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Terms of reference
1.1 The matter was referred to the Committee on 26 June 1997
for inquiry and report by 31 August 1997. The reporting date was subsequently
extended to 1 October 1997. During the debate in the Senate, Senator Mark
Bishop, the Committee Chairman who moved the reference of the matter to
the Committee, stated that `in summary, this is a relatively defined inquiry.
The essential thrust is to examine the issue of fairness to those who
suffer, or who might suffer, from this most terrible disease of CJD.'[1]
1.2 The complete terms of reference for the inquiry are:
(1) The fairness of the recent settlement offered by the
Commonwealth Government to recipients of human pituitary hormones, with
particular reference to:
(a) whether the Government's response to the Allars Inquiry
recommendations has been fair and adequate;
(b) whether the Government refused to make certain relevant
documents related to the inquiry available to recipients;
(c) whether the Commonwealth's offer to the recipients
was fair and adequate and gave recipients sufficient time and information
to make a considered response; and
(d) whether legal aid has been unfairly denied to the
recipients, placing them under more pressure to accept the Commonwealth's
offer of settlement.
(2) Whether the Commonwealth Serum Laboratory (CSL) or CSL
Ltd, the National Health and Medical Research Council, the Department
of Health and Family Services or any other Commonwealth department,
agency or employee failed to adequately protect public safety in relation
to the Australian Human Pituitary Hormone Program.
Conduct of the inquiry
1.3 The inquiry was advertised in The Australian and
The Age on 2 July 1997, and through the Internet. In order to inform
those involved with the Australian Human Pituitary Hormone Program (AHPHP)
of the Committee's inquiry, the Department of Health and Family Services
(DHFS) was asked if reference to the inquiry could be included in an edition
of the HPH Newsletter. DHFS agreed and published a special edition
of the newsletter for July 1997 which provided information about the inquiry.
Submissions were also sought from a number of individuals and groups who
were known to be actively involved with, or who had publicly expressed
views on, issues relating to hormone recipients and the settlement offered
by the Commonwealth. It was requested that submissions be provided by
1 August 1997.
1.4 For many people, having been a recipient of pituitary
hormone treatment and being put at risk of possibly contracting CJD is
a very sensitive issue. Many people were concerned about privacy issues
and about not wanting to be identified. Nevertheless, they wanted to inform
the Committee of their feelings and opinions, and about the impact upon
their everyday life of discovering that they have been placed at risk
through treatment under the AHPHP. The Committee received 87 public submissions
and a further 50 confidential submissions. A list of the individuals and
organisations who made a public submission to the inquiry are listed in
Appendix 1.
1.5 The Committee held three days of public hearings, in Melbourne
on 12 August and in Canberra on 13 and 25 August 1997. The Committee also
held in camera sessions on two of these days. Witnesses who gave evidence
at the public hearings are listed in Appendix 2. Supplementary information
received either at or following the hearings, which the Committee has
authorised publication, is also listed in Appendix 1.
1.6 The Committee expresses its appreciation to all those
people who made submissions, provided additional material and information,
or gave evidence to the inquiry. The Committee understands the difficulties
and mixed emotions which were created for many people in determining whether,
and in what capacity, they should contribute to the inquiry. Their decision
to do so has greatly assisted the Committee in its understanding of the
range of views on the issues relating to the inquiry. The Committee is
particularly grateful for this assistance.
Comments relating to this report
1.7 The Chapters in the report consist of Chapter 2 which
outlines as background the conduct of the Australian Human Pituitary Hormone
Program, a brief description of Creutzfeldt-Jakob Disease, the Allars
Inquiry and other major events following the cessation of the AHPHP in
1985, and a description of the impact that the AHPHP has had on the lives
of recipients and their families. Chapters 3 to 6 consider in detail paragraphs
(a) to (d) of part 1 of the terms of reference. These paragraphs are discussed
in the context of the `fairness of the recent settlement offered by the
Commonwealth Government to recipients of human pituitary hormones'. Finally,
Chapter 7 focuses on part 2 of the terms of reference: whether public
safety was adequately protected in relation to the AHPHP.
1.8 Based upon the submissions and evidence which were received,
the Committee came to understand that the recipient community is not homogenous
in its opinions and expectations. The Committee appreciates that while
the CJD Support Group Network provides support and comfort and speaks
on behalf of many recipients, there are also many other recipients who,
for various reasons, do not participate in the Support Groups and who
have alternative views on the issues and directions relating to matters
affecting the recipient community. The Committee has attempted in this
report to balance the diversity of views with which it was provided.
1.9 The Committee received a considerable amount of scientific,
medical and legal evidence. The Committee notes that this was intended
to be a relatively defined inquiry and that it is therefore not in a position
to make definitive judgements on much of this evidence.
1.10 The Committee has made a number of comments throughout
the report based on the personal submissions and evidence supplied by
many recipients. In some instances this has not been attributed, primarily
to honour the confidentiality requested by the submitters. The Committee
believes that only the point being made is of relevance not the identity
of the particular recipient who may have provided it.
1.11 Submissions provided by the Departments of Health and
Family Services and Attorney-General's are, in effect, composite submissions.
The DHFS submission (No.85) has as an attachment comments prepared by
officers of the Commonwealth Serum Laboratories. References to this part
are as `CSL attachment'. The Attorney-General's Department submission
(No.74) consists of parts prepared by the Australian Government Solicitor,
and Legal Aid and Family Services Division. These parts are referred to
as AGS and LAFS respectively. Each part also specifically addresses a
particular Term of Reference (ToR) and is referred to as ToR 1(b), (c)
or (d) as appropriate.
1.12 Finally, the Committee notes that the Commonwealth Department
responsible for health matters has been the subject of a number of administrative
rearrangements and name changes in recent years. For convenience, and
unless specifically named, the responsible Department has been referred
to in the report as the `Health Department'.
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Footnotes:
[1] Senate Hansard,
26.6.97, p.4476.