 Global Alliance for Progress to more than double the number diagnosed and receiving treatment for hemophilia, in up to 40 countries.
Montreal , April 15, 2003. Since 1990, the global hemophilia community has used World Hemophilia Day, on April 17, to raise awareness of this rare bleeding disorder and draw attention to the plight of people living with hemophilia in the developing world.
This World Hemophilia Day, the World Federation of Hemophilia (WFH) is launching the Global Alliance for Progress (GAP) in hemophilia: a project to greatly increase the number of people diagnosed with and receiving treatment for hemophilia, in up to 40 developing countries, over the next 10 years.
“With proper treatment, people with hemophilia can live perfectly healthy lives,” said WFH president Brian O’Mahony, a person with hemophilia who lives in Dublin, Ireland. “But without treatment, hemophilia causes crippling pain, chronic disability, and premature death.”
The WFH estimates that there are some 400,000 people throughout the world with hemophilia. Yet only 30% have been diagnosed. The majority of those diagnosed and receiving regular treatment with clotting factor concentrates live in the more prosperous countries, where comprehensive hemophilia care is included in the national healthcare system. In countries with low gross national income, the opposite is true. The vast majority of people with hemophilia remain undiagnosed and untreated. In these countries, it is unlikely that a child with hemophilia would live to see his 20 th birthday.
“The time has come to close the unacceptable gap in worldwide hemophilia care,” declared O’Mahony. “Our challenge is to close the gap between the estimated and actual number of people diagnosed with hemophilia, the gap between the amount of treatment product needed versus what is available, and the gap between the number of people born with hemophilia and those who reach adulthood.”
Through the GAP, the WFH expects to increase the overall number of people diagnosed with hemophilia by 50,000, an increase of approximately 130% in the targeted countries. At the same time, the GAP will ensure that these new patients, and the many thousands who are now diagnosed but untreated, receive access to basic, life-sustaining care.
Currently, the WFH has ongoing hemophilia care improvement projects in 25 emerging or developing countries. The GAP will build upon this work, initiating programs in many more countries and strengthening existing programs to become national in scope. The aim is to build sustainable hemophilia care programs that are an integral part of the national healthcare system.
Starting in 2003, four or five countries will be targeted per year, for projects of three-to-four years in duration. “This year, we intend to target one country from each of the following regions: Latin America, Southeast Asia, Eastern Europe, and the Middle East,” O’Mahony revealed. Among the initial countries under consideration are Mexico, the Philippines, Georgia, and Egypt.
GAP to use successful WFH development model
“The WFH will work with local doctors, the national hemophilia patient organization, and the government to draw up a practical and achievable plan and to ensure availability of the most appropriate form of replacement therapy for that particular country,” said Dr. Bruce Evatt, Chief of the Hematologic Diseases Branch of the U.S. Centers for Disease Control and Prevention.
In his voluntary capacity as WFH Vice-President Developing World, Evatt has been instrumental in constructing the WFH’s development model for sustainable national hemophilia care programs. The GAP will use this same successful model, but the scale and the number of projects will increase significantly.
The model works on several fronts:
- Securing government commitment to a national hemophilia program that’s integrated into the national healthcare system and includes a network of designated hemophilia treatment centres;
- Educating and training clinicians, laboratory scientists and other healthcare professionals to help ensure adequate expertise in diagnosis and treatment;
- Developing models for effective use of locally produced blood products and a clear strategy for the use of factor concentrates;
- Building a strong, active, and united national patient organization that can play an effective education role and lobby the government for continued access to care.
“We have data to show that there is a fivefold increase in the number of people with hemophilia surviving into adulthood when a national hemophilia care program and a network of treatment centres is in place,” claimed Evatt.
Funding
The WFH will contribute one third of the estimated U.S. $850,000 needed to fund the first year of the GAP project. Additional financing will come from alliance partners in the pharmaceutical industry as well as charitable foundations and trusts. “The WFH is pleased to have Baxter, Bayer Biological Products, Aventis-Behring, the Katharine Dormandy Trust, and the Andre de La Porte Family Trust as key partners in the GAP project,” stated O’Mahony. “We are fortunate to count on their expert advice and support and will work together on developing action plans and defining criteria for success.” The corporate alliance partners have pledged a combined U.S. $500,000in 2003 alone.
“Our common goal is to help people with hemophilia live a normal life, no matter where they live,” said O’Mahony. “The time has come for us to face this challenge together, and overcome the obstacles to adequate, life-sustaining care.”
About the WFH:
The World Federation of Hemophilia is an international not-for-profit organization based in Montreal, Canada, whose mission is to introduce, improve, and maintain care for people with hemophilia and related bleeding disorders. With National Member Organizations in 101 countries and official recognition by the World Health Organization, the WFH has become the representative for the global hemophilia community.
Using a variety of programs and tools, the WFH promotes sustainable development and ongoing improvement in countries with limited access to hemophilia care. It strengthens and unites the hemophilia community by encouraging the transfer of knowledge and skills between countries with well-developed hemophilia care and those where care is lacking. The WFH is also involved in fostering discussion on key issues such as safety and supply of blood products that are critical to the hemophilia community worldwide.
Contact:
Elizabeth Myles
Director, Communications
World Federation of Hemophilia
(514) 875-7944
E-Mail: emyles@wfh.org
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