WFH NETWORK

Cornerstone meeting discusses successes and options for moving forward

Launched in 2013, the Cornerstone Initiative works towards closing the gap in care for people with bleeding disorders, with a focus on improving diagnosis and treatment in 15 of the world’s most underserved countries or regions. Cornerstone is a key program for the World Federation of Hemophilia (WFH) because it lays the foundation for basic care. The meeting held at the 2018 WFH World Congress provided an overview of the initiative, offered specific country updates from national member associations (NMOs) from Nepal and Zambia and provided a forum for a discussion on how to best have an impact moving forward.

Alain Weill, President of the WFH, opened the session by thanking all attendees for their hard work and dedication to Cornerstone since its inception. Antonio Almeida, Director, Programs & Education at the WFH then gave a brief history of the program, saying that, “The Cornerstone Initiative is part of our continuum of care,” adding that, “Volunteers are a tremendous force.”

The first country presentation was given by Bishesh Sharma Poudyal, Associate Professor and Chief, Clinical Haematology and Bone Marrow Transplant Unit, Civil Service Hospital, Katmandu. Poudyal discussed the accomplishments of the hemophilia community in his country, highlighting that in 2017—for the first time­—hemophilia was officially categorized as a disability in Nepal according to the Persons with Disabilities Rights Act. He mentioned that while that status update was very beneficial to the community, it was also difficult for some to accept because, as Poudyal explained, “Hemophilia patients don’t want to be considered disabled.”

The uplifting presentation by Maurice Muchinda of the Haemophilia Foundation of Zambia focused on improvements that have been driven in part by the Cornerstone program. He gave examples of progress such as the fact that the number of people on the patient register has increased and the willingness the government has shown to procure clotting factor.

The final presentation was by Olivia Romero-Lux, from the Association française des hémophiles. She highlighted the work the French national member organization (NMO) has done and their commitment to working with developing countries through the AFATH Program (Alliance franco-africaine pour le traitement de l’hémophilie), an initiative to promote hemophilia care in Western African countries. Regarding their work in Africa, Romero-Lux said that they collaborated with the organizations there as partners, and that they never took the position that they were, “Going there to teach them lessons,” but rather they were, “going there to work with them.”

Alain Baumann, WFH CEO, opened a collaborative discussion session following the presentations, calling on all NMOs to renew their commitment to the Cornerstone Initiative. Participants called for more collaboration and sharing of resources between the WFH and NMOs. The French NMO method—which focuses on close collaboration between organizations in the country—was highlighted by others as an inspirational approach. Baumann also seized on an idea circulated during the meeting of NMOs being “ambassadors” of the Cornerstone Initiative program, mentioning that the term captures one of the key ways participants should view their role.

Alain Weill closed the event on a congratulatory note, saying that doctors and others involved in the program are, “Highly motivated and very happy to help countries in need.”