Impact of humanitarian aid linked prophylaxis in Côte d'Ivoire (Ivory Coast)

Pierce, Glenn F.; Haffar, Assad; Coffin, Donna

doi:10.1111/hae.14246

Cited by 2 publications

(1 citation statement)

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“…While this therapy is still experimental and several hurdles remain, it is clear that substantial progress has been made 75 . For the majority of the world's haemophiliacs, born in countries where these expensive treatments are unaffordable, solidarity with the more fortunate members of the global community continues to be effected through the donation programs organised by the WFH 76 . The development of a universally accessible form of gene therapy is crucial for these patients, and the funding of gene therapy continues to be a subject of debate 77 …”

Section: Haemophilia Over the Course Of Our Livesmentioning

confidence: 99%

The legacy of haemophilia: Memories and reflections from three survivors

Farrugia

Smit

Buzzi³

2022

Haemophilia

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Following the publication of a book of personal memories by one of us (CS1,2), we have attempted to synthesis our joint memories of three ageing men, born in the era preceding universal access to treatment, in an attempt to describe our experience, our challenges and our reflections on the development of therapies, which have ensured that our experience of growing up with haemophilia in the 1950s and 1960s has not been mirrored by the current generation of patients. We describe our upbringing in different parts of Europe in health care systems which, while of varying standards, were all unable to offer the kind of care which developed after the development of specific therapies. We assess the effect of the contamination of these therapies by blood‐borne pathogens on our own development, and the development of our communities around us. In addition, we reflect on the lessons learnt, sometimes painfully, by our generation of people with haemophilia and how some of these enabled us to overcome substantial hurdles, survive and build productive lives. Finally, we survey the development of therapies in the past 20 years, and offer some reflections on how our experience can be integrated in a realistic expectation of what the future holds for our community, in our own affluent societies and in countries less advantaged economically. We hope that our thoughts may contribute to continued progress in the field of haemophilia care.

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Section: Haemophilia Over the Course Of Our Livesmentioning

confidence: 99%