Overview and Recommendations
Hepatitis C is a life changing disease. Infection is often
accompanied by serious and debilitating symptoms such as fatigue, lethargy and
pain. Some people with hepatitis C clear the virus naturally but this occurs
only in a minority of cases. For many, there are uncertain long term health
consequences with a number of sufferers developing cirrhosis of the liver,
liver failure or even liver cancer. The infection does not only cause serious
health problems but can also have a devastating impact on other aspects of the
infected person's life, including tension within families, loss of friends,
curtailment of social life, restrictions on employment and discrimination.
Infection with hepatitis through blood transfusion was
observed during the Second World War. While hepatitis A and hepatitis B were
both identified by the early 1970s, the virus causing non-A, non-B hepatitis,
as hepatitis C was then known, remained elusive. During the 1980s scientists
worked to identify the hepatitis C virus. At the same time debate was occurring
world-wide as to the usefulness of surrogate testing of the blood supply. Two
tests were suggested, both of which had limitations in identifying blood
potentially infected with the hepatitis C virus. These limitations included a
high rate of false-positive and false-negative results, markedly different
epidemiological contexts between countries which had voluntary blood donors and
those which paid donors, and a lack of consensus about the interpretation of
test results. As a result, much controversy surrounded the debate on whether or
not surrogate testing should be introduced.
The Australian Blood Transfusion Services, with the
exception of the Queensland Service, chose not to introduce surrogate testing.
The Committee is confident that due consideration was given to pertinent
evidence at relevant times, and that decisions taken were reasonable in the
It was not until 1988 that the virus was identified. The
first specific test for hepatitis C became available in early 1990 and testing
was immediately implemented in Australia.
The Committee considers that the most effective means of
assisting people infected with hepatitis C through blood transfusion are
improvements in services, including wider access to antiviral drugs and
financial assistance for costs not covered through existing services. The
Committee has recommended the establishment of a national post-transfusion
hepatitis C committee. The proposed committee's membership would include representatives
from government, the Australian Red Cross Blood Service, hepatitis C support
groups and individuals who have acquired hepatitis C through the blood supply.
The proposed committee should establish and manage a fund for additional
services. Both the proposed committee and the fund should be funded by the
Commonwealth and State and Territory Governments. The Committee has also
recommended a broad public education campaign to increase public knowledge of
hepatitis C. The Committee also considers that recombinant Factors VIII and IX
should be available to haemophiliacs.
Over the last decade, major changes in the organisation of
the blood service in Australia have occurred. The establishment of the National
Blood Authority and the Australian Red Cross Blood Service have led to
improvements in the management, safety and co-ordination of the blood supply.
The Committee considers that the introduction of a national haemovigilance
system would further improve safety of the blood supply.
6.21 That the Australian Health Ministers'
Advisory Council consider the introduction of mandatory reporting to the
Australian Red Cross Blood Service by State and Territory health authorities of
instances where a person is diagnosed with hepatitis C and it is judged that
the infection was contracted through the blood supply.
6.28 That, in order to ensure the
safety of patients and continued confidence in the blood supply, the Australian
Council for Safety and Quality in Health Care and the National Blood Authority
implement, as a matter of priority, a national haemovigilance system.
6.66 That the Commonwealth review the
criteria access to S100 drugs for those people suffering from hepatitis C to
provide for greater access.
6.102 That the recommendations relating to
the use of recombinant Factor VIII and Factor IX contained in the Report of the
Working Party on the Supply and Use of Factor VIII and Factor IX in Australia
be implemented as a matter of priority.
6.109 That the Commonwealth fund a national
hepatitis C awareness campaign to increase the public's knowledge of hepatitis
C and that such a campaign emphasise all the means by which the infection may
be acquired and the need for early testing and treatment.
6.134 That a national post-transfusion hepatitis C committee be
established as a priority with the purpose of:
coordinating and delivering an apology to those who have acquired hepatitis C
through the blood supply;
- establishing an effective Lookback
service delivery through a case management approach that ensures that
appropriate medical, counselling and welfare services are provided, sensitive
to the needs of people who have acquired hepatitis C through blood and blood
membership of the committee include representatives of the Commonwealth, State
and Territory Governments, the Australian Red Cross Blood Service,
representatives of organisations which support people with hepatitis C acquired
through the blood supply and individuals who have acquired hepatitis C through
the blood supply.
the committee establish and manage a fund to provide financial assistance for
costs not covered through existing services, which could include the costs of
visits and transport to general practitioners, prescribed medication and
surgical aids, dental, aural, optical, physiotherapy and chiropody treatments,
home care and/or home help, and alternative medical treatments, to the people who
have acquired hepatitis C through blood and blood products.
the committee, and the fund it establishes, be jointly funded by the
Commonwealth and State and Territory Governments.
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