Jill Hall (Shortland, Australian Labor Party) Share 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)

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