Fran Bailey (McEwen, Liberal Party) Share this | Hansard source

I rise to speak to the motion listed in my name. On 1 November 1971, the Melbourne Herald ran a story that reported on scientific work being conducted at Prince Henry Hospital that was a breakthrough in the treatment of abnormal growth in children. A means of measuring children’s growth hormone produced in their pituitary glands enabled doctors to ascertain the height stature of children. The treatment developed to correct predicted stature abnormalities was to administer a human growth hormone known as HGH that was extracted and collected from cadavers. This program was known as the Australian Human Pituitary Hormones Program, known as AHPHP.

The human growth hormone administered to these children was in fact the same hormone, human pituitary gonadotropin, known as hPG, that was administered to over 1,500 women and an estimated 60 men for infertility. Thanks to the member for Higgins, the tragic issue of the connection between hPG and the fatal disease of Creutzfeldt-Jakob disease has been recognised as a public health issue.

As well as being treated with hPG, unknown numbers of prepubertal and adolescent boys with a prediction of short stature were treated with synthetic androgens or steroids to accelerate their growth after being primed with hPG. This caused hypogonadism, including prostate disease, in unknown numbers of boys. This meant that these boys developed a permanent defective reproductive system resulting from a lack of function of the testes often accompanied by lack of sexual development and premature menopause. Those treated with hPG fell into two categories: those who were treated as ‘approved’ patients as part of an official program, and unrecorded numbers who were treated in the same way, using the same hPG, by medical practitioners who did not officially record details of patients they treated. These are referred to as ‘unapproved’.

The Allars inquiry established by this House to investigate the operation of the Australian Human Pituitary Hormones Program, conducted by Associate Professor of Law, Margaret Allars, is to be commended for its investigative work in relation to establishing the link between hPG and Creutzfeldt-Jakob disease and its recommendations to assist recipients, including compensation.

However, as the Allars inquiry states, the departmental database records 188 unapproved recipients, but only 28 per cent of those were able to be traced. The reality is that there is a high probability that there are many hundreds more than the recorded 188 unapproved recipients. As was stated in evidence in the Allars inquiry:

Some doctors have come clean and told the department, others haven’t. This is why there are bound to be a lot of unofficial people out there that doctors have treated like this.

I am raising this issue tonight because Mr Michael O’Meara, a constituent of mine, came to me seeking assistance in relation to hPG treatment he received as a boy. His treatment was unapproved, and as a result it has taken many years to access any information about this treatment. His search for information was reiterated by Professor Allars when she stated in her submission: ‘When recipients were asked at interview what they wanted from the government, the vast majority said they wanted factual information.’ They, like my constituent, need that vital information in order to understand why today, some 30 years after the initial treatment, they experience debilitating side effects that cause hardship in daily living and real anxiety about future prognosis. Those concerns go to the heart of this motion and underpin the reason I have brought these issues to the attention of the House.

We need to recognise that the many hundreds of unapproved male recipients like my constituent received the same treatment as those who were approved in receiving hPG treatment, that they suffer the same, if not worse, risks and side effects because they have been denied access to medical records and because they have been part of this hidden or non-existent list of unapproved recipients. They have never been included in any considerations, whether they be in counselling, appropriate treatment or financial compensation. Further, in spite of the Allars inquiry making a recommendation on further actions which government might take to identify people in Australia who received the pituitary derived hormones and to provide counselling and support to them, this has not happened.

I want to emphasise further that, following the Allars inquiry, the Senate community affairs committee reported on the CJD settlement offer that resulted from Allars. While the compensation is to be commended, neither the Allars inquiry nor the Senate committee acknowledged the other side effects of hPG treatment, which have resulted in castration, delayed puberty, induced puberty due to high doses of testosterone or hypogonadism. The government accepted the Senate recommendation stating:

That once it is established that a person did receive hPG or hGH from the AHPHP, the recipient’s status should be of no difference to that of approved recipients.

I strongly commend that Senate committee for making that recommendation to government and government for accepting it. But the point is that, in accepting this recommendation in relation to a link to CJD with hPG recipients, this acceptance should also be extended to other life-debilitating and life-threatening side effects of hPG treatment.

Let me give the House an actual example that my constituent has given me permission to speak of. My constituent was treated with hPG as a boy of 10 years of age. This resulted initially in a spontaneous onset of full-blown puberty. As treatment doses and frequency were varied, he was effectively castrated, with his testes so damaged that puberty was then delayed to such an extent that he was treated with anabolic steroids to induce puberty. This experimental nature of hPG treatment was exposed by Dr Wes Whitten, reproductive physiologist and former assistant director of the then National Biological Standards Laboratory. When giving evidence to the Allars inquiry, he said,

It was a shocking product, I can’t believe this had ever been marketed.

As a result of hPG treatment my constituent, as an adult, some 30 years later suffers from hypogonadism and requires three operations per year to keep him alive and reduce these extremely debilitating side effects. Every four months he has to undergo testosterone implants because, without these, his hormone level replicates that of a man over the age of 100. Mr O’Meara is just one of many hundreds treated with hPG who officially do not exist on any health department list and who suffer in silence.

I commend Mr O’Meara for his courage in being prepared to come forward and to provide me with very personal details in order to highlight the plight of so many others like him who justly, I believe, must be included in any government response to the ongoing needs of those whether approved or unapproved for treatment.

In the same way that approved recipients who were treated with hPG became victims of CJD and were recognised as being in need of counselling and compensation in some instances, so too do all the unapproved recipients need recognition of the treatment they received. This means that the spirit of Allars and the Senate committee must not just be adhered to; they must be implemented. There is simply no discrimination in the suffering experienced by both the men and women who were subjected to this treatment, and certainly no discrimination and suffering between those men and women who were approved under specific programs or those who were not approved. All who received hPG treatment and have suffered as a result of that treatment need to be recognised and supported. I commend this motion to the House and I thank my colleagues who have agreed to speak to this motion.

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