GAP Program improves care in Nigeria in 2020

Twenty participants attending an advocacy webinar typed the words “I COMMIT” on a zoom video call in 2020. The commitment was part of a call-to-action for a two-part advocacy training webinar series organized by the World Federation of Hemophilia (WFH) in collaboration with the Haemophilia Foundation of Nigeria (HFN). The webinar—part of the WFH Global Alliance for Progress (GAP) Program—was designed to encourage introspection, reflection and re-energization in participants.

Nigeria has been enrolled in the WFH GAP Program since 2020, and the HFN and the WFH collaborated to develop a five-year action plan using the WFH Comprehensive Development Model. This model is designed to work with the healthcare system, government, and social infrastructure of the recipient country to maximize the use of existing resources and to achieve long-term sustainable care and treatment for people with hemophilia and other rare bleeding disorders.

One of the year’s objectives was to expand the presence of the HFN in different regions by establishing “chapters” and creating a sustainable governance structure to support patients and families. These chapters would be empowered to undertake outreach and advocacy initiatives, and enhance access to care. Unfortunately, COVID-19 impacted these efforts dramatically. Plans for face-to-face training quickly shifted to planning for virtual training. A survey was given to members targeting patients, family members, health care teams and volunteers. The responses were used to design a two-part training program held in August and September which helped participants understand how the HFN meets their needs—specifically related to aligning individual and organizational values and the vision and strategic plan of the HFN.

The survey gave the HFN the information it needed to work with the WFH through the GAP Program to develop an effective plan for supporting the local bleeding disorders community. Four working groups were established to focus on the identified priorities: outreach, advocacy, resource mobilization and fundraising, and improving access to treatment at health facilities. To date, three out of these four groups have met and have developed actionable strategies at the chapter level. The hemophilia treatment centre working group is in the process of identifying new point-of-care centres to improve access where it is needed most. The resource mobilization group has run campaigns to encourage donations, and has already raised over $6,500. The outreach group has intensified their efforts in three states, collaborating with community health care workers to go door-to-door and raise awareness of bleeding disorders. These outreach campaigns have resulted in identifying 16 patients with bleeding disorders. The annual national hemophilia awareness week held every third week of November was also successful thanks to the dissemination of information through radio and social media channels. 

Training community health workers

Group sensitization related to bleeding disorders

Door-to-door campaign with community health care workers

Sensitization related to bleeding disorders on radio

Throughout these activities, the HFN continued to push its advocacy agenda with the government. A team was formed comprising of HFN members and federal and state desk officers and partners. Meetings have been held virtually with Ministry of Health representatives. Thanks to this endeavour, the government affirmed its support in moving the bleeding disorders agenda forward. This included an assurance by the Minister of Health to partner with the WFH to develop a policy framework to ensure bleeding disorders are given the attention they need at the government level. Special appreciation goes to the Federal Hemophilia and Sickle Cell Desk Officer Alayo Sopekan, MD, and his fellow state desk officers for the work they put into this initiative.

The HFN would like to thank WFH volunteers Dawn Rotellini (WFH Board of Directors Lay member); Bradley Rayner (President of the South Africa Haemophilia Foundation); and Mukesh Garodia (President of the Hemophilia Federation India), for their continued support in improving care in Nigeria through the WFH Global Alliance for Progress (GAP) Program.

The GAP Program is supported by funding from: Bayer, Biotest, CSL Behring, Pfizer, Sanofi Genzyme, Sobi and Takeda. The WFH would also like to thank the World Health Organization for its support of the Program.