Living with the pain of GSK’s Myodil

As Deputy Chair of the House of Representatives Standing Committee on Health and Ageing, I rise to respond to the chair’s statement on the report Living with the pain of adhesive arachnoiditis: report on the roundtable into adhesive arachnoiditis. I start with the following statement:

Our guiding principles are to focus on patient needs, respect people, communicate honestly and act with integrity. We are bound by a promise to keep our customers at the heart of everything we do. We do this work in partnership with Government, industry, the community and our peak industry association,

Any suffers of adhesive arachnoiditis will recognise this motherhood statement taken from the GlaxoSmithKline website. GSK is the company that released the Myodil and Pantopaque products into the medical world, which are a cause of the condition known as adhesive arachnoiditis, described in the report as a painful condition. We heard the chair say in her statement that this is a horrific condition.

The report states that the committee very much appreciates the contributions of all participants to its inquiry. The roundtable made clear to the committee how debilitating adhesive arachnoiditis can be to sufferers. The committee very much sympathises with and hopes that the recommendations of the report will help to improve the quality of life for sufferers and their families and carers. I particularly mention Mr Max Scott from my electorate of Swan, who first brought to this terrible condition to my attention. I also thank Mr Joern Hagemann and his daughter and carer, Mrs Erika Zorzit, who both came to visit me about Mr Hagemann’s condition. Their visit gave me the extra impetus to cajole, urge and convince the Standing Committee on Health and Ageing to commit to a roundtable and I thank my fellow committee members for their support in agreeing to the roundtable.

In particular I thank Steve Georganas, the previous chair, and Jill Hall, the current chair, both of whom played their part in getting this roundtable up. I thank the secretariat for their work on this difficult report as I felt there was a level of trepidation in dealing with this subject due to the long litigious history of the subject and the ongoing litigation. Thanks must also be given to the previous member for Throsby Jennie George for tackling this issue back in the early 2000s with the support of Jill Hall.

I also mention Mr Jonathan Martin from my office who spent a considerable amount of time dealing with sufferers and providing me with valuable research. His efforts should not go unnoticed by the people who read this report. During my time involved with the forgotten Australians apology more than three years ago, the comment that the Leader of the Opposition at that time, Malcolm Turnbull, made in his speech when he said, ‘We believe you,’ was, for many people, a significant moment. I think the same significance could be taken by arachnoiditis sufferers from the comments made by Professor Michael Sage, a radiologist, when he stated:

I believe that the most common cause of chronic arachnoiditis is Myodil, and most people have been suffering for 40 years. … These people have suffered, mainly because we were using a dye, Myodil, with no alternative. … there was a gradual recognition—with poor literature, I might say—that there was a problem. A needle was introduced to allow us to suck it out; the problem was that it was often impossible to suck it all out anyway. The bottom line was that, if there was some alternative, we should not have been putting it in. I was very concerned about this.

The report’s recommendation 1 goes back to the first part of my statement that was taken from the GSK website. This recommendation’s first paragraph states:

In the context of corporate social responsibility the Committee encourages GlaxoSmithKline to consider establishing a charitable foundation to assist sufferers of adhesive arachnoiditis.

This is a decision that only GSK can make. However, if we are to believe all the motherhood and community caring messages stated on their websites around the world, we can only hope that they honour these statements. If they do not act, their response to this recommendation will give us a true indication of GSK’s real community concern. In the report there is a comment that states there is an acceptable failure rate of 10 per cent for people who contract arachnoiditis from a myelography. I ask: would that be an acceptable failure rate for a motor vehicle manufacturer? The clear answer is no. My experience with manufacturing is that a one per cent failure rate is acceptable before they have a recall. I encourage people to read this report and again thank all the people who were able to finally have this debilitating condition brought to public awareness through this report. I commend this report to the House.


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