Improving access to hemophilia care in sub-Saharan Africa by capacity building

Diop, Saliou; Haffar, Assad; Mahlangu, Johnny; Chami, Irene; Kitchen, Steve; Pierce, Glenn F.

doi:10.1182/bloodadvances.2019gs121537

Cited by 19 publications

(21 citation statements)

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“…Finally, the WFH Humanitarian Aid and WFH Africa Officers commented on the different options taken and made proposals. 6,13 After this working party on "methodology", an initial draft was drawn up and given to each group for further improvement. These texts were then sent to our African medical and patient organizations for corrections.…”

Section: Me Thodsmentioning

confidence: 99%

“…[1][2][3][4][5] Although the combined population of such countries represents 60% of the world's, they represent only 7.2% of the total FVIII Units International consumption. [6][7][8] International collaborations can really improve haemophilia in the developing world. 9 In 2012, the French Association of Haemophiliacs (AFH) decided to donate the entire financial benefit from the World Haemophilia Congress in Paris to set up, together with the World Federation of Hemophilia (WFH), a programme of associative and medical support for 15 French-speaking sub-Saharan African countries.…”

Section: Introductionmentioning

confidence: 99%

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How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

Sannié¹,

Moerloose²,

Albert³

et al. 2021

Haemophilia

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Introduction: There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low-income countries in the field of haemophilia is planned. Aim: To draft recommendations to clarify the methodology when a partnership between low-and high-income countries is planned with the objective of a long-term implication. This methodology is to be implemented for fulfilling both medical and associative aims. Methods: Based on the available literature, a first document was written, then diffused to AFATH (Alliance Franco-Africaine pour le Traitement de l'Hémophilie) members, and after a one-day meeting and further amendments, a second draft was approved by all members before submission for publication. Results: Based on 6 years experience, several recommendations regarding the joint and separate roles of patient association and HCP for a first mission in French-speaking sub-Saharan African countries have been established. The proposed methodology for establishing preliminary contacts, the first visit and the key points for diagnostic action, medical follow-up, patient education and advocacy strategy outlines a model of partnership between patients and HCP. Conclusion: This paper written jointly by patients and physicians underlines the importance of reciprocal expert guidance and a partnership based on complementary inputs.

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Section: Me Thodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

Sannié¹,

Moerloose²,

Albert³

et al. 2021

Haemophilia

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“…Problematic access to treatments due to financial difficulties is mentioned by all participants as a major concern; carriers mentioned specifically the costs of transportation since in this study most of them lived outside Dakar. The WFH has taken several actions in sub‐Saharan Africa, which have already important beneficial impact of haemophilia care 20 …”

Section: Discussionmentioning

confidence: 99%

Unravelling the knowledge, beliefs, behaviours and concerns of Persons with Haemophilia and their carriers in Senegal

et al. 2020

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Haemophilia is a genetic condition affecting 1 out of 10 000 people around the world. The lack of diagnosis is one of the main health challenges for PWH, as only 25% of the global haemophilia patient population have been identified. 1 In Senegal, for example, a study reports a prevalence of 2.3/100 000 male births, accounting for only 11.6% of the expected figure in the country. 2 Very few studies have focused on haemophilia in sub-Saharan Africa, the epidemiological data being mainly obtained from Senegal, 2 South Africa, 3 Zimbabwe, 4 Nigeria, 5 Cameroon 6 and Ivory Coast. 7,8 These studies highlight worrying trends as reported by Diop et al 2 who emphasize

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“…In the last decade, significant advances were made in establishing wide‐spread capability for diagnosing haemophilia and providing basic standardized care by building an HTC network across at least 29 African countries 56 . Factor use is very low (<0.1 IU FVIII/capita), but supply is increasing.…”

Section: Haemophilia and Gene Therapy In Sub‐saharan Africa And Southmentioning

confidence: 99%

Hemophilia gene therapy—New country initiatives

2020

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Gene therapy is an opportunity for haemophilia patients to receive a one‐time treatment and have lasting factor levels for years or decades instead of dependence on repeated administration within short intervals and on sustained supply of drug. Great strides have been made in the development of gene therapy for haemophilia in the last decade. Adeno‐associated virus (AAV) vector–mediated gene transfer in haemophilia A and B has entered the phase III trial stage. Gene transfer by lentiviral vector or gene editing technologies using factor VIII (FVIII) or IX (FIX) genes are now entering clinical evaluation. It is expected that the first FVIII and FIX gene therapy products will soon be approved and distributed in major markets. Global access to gene therapy is a critical goal. This review presents new and ongoing efforts towards this goal in countries other than North America and Europe. In Japan, researchers, regulators and funders have established a promising gene therapy development platform for multiple diseases including haemophilia. Decades of scientific and clinical research in haemophilia gene therapy in China have led to a recently registered clinical trial of AAV‐mediated gene therapy for haemophilia B. Other countries are in earlier phases of building gene therapy programmes or participate in international trials. A phase 2 feasibility trial of AAV‐mediated FIX gene therapy in low‐ and middle‐income countries aims to demonstrate that gene therapy could become available in resource‐constrained socio‐economic settings. The different strategies for establishing gene therapy provide opportunities for closing the global gap in haemophilia care.

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Improving access to hemophilia care in sub-Saharan Africa by capacity building

Cited by 19 publications

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How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

Unravelling the knowledge, beliefs, behaviours and concerns of Persons with Haemophilia and their carriers in Senegal

Hemophilia gene therapy—New country initiatives

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