disorders to another 4,438.

In Egypt, for example, treaters, the Egyptian Hemophilia Society, and the University of Cairo organized a training workshop for physical therapists in 2006. The next year, the WFH and the University of Cairo held a train-the-trainer workshop to teach physical therapists from around the country how to train other physical therapists on exercises and proper techniques. Now, Egypt is poised to go one step further and organize train-the-trainer workshops for physical therapists in the whole Middle Eastern region.

Increasing the availability of treatment products is also a significant turning point to bringing about adequate treatment in a country and is a cornerstone of GAP. Since 2003, GAP countries have reported to the WFH a total cumulative increase of 467 million units of clotting factor concentrates supplied in the GAP countries concentrates.

Russia joined the GAP program in 2004. At that time, treatment products were very limited and mainly available in St. Petersburg and Moscow. The central government purchased 1.4 million units of clotting factor concentrates in 2004. Over the years, the Russian Hemophilia Society successfully lobbied the government to purchase more factor concentrates for patients. Thanks to their efforts, now treatment is available in every region throughout Russia and a large number of children are on prophylaxis. In 2007, the government purchased more than 200 million IU of clotting factor concentrates.

The last key piece for GAP is the patient organization. Without a strong patient group to move the project forward, lobby for improved care, and educate patients and their families, success is unlikely. Through GAP, we have facilitated the education and training of 2,974 patients, family members, and patient organization board members. The increased resources and training focused on patient organizations have ensured the treatment gains will be sustainable long after the GAP project concludes.

We wish to thank all of our volunteers, national hemophilia organizations, government partners, and GAP sponsors for helping us achieve these goals. In particular, we are grateful for the support provided by our founding sponsor Baxter; sustaining sponsors the Andre de la Porte Family Foundation and CSL Behring; supporting sponsors Bayer and Wyeth; and Biotest, the Irish Haemophilia Society and the World Health Organization. We are also pleased to announce that Talecris is a new GAP sponsor.

Hemophilia World, April 2008