New WFH initiative lays the cornerstone for bleeding disorders care

The World Federation of Hemophilia (WFH) announced, as part of its 50th anniversary celebration, its commitment to accelerate the work to close the gap in care worldwide. An estimated 1 in 1,000 people have a bleeding disorder, but 75 per cent of these still receive very inadequate treatment or no treatment at all. This is especially evident in developing countries, where the baseline infrastructure, resources, and time do not exist to tackle chronic conditions like bleeding disorders. The low healthcare standards in many of these areas also prevent the full uptake of support that the WFH provides through its other programs.

To address this challenge, the WFH is launching the Cornerstone Initiative, which is specifically aimed at supporting treatment and care for underserved countries where the gap in care is the greatest. “Our objective is to lay a foundation of basic care and to build partnerships that will lead to an integrated and sustainable structure of patient support and care delivery,” says Antonio Almeida, WFH programs director.

Over 10 years, the Cornerstone Initiative will select 15 target countries from among the WFH associate national member organizations—both newly recruited and prospective—where current standards of care for bleeding disorder patients, if they exist at all, are well below the standards of care of more developed countries. Then, over a two- to four-year period, this initiative will aim to improve two or three aspects of care development, scaled to the skills and resource capacity of each country. These areas could include developing and improving diagnosis capacity, providing basic training in the management of bleeding disorders, and strengthening patient organizations.

“The success of this new initiative will lead to the dramatic improvement in the lives of patients living in the most impoverished regions, the establishment of country-wide networks that meet the needs of people with bleeding disorders, and a greater capacity for shared knowledge through networking,” says Almeida.

The Cornerstone Initiative will help make the WFH vision of Treatment for All a reality. Together, we will help close the gap.

Hemophilia World
, December 2012