Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

I second the motion. Firstly, I congratulate the member for Swan for being a consistent campaigner to have this issue addressed. Adhesive arachnoiditis is one of the most painful and debilitating conditions that a person can have. It is not something that they were born with. Rather, it is something that, in many cases, occurred because they were having treatment for or seeking an answer to why they had back pain. Back in the 1970s, it was standard procedure to give a person a myelogram. When they had a myelogram, they had Myodil or Pantopaque injected into their spine. It has subsequently become well known that Myodil and Pantopaque cause arachnoiditis—not in everybody, but in a significant number of people.

So I join with the member for Swan in saying that GSK, GlaxoSmithKline, should have addressed this issue much sooner. Hiding behind lawyers does not resolve the issue; it does not get rid of the pain that these people living with adhesive arachnoiditis suffer on a daily basis. Their lives are turned upside down. They cannot enjoy the normal activities that a person has an expectation to enjoy. They have constant pain: pain in their back and pain in their legs. At the time that they undertook the myelogram with this oil based contrast medium that was used, the side effects were unknown and there was not enough research around the fact that side effects could occur. These side effects could have been mitigated if it had been removed. This was not done in many cases.

The round table that the committee held in September 2012 was one of the most moving round tables that I have been involved in. We had people who had been living with adhesive arachnoiditis for many years telling us about what it had done to their lives. At that particular time, Lyrica, a treatment that was available to a person who was a veteran, was not listed on the PBS. That has subsequently been listed, which helps to some extent. But it still has not got to the bottom of it. It still has not come up with any sort of cure for adhesive arachnoiditis or any sort of compensation—I dare to say compensation—for those people living with adhesive arachnoiditis.

I join with the member of Swan, too, in expressing my disappointment that GlaxoSmithKline has not established a charitable foundation to assist sufferers of adhesive arachnoiditis. This foundation would raise awareness of the condition and support research into adhesive arachnoiditis, which is needed, because you cannot get around the condition or come up with any sort of cure or any sort of proper response unless you undertake the research and look at ways that you can address this condition. It would also coordinate adhesive arachnoiditis support groups because support groups are needed. Not long ago, I visited a constituent who cannot get out of his bed. He is living in his bed. His only contact with people is with his family, and it is a very difficult situation. So there needs to be support. There needs to be representation made to the government to establish and maintain an Australian case register, which is really important. There is not enough information out there.

I have to say it is very disappointing that this report has not been implemented or properly responded to. This is an issue that is impacting on Australians' lives, and it is up to the government to respond to it, and it is up to GlaxoSmithKline to actually take some action to help all those people whose lives have been ruined.

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