Monday, 16 June 2008
Private Members’ Business
I rise to support the statement of the honourable member for McEwen. For the record, I am speaking about hormone treatment that was derived from pituitary glands taken from people who had died and the people who were subsequently affected by that treatment. Over 2,100 Australians between 1960 and 1985—and some reports say 1967 because that was when the official program started but it was actually between 1960 and 1985—were treated with such for infertility in women and short stature in children, particularly boys and young men, the particular focus of the member for McEwen’s statement.
I did have a chance today to have a look at the 800-page Allas inquiry report, which I could only look at very briefly, and I know if I was able to read it I would be much better informed on this. Also I did have a look at some other documents in the Senate inquiry to which the honourable member for McEwen referred. What happened was an absolute blight on our medical history. What happened to individuals in the community and to families and people who are still feeling the impact of that today was the result of systemic failure.
In speaking in support of the spirit of the statement and from the research that I have done, and when I looked at the Senate committee report that was looking at the CJD, the Creutzfeldt-Jakob disease settlement offer where it outlined all of the findings, it is obvious that there was an absolute systemic failure on the part of all agencies, groups and everybody else involved with it who had some oversight. These are the agencies that we the public, the community, look to for trust and we were badly let down during this period. The Senate inquiry report also said that it started some 30 years ago—but 30 years ago we still had knowledge of things like this. Also, what I have read leads me to believe that there was knowledge about the hormone growth treatment that should have led us to different conclusions and different oversight.
I should also state here that the Allas inquiry terms of reference were not concerned directly with the young men and the boys who received that hormone treatment. They were not the main targets. The inquiry really came out of the four cases of the women who we thought had the Creutzfeldt-Jakob disease. That prompted the inquiry. The report, however, speaks of those young Australians who received the growth hormones via the Australian Human Pituitary Hormone Program, because that was the program under which they received it, whether they were approved or unapproved, official or unofficial. In that sense, understanding the Allas inquiry and then the Senate report is apt and it is not analogous to use it as the primary response for this debate.
There are a number of key findings and conclusions that I found to be very alarming and they were repeated in the Senate inquiry. It concluded that the history of the listing of the hormones was one of circumvention of the PBAC and direct dealings between various agencies, the Director-General of Health and the minister. It said the testing by the NBSL itself was of great concern, and on the guidelines it said:
The distribution of hormones under s.100 of the National Health Act appears to have been regarded by PBAC as a vehicle for delegating to the expert committees its normal function.
That was something that really should not have been delegated on. On the use of section 100 it said:
... it was sought to create a role for the expert committees which would be responsible for approving patients for treatment.
Those patients were let down. It went on to say:
It was an improper purpose and the Minister’s decision to list the hormones was an abuse of the power under s.100.
The last finding in this particular section talks about the role of the government decision makers and outlines a litany of tragedy of the medical history at that time. The Allars inquiry investigation, looking particularly at the Human Pituitary Advisory Committee and its subcommittees, exposed many issues of concern. The concerns were grouped under headings, and in some ways the headings themselves are sui generis.
The heading ‘research allocations’ talks about how some research allocations were allocated without the proper scrutiny and processes in place. Then it talks about ethical considerations and how various subcommittees failed to have regard to ethical considerations in a number of matters including the approval of the use of out of date hPG for ovarian stimulation tests in spite of disclaimers from CSL of their responsibility and failure to adequately sanction practitioners who failed to forward treatment sheets or failed to return hormones when their participation in the program was suspended. Then it talks about conflict of interest, which is another heading that is self-evident. Under the heading ‘knowledge of CJD’ it says that HPAC failed to respond appropriately to the knowledge of the risk and then it talks about exclusions in the regulatory role and the failures there. In the Senate inquiry report at 7.108 it says:
The Committee considers that there is evidence to suggest that treatment under the AHPHP was of a more experimental nature than has previously been suggested.
That is very alarming in itself because, before we can actually know the impact some medical treatment is going to have, there has to be a period where it is used. From my reading of it—and I am not an expert in it—it was being used as a treatment to correct some medical problems but we were not told it was experimental. Everything I have read to date leads me to the conclusion that it clearly was experimental. I found that very worrying when I read it.
The other matter is unapproved recipients. I have come to the conclusion that the unapproved recipients seem to be harder to trace than the approved recipients for a whole range of reasons, as the honourable member for McEwen has already outlined to the chamber. But that should not stop them being traced. If something is the right thing to do, the fact that it is hard to do need not stop us from doing it. They do have to be traced.
In conclusion, it was particularly young men and boys—not exclusively so; there were some girls—who received some of this treatment. In our society, short stature might not be seen as a medical condition but it is seen as not being quite acceptable. As a person who is what I consider to be short—I am about 150 centimetres—I know what it is like to be little but I am a woman and I was always the little girl at school. Boys were treated very differently. Often in our society, with girls and slimming, there are a whole range of cosmetic things that impact on us psychologically where it is recommended to us that we treat these conditions medically. We have to change how we respond to people in our society with different sorts of looks. So it seems even sadder that some of those drugs were given to people, particularly to young men and boys, and some girls, just because they were short. Listening to what the honourable member was saying about the impact that has had on constituents in her area causes me some distress because, yes, I have read about it, but she is obviously interacting with people who have been affected. I give my support to the resolution. (Time expired)