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President's Report
Firstly, thank you to all of you that contributed to the work the foundation
has done over the year. I also thank those new committee members that joined the foundation
over the last year.
I would like to acknowledge the contributions made by Liz Jarvis
(Haemophilia Nurse) and Clare Reeves (Haemophilia Counsellor). They have served the
haemophilia community in the ACT for the past 5 years and their efforts have improved
the lives for many of us with haemophilia. The committee and I wish them well in
their future endeavors.
HFACT would also like to thank ACT Health for their continuing
support without which HFACT would not be able to provide the services it does to
the haemophilia community.
The committee has had another busy year. On top of regular events
such as the Christmas function and men’s and women’s group meetings, active efforts
to ensure the sustainability of the committee have resulted in new members taking on
executive positions. The committee also has a new fundraising event to look forward
to in October and hopefully, this may become an annual or bi-annual event.
I took on the President’s position with a view to improving services
at TCH. I hope that things have improved at The Canberra Hospital for people with
haemophilia as a result of decisions made over the past year.
The times are certainly changing for haemophilia care. No doubt,
they have changed for the better and this is a marvelous thing for the young ones.
There is a false realisation that, provided someone has some product, all is well and
good. We always need to be wary of this misnomer. Haemophilia care is a high cost
item within a high cost item and will always be scrutinised. The new generation must
be able to defend the value of comprehensive care, prophylaxis and access to safe and
effective haemophilia treatment products. Haemophilia is a complex and specialized
condition with potentially disastrous complications if not treated properly. The cost
of not treating properly has large financial, personal and social consequences for
governments, the community and the individuals involved. This is why it is so
important to ensure access to effective and safe treatment for individuals with
haemophilia.
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We must never forget the way it used to be. Those individuals
that died or are living with HIV and Hep C because they were infected with contaminated
plasma derived treatment products ensured safe recombinant treatment products became
the standard. Those with bad joints showed how ineffective treatment on demand really
is and paved the way for prophylaxis (Only three bleeds are required before a target
joint develops) and those individuals that had to go overseas to be treated for
inhibitors showed the doctors in Australia that inhibitors could actually be treated.
As a foundation, it is easy to get caught up in the confidence
prophylaxis and recombinant products have given its members but we must always remember
those that came before. There are not as many as there once were and they will all
shuffle off the mortal coil eventually but the moment the suffering of those individuals
is forgotten, so is the fight to protect the health care objectives that those individuals
fought so hard to achieve. If we forget how hard it once was, then rest assured,
we will be reminded in the harshest fashion and once something is lost, it won’t be
as easy to regain.
HFACT must continue to put “improvements in comprehensive care at the
Canberra Hospital” as well as “ensuring individuals with haemophilia have access to effective
and safe haemophilia treatment products”, at the top of its agenda. HFACT and TCH need to
work together to provide a quality haemophilia service which includes care for secondary
conditions properly integrated into a haemophilia comprehensive care model implemented by
TCH. A multidisciplinary approach to haemophilia care and treatment, centrally coordinated
by the specialist haemophilia nurse, is paramount in order to provide effective holistic
management of the individual’s haemophilia health care.
I have decided to take a break from voluntary work for the time being.
I will say goodbye and wish you all every success in this difficult endeavor to ensure the
well being of people with haemophilia in the ACT. I have always believed in the need for
HFACT and have faith in its people and the good work they do. Personally, I wish you all
good health and happiness.
Best Wishes
Joe Guarnieri
(President)
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