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

On behalf of the Standing Committee on Health and Ageing, I present the committee's report on adhesive arachnoiditis.

In accordance with standing order 39(f) the report was made a parliamentary paper.

The foundation of the report was a half-day roundtable held in September last year. I would like to thank the committee secretariat for their work in organising the roundtable and preparing the report for tabling and my fellow committee members for their contribution to the report, particularly the deputy chair, Steve Irons, the member for Swan, who was instrumental in the committee inquiring into adhesive arachnoiditis, and the previous chair, Steve Georganas, the member for Hindmarsh. I would also like to thank all those sufferers of adhesive arachnoiditis who shared their stories with the committee, which in many cases caused them considerable distress.

Adhesive arachnoiditis is a painful condition. It is associated with inflammation and scarring of the arachnoid membrane, one of the delicate membranes surrounding the spine. Symptoms include chronic pain, lack of bowel and bladder control, impaired sexual function and compromised reflexes. The presentation and severity of symptoms vary between individuals and over time. Restricted mobility and even paralysis are consequences for those most severely affected. In short, this is a horrific condition, a disabling condition and a condition that does not go away. There are a number of factors which, either alone or in combination, can trigger adhesive arachnoiditis. These include complications of bacterial and viral infections, degenerative back conditions and trauma due to injury and surgical procedures. A significant issue raised relates to the risks associated with exposure to a diagnostic agent used in Australia until the late 1980s.

The committee's roundtable provided a means to raise the profile of this little known condition, to highlight some of the major challenges facing sufferers and to identify options for providing practical assistance. There is no doubt that the physical, social and emotional impacts of adhesive arachnoiditis are real and catastrophic. At the roundtable, the committee heard how those living with this debilitating condition were much more likely to suffer from depression or seek relief from the constant pain through substance abuse. The committee also heard how the unrelenting pain had some sufferers contemplating suicide.

The stress of living with this painful condition is made worse for those who attribute their adhesive arachnoiditis to medical procedures that were in fact intended to relieve their suffering. The committee is aware that some sufferers have litigated, seeking compensation from medical professionals and from the manufacturers of the implicated diagnostic agents. The committee itself does not have the authority to investigate individual claims or to order compensation. In the context of corporate social responsibility, the committee has urged the relevant manufacturer to consider establishing a charitable foundation and engage with sufferers to determine how they can be assisted.

Diagnosis can be a lengthy and frustrating ordeal for sufferers. Adhesive arachnoiditis is a little known condition, even among health professionals. The committee heard how one sufferer was only diagnosed after recognising the symptoms herself after reading a newspaper article. Another sufferer was told for many years that she had fibromyalgia. For many sufferers diagnosis is more than just a label. It validates their experience and can provide a framework to help them better cope with the condition. The committee recommends awareness raising through education and training for general practitioners and health professionals working in pain clinics.

Unfortunately, there is currently no cure for adhesive arachnoiditis. Treatments are limited and largely revolve around managing pain. But the prohibitive cost of medication was raised at the roundtable. One participant told the committee how he needed to find more than $120 each week to cover the cost of pregabalin, a medication specifically for neuropathic pain. So I am delighted to confirm that from next month pregabalin will be subsidised and available through the Pharmaceutical Benefit Scheme. That is great news for chronic pain sufferers.

The committee also recommended that Medicare Locals and other health providers engage with adhesive arachnoiditis sufferers to optimise pain management. To establish an improved evidence base, the committee recommends support— (Time expired)

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

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.

Deborah O'Neill (Robertson, Australian Labor Party) Share this | Link to this | Hansard source

The time allotted for statements on this report has expired. Does the member for Shortland wish to move a motion in connection with the report to enable it to be debated on a future occasion?

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

I move:

That the House take note of the report.

Deborah O'Neill (Robertson, Australian Labor Party) Share this | Link to this | Hansard source

In accordance with standing order 39(d), the debate is adjourned. The resumption of the debate will be made an order of the day for the next sitting.