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.