Monday, 16 June 2008
Private Members’ Business
I start my speech by saying that while listening to the member for McEwen one could not be other than moved by hearing the personal story that came from one of her constituents. Such personal stories put faces to these sorts of problems and make debates more than just talking about facts and figures. I commend the member for bringing this motion on hormone treatment before us this evening.
This motion recalls a very unfortunate period in Australia’s medical history. Between 1960 and 1985 several thousand Australians receive hormones derived from pituitary glands taken from people who had passed away. The hormones were used to treat children with growth problems and to assist in treating infertile women. In 1985 a link between cardaveric derived hormones and CJD was recognised, and the use of cardaveric derived hormones was stopped. Synthetic human growth hormone, which was developed in the early 1980s, and follicle-stimulating hormones derived in other ways then came into widespread use. A number of Australian recipients of pituitary hormones died from CJD in the late 1980s and early 1990s. The last recipient to die from CJD did so in 1991.
In May 1993, the then government asked Professor Margaret Allars from the University of Sydney to carry out an independent inquiry into the use of human pituitary derived hormones in Australia and CJD. In responding to the findings of the inquiry, the government, in November 1994, announced a number of programs including funding for ongoing counselling and support services for human pituitary hormone recipients and their families, funding for the medical and other care needs of human pituitary hormone recipients who had contracted CJD, funding for commissioned research in Australia to assist in developing a diagnostic test and treatment for the disease and for further epidemiology research, and funding for continued information activities including a free 1800 number, medical advice and HPH Newsletter.
The government subsequently made a settlement offer to recipients which included compensation for any psychiatric shock suffered by the recipients, as they were told that they were at increased risk of contracting CJD. The settlement offer was examined by a Senate committee of inquiry which reported in late 1997. One of the Senate committee’s recommendations was:
... the Department allocate resources to tracing unapproved recipients of human-derived pituitary hormones.
In response, the government, in March 1998, noted that the then Department of Health and Family Services was investigating strategies to identify unapproved recipients of the hormones and to trace the remaining recipients. The government noted that information about unapproved recipients was only available in the records of doctors who had been providing treatment under the program and that the department would need to contact each surviving treating doctor, requesting their further assistance in identifying unapproved recipients. I understand that this work was carried and that, as far as the department has been able to determine, 96 per cent of those patients have been traced. All patients, both approved and unapproved, were given an information package about the compensation available and were invited to apply for compensation for psychiatric shock if they believed they met the criteria. Two hundred and sixty-five recipients applied and $3 million was distributed to them. There was no distinction between male and female recipients and between unapproved and approved recipients in the compensation that had been made available—and that is a good thing.
The pituitary hormone trust account established in 1994 remains with a balance of almost $4 million. While the counselling services funded from the account were wound down in 2005, two years later than recommended by Professor Allars, pituitary hormone recipients can still access funding by contacting the Department of Health and Ageing, and that is something they should look at.
I think perhaps the saddest aspect is that this treatment went on for 25 years. Often I think with medical science we rush for the miracle cure too quickly; we do not spend the time and the research that are required to make sure that these products, these new methods, are safe. It is absolutely vital that in the future we do not go down this same path again and have the same sorts of very sad speeches being made in this place and around the country because we have rushed to a cure that turns out not to be a cure but an absolute curse. I commend the motion.