{"title":"乌干达的治疗差距——Peter Nangalu","authors":"Luke Pembroke","doi":"10.17225/jhp00137","DOIUrl":null,"url":null,"abstract":"Many people in the haemophilia community are aware of the disparity in access to healthcare and resources between developed and economically developing countries. In Uganda, for example, it is estimated that only four out of every 100 people with haemophilia are diagnosed. Access to effective treatments is severely limited, and care for people with haemophilia is available only from Mulago Hospital in the capital, Kampala. Prophylactic factor replacement is not an option, and humanitarian aid donations have allowed for on-demand factor treatment only in recent years. According to the World Federation of Hemophilia, per capita use of factor VIII in Uganda is around 350 times lower than in the UK . Speaking with Peter Nangalu reveals what that treatment gap means for people living with haemophilia. Peter is 23 years old. Despite having severe haemophilia, he is studying computer science at Kampala University. It is an impressive achievement to have got so far: many people born with haemophilia in Uganda do not survive into adulthood. The resilience and strength Peter has shown throughout his life is truly remarkable. Problems started for Peter at age two, when he suspects an attack of malaria marked the first manifestations of haemophilia.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"43 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2019-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":"{\"title\":\"The Ugandan Treatment Gap – Peter Nangalu\",\"authors\":\"Luke Pembroke\",\"doi\":\"10.17225/jhp00137\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Many people in the haemophilia community are aware of the disparity in access to healthcare and resources between developed and economically developing countries. In Uganda, for example, it is estimated that only four out of every 100 people with haemophilia are diagnosed. Access to effective treatments is severely limited, and care for people with haemophilia is available only from Mulago Hospital in the capital, Kampala. Prophylactic factor replacement is not an option, and humanitarian aid donations have allowed for on-demand factor treatment only in recent years. According to the World Federation of Hemophilia, per capita use of factor VIII in Uganda is around 350 times lower than in the UK . Speaking with Peter Nangalu reveals what that treatment gap means for people living with haemophilia. Peter is 23 years old. Despite having severe haemophilia, he is studying computer science at Kampala University. It is an impressive achievement to have got so far: many people born with haemophilia in Uganda do not survive into adulthood. The resilience and strength Peter has shown throughout his life is truly remarkable. Problems started for Peter at age two, when he suspects an attack of malaria marked the first manifestations of haemophilia.\",\"PeriodicalId\":372940,\"journal\":{\"name\":\"The Journal of Haemophilia Practice\",\"volume\":\"43 1\",\"pages\":\"0\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2019-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"The Journal of Haemophilia Practice\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.17225/jhp00137\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of Haemophilia Practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.17225/jhp00137","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Many people in the haemophilia community are aware of the disparity in access to healthcare and resources between developed and economically developing countries. In Uganda, for example, it is estimated that only four out of every 100 people with haemophilia are diagnosed. Access to effective treatments is severely limited, and care for people with haemophilia is available only from Mulago Hospital in the capital, Kampala. Prophylactic factor replacement is not an option, and humanitarian aid donations have allowed for on-demand factor treatment only in recent years. According to the World Federation of Hemophilia, per capita use of factor VIII in Uganda is around 350 times lower than in the UK . Speaking with Peter Nangalu reveals what that treatment gap means for people living with haemophilia. Peter is 23 years old. Despite having severe haemophilia, he is studying computer science at Kampala University. It is an impressive achievement to have got so far: many people born with haemophilia in Uganda do not survive into adulthood. The resilience and strength Peter has shown throughout his life is truly remarkable. Problems started for Peter at age two, when he suspects an attack of malaria marked the first manifestations of haemophilia.