The 2022 World Federation of Haemophilia Annual Global Survey (AGS) reports that 454,690 patients with inherited bleeding disorders (IBD) have been identified globally. While this represents noteworthy progress, haemophilia epidemiology data indicate that 75% of people with inherited bleeding disorders living in low‐income and low‐to‐middle‐income countries have yet to be diagnosed. The AGS also revealed that 11 billion clotting factor units are available to treat haemophilia A and B globally. Due to a lack of finance, these treatments are unavailable to haemophilia in low‐income countries with a consequence lack of access equity for haemophilia treatment in these communities. This sobering reality is not limited to haemophilia but applies to von Willebrand Disease (VWD). While VWD is the most prevalent IBD, only 103,844 people living with this condition have been diagnosed globally. Of the diagnosed patients, only a fraction live in low‐ or middle‐income countries. Moreover, the majority of VWD patients are still treated sub‐optimally without replacement therapies or prophylaxis, both of which are now accepted as global standards of care. In this state‐of‐the‐art review, the authors reflect on three issues. First, the minimum elements required to diagnose haemophilia in a resource‐constrained setting are identified. Second, this review points to the critical stakeholders and outlines their roles in removing access to haemophilia treatment barriers. Finally, the authors examine von Willebrand disease's ongoing diagnostic and treatment challenges and compare these to haemophilia. With the rapidly evolving novel therapies, the therapeutic landscape of all IBD will likely change for the better.
Introduction: The gaps in haemophilia treatment around the world are enormous; approximately 60% of an estimated 475 000 individuals are not identified. Of the 187 000 diagnosed, 30% (57 000) access clotting factor replacement therapy. Since 1996, humanitarian aid distributed by the World Federation of Hemophilia (WFH) has played a minor, yet vital role providing life‐saving clotting factor to countries in emergency situations. Donated amounts have been small and sporadic, often salvaging short‐dated products, providing little opportunity to leverage donations with governments. In 2015, a prospective donation programme of 100 million I.U. per year of extended half‐life factor VIII and IX over 10 years was established, necessitating the development of new logistics and training programmes by WFH.Aim: To measure the impact of a greatly expanded haemophilia humanitarian aid program.Materials and methods: In 2016, the first full year of the expanded programme, WFH, distributed products to 58 countries with factor VIII usage <1 I.U. per capita, a level incompatible with long‐term survival and far below the 4 I.U. FVIII per capita minimum established in Europe.Results: The scope of the programme and utilization data for 2016 indicate primarily use for acute bleeding, orthopaedic and emergency surgeries. Compared to 2014, 2016 data showed substantial increases in patients served (5.9‐fold, from 2119 to 14 579), surgeries performed (37‐fold) and bleeds treated (6.9‐fold). Patients on prophylaxis rose from 0 to 852, including 458 children under 10 years old.Discussion: The expanded humanitarian aid programme impacts an estimated 10% of individuals with haemophilia previously unable to access treatment.Conclusion: This programme represents an unprecedented public‐private partnership to deliver medicines to individuals with no access. Further, the programme offers the prospective opportunity to engage governments to take more responsiblity for increasing training, medical management, and product supply in 58 resource constrained countries.
Introduction: Gaps in the disease knowledge of People with Haemophilia (PWH) in Senegal are important barriers to the effective management of haemophilia. Digital health systems for chronic diseases in low‐ and middle‐income countries are suggested to improve education and self‐management. Artificial Intelligence (AI) chatbots could improve knowledge and support symptom monitoring.Aim: Development process and usability testing of an AI chatbot to assess its future adoption in Senegal.Methods: An AI chatbot prototype was designed based on a multilingual conversational engine using Natural Language Processing. A sequential mixed method was used including a co‐creative design process with a task force made up of PWH and medical doctors. Usability was assessed through the System Usability Scale (SUS) questionnaire.Results: An AI chatbot in French and Wolof, named Saytù Hemophilie, was developed for Android and Apple iOS devices. It was assessed as a very usable system with a SUS score of 81.7, above average. 42% would prefer to use the Wolof version even if they were very satisfied with the French version. The level of Wolof in the app did not always correspond to users’ levels. Participants praised its accessibility and reliability, and its ability to enhance self‐learning.Conclusions: Findings suggest that a culturally adapted digital conversational agent is likely to be used by PWH in Senegal and their families to improve education and self‐management of haemophilia. Relevance and impact are foreseen for other communities in Africa and beyond.