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

It is my pleasure to stand in this place and speak this evening briefly on the report that was tabled in the House when we last sat entitled Living with the pain of adhesive arachnoiditis. I want to take this opportunity this evening to put on the record a little information about this disease that is experienced by a number of Australians and is one about which many Australians would know very little.

It is a painful condition. It has actually got nothing to do with spiders, despite the fact that the word 'arachnoiditis' can conjure up that image. It is caused by long-term scarring of the arachnoid membranes. These are the membranes that surround and protect the nerves of the spinal cord and spinal nerves. This tissue can be scarred by medical intervention or infection and the spinal nerves stick together. The pattern they generate is a little like a spider web, hence the name 'arachnoiditis'.

The committee was very privileged to hear from sufferers of adhesive arachnoiditis. They explained to us some of the symptoms that they experience, including pain which often and most significantly affects their lower back and legs. It can lead to paralysis and certainly affects mobility. Further complications can include bladder and bowel dysfunction and impaired sexual function.

Many of the people who spoke to us said they experience this because of a treatment regime they had at an early stage of experiencing back pain. The drug Myodil was injected into their spinal fluid and they were then able to provide a contrast for radiography to be able to determine the status of their back. Myodil was eventually withdrawn from use. Better technology came along. The people who explained their experiences in testimony were very confident that it was that Myodil experience that had caused their adhesive arachnoiditis. The difficulty with this illness is that there is no clear causal link.

One of the recommendations that we made out of our roundtable inquiry and the report that we are discussing here this evening was that we raise more awareness about this issue. We made recommendations to the RACGP and Medicare Locals to try and increase the awareness of GPs about this issue. Michael Sage, a radiologist and emeritus professor from Flinders University, described it in this way:

Even if there are only a handful of people out there in each city suffering from it, they really are suffering. It is important that people are made aware even if it is too late—

to undo the difficulties and challenges that they face.

After this report was tabled in the chamber, a statement was released by GlaxoSmithKline, and I think it is important to read that response into the record. It states:

GlaxoSmithKline (GSK) has reviewed the final report of the House of Representatives Standing Committee on Health and Ageing into adhesive arachnoiditis …

The report makes a number of direct references to GSK, so it is important that GSK communicates its position on the report and related issues. Some of the points below reiterate information that GSK has previously provided in its public statements …

GSK indicated respect for the work of the committee and concern for the people affected by arachnoiditis. The committee thought they might be able to show considerable civic leadership and social responsibility by establishing a charitable foundation to find ways to assist those suffering adhesive arachnoiditis, but that is a recommendation that they were not happy to take up. I will leave my remarks there. Hopefully, we have raised some awareness.

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

I congratulate the member for Robertson on her contribution not only to this debate but also during the report consideration. It was one of the most moving roundtables that I have been associated with. It was a two-phase roundtable. In the first phase sufferers of adhesive arachnoiditis told their stories to the committee. Their saga, their journey, was an incredible one. It was a journey of constant pain. Their illness affected their mobility, their daily living, their employment and every single aspect of their lives. The one thing that each and every one of these participants in the roundtable had in common was that they had been injected with Myodil at the time that they were having investigations into the problems that they were having with their spine. So that was a common factor.

Adhesive arachnoiditis can be caused by things other than Myodil, but when we had this roundtable, the group of people that attended were people that had been injected, at one stage or another, with Myodil because at that time there were not the diagnostic tools that are available now. There were no CT scans, there were no MRIs, but they have subsequently replaced the injection into the spine of Myodil or Pantopaque. When it was initially injected, it was injected into the spinal fluid and left in the spine. Years later, when those patients underwent medical investigations, the oil was still visible in the spine. Later, when technology and knowledge improved, it was withdrawn from the spine, but even then many people who were suffering from spinal pain and spinal injury still ended up developing adhesive arachnoiditis.

I have pointed out how devastating and how life changing adhesive arachnoiditis is. I have talked about the process of the roundtable. I have talked about the first phase of the process of the roundtable where we had those people who were suffering from adhesive arachnoiditis come and talk to the committee. There were a number of tissues being passed around as both male and female sufferers of adhesive arachnoiditis told their story.

The second phase of the roundtable was having representatives of GlaxoSmithKline come along and give evidence to the committee in camera, so I cannot discuss any of the information that was presented there. They gave evidence to the committee. Subsequently, the committee made some recommendations as to how we thought the lives of people with adhesive arachnoiditis could be improved and how it could be handled better within the community and by medical professionals. I also acknowledge that Professor Sage gave evidence to the committee early in the piece where he came along and talked to the committee and explained adhesive arachnoiditis in the details that the member for Robertson has already shared with the House. He very definitely identified that some people who were injected with Myodil and Pantopaque developed adhesive arachnoiditis. That was very definitely identified, and there is medical evidence to support that.

One of the issues that was raised during the roundtable was the fact that there was a drug that did help to some extent, and that was Lyrica. I am pleased to share with the House that the drug has now been placed on the PBS list. That has the potential to make a real difference to people's lives because it makes it affordable. It is one of those drugs that actually works to relieve pain that is associated with nerves and nerve damage. That is a really positive outcome, and that actually happened before we even put a recommendation in our report; it was to be one of our recommendations that that be listed. So that is a really positive outcome that has happened.

We do need to raise awareness of this condition. We do need to make sure that not only medical professionals but people in the community know that there is such a disease as adhesive arachnoiditis. There are other issues that are associated with it as far as the knowledge base that doctors need to have and the role of the Medicare Locals and other health professionals can have in helping people who are living with arachnoiditis and chronic pain—helping them to develop strategies so that they can optimise the management of their chronic pain and get the best quality of life. That is recommendation 3 in the report.

Along with that comes the fact that people who are living with arachnoiditis need to be able to access aids and equipment to help them in their daily living so that they can adapt their lifestyles and minimise the level of pain that they have. This is a very, very painful disease, and it is something that has really changed people's lives irreversibly. This report recognises that people living with adhesive arachnoiditis have many barriers that they need to get around and that they have much that they need to cope with in their lives. These recommendations are recommendations that the committee feels very strongly about. I have to say that the recommendation that GlaxoSmithKline work to establish a foundation is one that has nothing to do with admitting any sort of liability. It has nothing to do with GlaxoSmithKline taking responsibility for the fact that people have developed adhesive arachnoiditis. We know that pharmaceutical companies often sponsor similar types of foundations or community activities. We thought that this would be a very community minded act that GSK could undertake. At the same time it would help so many people who have so much pain.

I am disappointed that GSK were not prepared to establish a charitable foundation. It is very disappointing, and we really felt that that was a way which could make a real difference in the lives of people who have been living with adhesive arachnoiditis for many reasons. As has been stated in this debate on a number of occasions, adhesive arachnoiditis is not only caused by the injection of Myodil but by many other sources—meningitis, tuberculosis, spinal injury, spinal surgery, bleeding from blood vessel abnormalities and chronic lumbosacral nerve compression. Then, of course, there is the Myodil and Pantopaque.

Deputy Speaker O'Neill, it was a pleasure working with you on the committee. As I said, previously you made an enormous contribution to this report and I thank you and everyone on the committee for the way that they addressed this issue, the way that they were prepared to work with people that are living with adhesive arachnoiditis. I would also like to put on record my thanks to the secretariat for the fine work that they have done.

Debate adjourned.