Dear Members and
Friends,
Re: Bisphosphonate Treatment
Program - The Children's Hospital at
Westmead
I am writing to you to bring you up
to date with the progress with this program and to ask
for your help.
It is now 6 years since we
commenced the program. Prior to our commencement of the
program we knew of only 2 children in Sweden who had been
systematically treated with Cyclic Intravenous
Pamidronate®. A lot has happened since that time. We
now have treated 54 children and adolescents and we
expect that we will commence quite a number of patients
on Pamidronate® in 2001. The program has been
successful in helping all the children whom we have
treated. In some children, very considerably. There is
now considerable evidence that early diagnosis and early
treatment are particularly effective in preserving height
and reducing fracture frequency.
As I think most parents know, the
program has been funded to date as a research project.
This means that we have very dependent both on charitable
fund raising as well as research grant and research grant
in aid funding to ensure this program continued. The 01
Society of Australia has been a major supporter of the
program in NSW. We have however, kept the faith and I
have been to all the states of Australia except Western
Australia to talk about the program and help develop a
local program in Queensland, South Australia, Victoria
and Western Australia. Judging by our experience, there
are still many children and families who have not heard
of the treatment but who would benefit.
The first thing I would therefore
like to ask is that you as families join OI Australia if
you do not already belong. The society sends out a
newsletter and in 2001 in the last weekend in July they
will be organising a National Conference. I hope that
this National Conference will bring together for a
Medical Day, the research / treatment groups from around
Australia so that we can lobby for adequate resources and
for our funding for this important treatment. In NSW we
have been most fortunate in that the public hospitals
have paid for the cost of the drug treatment. However,
that is not case in other States in Australia and many
children are not receiving the therapy or receiving a
shorter course of therapy than desirable. The therapy is
not approved by the pharmaceutical body which overseas
the pharmaceutical benefits scheme. Treatment for adults
is not approved and there are even greater obstacles for
males with OI.
You can join the OI Society by
writing to OI Society Australia, PO Box 401, Epping NSW
2121 or calling Lyn Foxall 02-9869 1486. We need to have
a strong society which will stand behind those doctors
charged with lobbying for those who need the
treatment.
The therapy requires in-patient
admission and this is necessary because of the need for
us to supervise each infusion. There are developments in
terms of trials of newer bisphosphonates which may not
require the need for being in hospital. I would encourage
those families who have private insurance in the meantime
to register as Private Patients when they attend, as this
will mean that the public hospitals and the Children's
Hospital at Westmead in particular can bill your private
insurer for the hospitalisation. I have been assured that
as far as The Children's Hospital is concerned, there
will be no extraordinary cost apart from what is
receipted from Medicare and your Health Fund.
I make this special plea because as
you aware The Children's Hospital at Westmead and I am
sure that your District Hospitals run at a deficit. I
will be pleased to hear from you if those families who
register as private patients observe
a-disadvantage.
We have estimated that the total
cost including the medical, allied health, drug and
nursing cost are approximately $8,000 p/a per patient.
You can readily see what a considerable sum of money is
required to offer what is a new therapy from the point of
view of the hospitals. We would dearly like to take more
patients but the treatment costs are considerable. We are
very fortunate in that the NSW Cherry Growers supported
the program and the OI Society of Australia by raising
$56,650 from the Cherry Auction this October. This is
wonderful news and it ensures that the program will be
able to continue for yet another year.
I do wish you a safe holiday season
and best wishes for 2001 I hope to see you all at the
National Conference of the OI Society at the end of July,
2001.
Yours sincerely,
DAVID SILLENCE
Professor of Medical Genetics
Co-ordinator Bisphosphonate Treatment Program
2000
David Sillence MB BS, MD
(Melb),
FRACP, FRCPA, FAFPHM, MACMG|
Professor of Medical Genetics
Phone: (02) 9845 3215 Fax: (02) 9845 3204
DS/bd a380.2000
