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

I move:

That this House:

(1) recognises that thousands of Australians received a spinal injection of the chemical dye Iophendylate (marked as Pantopaque and Myodil) and that many now suffer from the painful disease adhesive arachnoiditis;

(2) acknowledges the recommendations in the report Living with the pain of adhesive arachnoiditis: Report on the roundtable into adhesive arachnoiditis presented by the Standing Committee on Health and Ageing on 11 February 2013 and calls for all recommendations to be implemented; and

(3) encourages all Members of Parliament to be aware of the condition and support members of their community suffering from adhesive arachnoiditis.

I move this motion today with the strong support of the member for Shortland, my colleague the member for Reid and also the member for Werriwa, who are all going to speak to it.

This House needs to continue to hear about this issue as there is still much that must be done to support the sufferers of adhesive arachnoiditis. In 2011, I brought this disease to the House's attention through a speech. I note that I was not the first member to highlight this crippling disease in the parliament. I know that Jenny George, the former member for Throsby, tried back in 2003 to bring this disease to the attention of parliament through an inquiry. It was great that in 2011 we could get the then Standing Committee on Health and Ageing to do that. Again, I would like to thank the members in the chamber today for highlighting its importance and beginning what has become a very long but much-needed battle on behalf of those suffering with the debilitating disease.

Our efforts back then led to a House of Representatives standing committee report Living with the pain of adhesive arachnoiditisand a number of significant recommendations. I was deputy chair of that committee at the time and the member for Shortland, who is in the chamber, was the chair. We have not had success in having these recommendations implemented in their entirety. They should be implemented without delay. The first and foremost recommendation of this report encouraged GlaxoSmithKline to consider establishing a charitable foundation to assist sufferers of adhesive arachnoiditis, by raising awareness, supporting research and managing cases around Australia.

Almost three years on from the report's publication, I would like to express my disappointment in GlaxoSmithKline for their inaction and continued avoidance of the responsibility. The company has the means to provide what would have been the most modest of support to the unfortunate victims of the chemical in the contrast media but instead has chosen to look the other way. As we know from their US website, GSK are very generous to some of the foundations that have been set up, and it would have been fantastic if they would set up the same in Australia. So much pain is caused by the disease but more pain and heartbreak is caused by the lack of recognition by GSK. It can never be put right, but a small gesture like establishing a foundation would go a long way to assist sufferers.

In response to the recommendations made by the committee, GlaxoSmithKline said:

We believe that it would not be appropriate for GSK to be responsible for establishing a charitable foundation as recommended by the committee.

I think this is a bad decision by GSK and I am sure committee members would agree with me. I ask GSK to reconsider and I say look to your hearts and not to your lawyers. Their lack of corporate social responsibility only extends and prolongs the frustration, desertion and isolation felt for decades by sufferers of the debilitating disease.

I note that the three further recommendations in the report focused on raising awareness of the condition. Today I will be instructing the secretariat of the Standing Committee on Health to write to all the organisations mentioned in these recommendations to ascertain progress made since the recommendations were tabled, namely the Royal Australian College of General Practitioners; Medicare Locals, now Primary Healthcare Networks; the Australian and New Zealand College of Anaesthetists; the Australian Research Council; the National Health and Medical Research Council; other health providers and, obviously, GSK.

It is incredible that sufferers still contact my office—and I know they contact other members as well—to tell me that doctors and GPs are unaware of the condition's existence. Imagine how frustrating that must be when you go to a doctor with all these issues and they cannot give you a diagnosis. That is why it is particularly important that part 3 of this motion be agreed to by the House. As members of parliament, we need to provide understanding and support to sufferers in our communities.

On a more positive tone, I would like to mention my constituent Mr Max Scott, a sufferer of adhesive arachnoiditis and the first person to bring this issue to my attention more than five years ago. It was my meeting with Mr Scott in 2009 that instigated my push for adhesive arachnoiditis to be looked into by the then Standing Committee on Health and Ageing, during which Mr Scott appeared as a witness. Recently, Mr Scott contacted my office again and told me that he was able to stand up for the first time in a long time. He still cannot walk but just standing has made a big difference to Mr Scott. The doctors cannot explain it and have called it a miracle. Again, I want to thank Mr Scott for his courage in dealing with this debilitating disease and for the vital role he has played over the years in getting adhesive arachnoiditis recognised and debated on a national level.

We must now push forward and continue to fight for these recommendations. Many Australians are relying on our efforts. Thank you.

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