In 1970 my mother recieved treatment in order to assist in fertility, via the Human Growth Hormone (Hgh) program, as administered by the CofA and CSL. The treatments were succesful in regerds to fertility, and she gave birth to me (Jason Bansemer) on March 9, 1971. Life continued as usual.
In 1994 my mother was informed by the Department of Health (DofH) of the risk of CJD that had been directly associated with the Hgh program. The news was taken seriously, but was not percieved by us as a very real threat. Life continued as usual.
In July 1997 my mother developed symptoms of dementia and speech difficulties. Upon taking her to a G.P., we were referred to a nuerologist at the Royal Adelaide hospital (RAH), who diagnosed mum as "most-likely" suffering from CJD, as a definitive diagnosis cannot be made prior to death. This diagnosis was made via extensive scans and tests which failed to offer any other possible cause, and given that mum was a known recipient of Hgh it was concluded that CJD was the cause. She has been given 4 months to 2 years life expectancy. A second independent neurologist also examined the test results to arrive at the same diagnosis. The results were then sent to the panel established by the DofA to assess the validity of such claims, this panel also agreed with the diagnosis. As a direct rsult, compensation was settled in relation to loss of pleasure in life, loss of income etc. and access to the Trust Fund was established by the DofH with the purpose of covering related care costs until the time of death. Needless to say, life was not continuing as usual.
In March 1998, the DofH saw it fit to renege on their decision to provide access to the fund, demanding a definitive diagnosis in order to re-establish access. A definitive diagnosis before death remains to this day a pure impossibility given our current medical knowledge and technology. The only definitive diagnosis that can be obtained is after death, upon autopsy. The same panel that accepted the diagnosis, now sees fit to alter the rules as they go along, demanding further tests. The only outcome this would serve to acheive is to subject my mother to further discomfort in what little life she has remaining. Hence we find ourselves in the current situation as detailed within the other pages of this site.
I would like to continue by providing my thoughts and opinions on all we have encountered thus far. I must reaffirm that the comments are of a personal nature and opinion only, given this, the comments herein may cause offence to some individuals and organizations, but this is unavoidable given the personal nature of the views expressed.
The CofA has managed to miss the point entirely, by focusing purely on the CJD and financial aspects of this case they have neglected the fundamental issues that arise due to their administration of the Hgh program. The fundamentals as I see them are as such:
The CofA consistently overlooks the importance of these issues, not just in relation to our circumstances, but also as it relates to public health as a whole. There can be no argument that the CofA was and still is guilty of fundamental human and civil rights abuses. They saw it fit to play God with the lives and health of the Australian public. A government is supposed to exist for the people, not in spite of them and must be held accountable for it's actions and decisions, whether past or present.
Let's address the government actions as they relate to this particular situation as it stands today. The DofH has consistently refused to give us access to the files relating to the hormone that was administered to my mother. As a recipient of that hormone she has a right to have access to that information. The DofH has never approached us in a helpful manner, instead delaying all actions until such a time that we are able to build significant pressure, and thereby forcing them into action. It is an absurd situation when it is us who have to fight, when it appears that the recipients are the only innocent parties in this matter. My mother was victimised by the CofA and they continue to disrespect us and to abuse my mothers rights even further. The CofA is forever demonstrating the power it has at its disposal in this matter, as demonstrated by its actions thus far. It even appears that the court system is directly influenced by the government, in so much that a different set of judicial rules applies to the government than those that exist for civilians. So much for the unbias nature of the courts.
The government has lost contact with its public. These people elected into power are not godheads (although they act as such), they are normal people just like you and I, just with a different job to do and it is high time the wall was removed that seperates us from them. They have been deliberately evasive and diversive, with little or no humanity or compassion.
As the public it is up to us to hold those in power responsible for their actions, otherwise there is a threat that we shall become one of those oppressed countries that the government so readily condemns. The only difference here is in the delivery, instead of blatant and obvious oppression our government seeks to acheive a similar abuse of power through manipulation, diversion and extensive use of power plays. The government has a duty of care to the public and has no right to subject the public to obvious and unneccessary risks. This issue must be addressed in the public interest, for if these actions continue, Australia is at the very real risk of encountering a completely avoidable health crisis of epidemic proportions. If this arises due to similar events it could be seen as nothing short of genocide on behalf of the CofA.
We request your support in this issue. Please e-mail us with any opinions and/or comments you have to offer, or feel free to write to your member of parliment expressing your concern.
Posted by: Jason Bansemer.