Unidade de Hemofilia 'Cláudio Luis Pizzigatti Corrêa', INCT do Sangue Hemocentro UNICAMP, University of Campinas, Campinas, São Paulo, Brazil.
Haemophilia. 2012 Jul;18 Suppl 5:33-8. doi: 10.1111/j.1365-2516.2012.02890.x.
Projects are underway in many developing countries to try to improve the provision of treatment and access to care for people with haemophilia (PWH), as long-term prophylactic treatment, which improves quality of life for PWH, is still restricted to developed countries. In most developing countries, therapy is limited to on-demand treatment or even no replacement treatment at all. Combined with limited healthcare resources, this lack of treatment can lead to a vicious circle of lack of care, disability, unemployment and lack of access to health insurance for haemophilia patients. In China, the establishment of the Haemophilia Treatment Centre Collaborative Network of China (HTCCNC), in conjunction with the World Federation of Hemophilia, has improved haemophilia care and the identification of PWH. In Brazil, on-demand treatment has improved the health of PWH but does not prevent musculoskeletal (MSK) complications, the major cause of deterioration in quality of life for PWH. The Novo Nordisk Haemophilia Foundation BR2 project was therefore designed to improve quality of life of PWH through improvements in their physical, mental and social wellbeing. This paper will briefly review these projects and describe the current status of haemophilia care in these countries. While there is still a long way to go before optimal care becomes a reality for all PWH in developing countries, significant progress has been made, and knowledge of the impact and outcomes of these projects can inform best practice worldwide.
许多发展中国家正在开展项目，试图改善为血友病患者（PWH）提供的治疗和护理服务，因为长期预防性治疗可以提高 PWH 的生活质量，但这种治疗仍仅限于发达国家。在大多数发展中国家，治疗仅限于按需治疗，甚至根本没有替代治疗。再加上医疗保健资源有限，这种缺乏治疗可能会导致缺乏护理、残疾、失业以及血友病患者无法获得医疗保险的恶性循环。在中国，血友病治疗中心协作网络（HTCCNC）的建立，与世界血友病联合会合作，改善了血友病的护理和 PWH 的识别。在巴西，按需治疗改善了 PWH 的健康状况，但不能预防肌肉骨骼（MSK）并发症，这是 PWH 生活质量恶化的主要原因。因此，诺和诺德血友病基金会 BR2 项目旨在通过改善 PWH 的身体、心理和社会福利来提高他们的生活质量。本文将简要回顾这些项目，并描述这些国家目前的血友病护理状况。虽然在发展中国家为所有 PWH 实现最佳护理还有很长的路要走，但已经取得了重大进展，了解这些项目的影响和结果可以为全球提供最佳实践。
