The social ecology of new technologies and haemophilia in New Zealand: "A bleeding nuisance" revisited

Abstract

This research builds on previous studies conducted by the “Living with haemophilia” researchers over the past decade in New Zealand. The current study investigates the implications of new treatments, new technologies, and changes in health care for people and families with haemophilia and those who care for them, in the context of everyday living with haemophilia. The research design used semi-structured face-to-face interviews and/ or telephone interviews with 37 people, and participantobservation at a range of haemophilia gatherings. We asked people to share with us their perceptions and/ or experience of prenatal genetic diagnosis, preimplantation genetic diagnosis, gene therapy, and new treatments for hepatitis C, as well as their everyday experiences with haemophilia. The study design and the reasons we undertook it are described in the introduction. The first substantive section highlights the everyday issues of living with haemophilia as a bleeding disorder. The second discusses the organisational ecology of haemophilia. The third traverses issues concerning haemophilia as a genetic disorder, passed down the generations, and the final section explores the presence of hepatitis C in the haemophilia community. In the conclusions we note that there are still some difficulties around the timely diagnosis of haemophilia. However, treatment for many people has changed from on-demand to prophylaxis and from the provision of blood products to recombinant products. These technologies have had significant effects on perceptions of the seriousness of haemophilia, on the safety of products, on daily living, and on relationships with the treatment sources: from products made from donations, to those manufactured by multinational pharmaceutical companies. There was a high level of awareness of the costs of treatment, compared to the earlier studies. The formation of a National Haemophilia Management Group, which was a result of years of work between the Haemophilia Foundation of New Zealand (HFNZ), medical experts, and Ministry of Health officials, was a very welcome development in 2006. The HFNZ continues play an important part in many people’s lives. Despite a continuing emphasis on women as carriers, there is a greater realisation that men, too, pass on haemophilia, and that women can suffer from bleeding problems. Parents were exercised by the timing of when to tell their daughters about their carrier status, but carrier testing very seldom incurs the long delays of earlier years. Issues around carrying haemophilia on and reproductive choice are handled with great care in this community. A wide range of views were encountered, tempered by respect for the positions of others. Discussion of gene therapy was a little passé in this community, as it had been on an ever-moving horizon for many years, and because new alternative treatments were seemingly offering considerable benefits. However, gene therapy was not dismissed as a future possibility. Hepatitis C has had important effects on this community and on the individuals within it: effectively there is a hep C generation and a post-hep C generation. It was heartening that those undergoing the most recent form of treatment appeared to be experiencing better outcomes, although the treatment itself was gruelling. At the end of this research period, a Government announcement of acknowledgement, compensation and treatment was made, fulfilling a decade and a half of struggle for recognition of harm.