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

Russell Broadbent (McMillan, Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded?

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

I second the motion. Firstly, I congratulate the member for Swan for being a consistent campaigner to have this issue addressed. Adhesive arachnoiditis is one of the most painful and debilitating conditions that a person can have. It is not something that they were born with. Rather, it is something that, in many cases, occurred because they were having treatment for or seeking an answer to why they had back pain. Back in the 1970s, it was standard procedure to give a person a myelogram. When they had a myelogram, they had Myodil or Pantopaque injected into their spine. It has subsequently become well known that Myodil and Pantopaque cause arachnoiditis—not in everybody, but in a significant number of people.

So I join with the member for Swan in saying that GSK, GlaxoSmithKline, should have addressed this issue much sooner. Hiding behind lawyers does not resolve the issue; it does not get rid of the pain that these people living with adhesive arachnoiditis suffer on a daily basis. Their lives are turned upside down. They cannot enjoy the normal activities that a person has an expectation to enjoy. They have constant pain: pain in their back and pain in their legs. At the time that they undertook the myelogram with this oil based contrast medium that was used, the side effects were unknown and there was not enough research around the fact that side effects could occur. These side effects could have been mitigated if it had been removed. This was not done in many cases.

The round table that the committee held in September 2012 was one of the most moving round tables that I have been involved in. We had people who had been living with adhesive arachnoiditis for many years telling us about what it had done to their lives. At that particular time, Lyrica, a treatment that was available to a person who was a veteran, was not listed on the PBS. That has subsequently been listed, which helps to some extent. But it still has not got to the bottom of it. It still has not come up with any sort of cure for adhesive arachnoiditis or any sort of compensation—I dare to say compensation—for those people living with adhesive arachnoiditis.

I join with the member of Swan, too, in expressing my disappointment that GlaxoSmithKline has not established a charitable foundation to assist sufferers of adhesive arachnoiditis. This foundation would raise awareness of the condition and support research into adhesive arachnoiditis, which is needed, because you cannot get around the condition or come up with any sort of cure or any sort of proper response unless you undertake the research and look at ways that you can address this condition. It would also coordinate adhesive arachnoiditis support groups because support groups are needed. Not long ago, I visited a constituent who cannot get out of his bed. He is living in his bed. His only contact with people is with his family, and it is a very difficult situation. So there needs to be support. There needs to be representation made to the government to establish and maintain an Australian case register, which is really important. There is not enough information out there.

I have to say it is very disappointing that this report has not been implemented or properly responded to. This is an issue that is impacting on Australians' lives, and it is up to the government to respond to it, and it is up to GlaxoSmithKline to actually take some action to help all those people whose lives have been ruined.

Craig Laundy (Reid, Liberal Party) Share this | Link to this | Hansard source

Over the past couple of years of my being in this place, there have been many occasions when the member for Swan has raised issues with me which he is passionate about. I would like to congratulate him and the member for Shortland for moving this motion today. Over the last couple of years, the member for Swan has, on many occasions—too many to count—mentioned this particular cause of adhesive arachnoiditis and the devastating impact it has had on so many Australians, the vast majority of whom today are potentially undiagnosed. I would like to thank the member for Swan and the member for Shortland, acknowledging that, for the duration of this report and this study, their roles as chair and co-chair have changed, but they have been united in their pursuit of what the right thing to do is.

We take for granted that we stand in this place to speak. When we finish speaking, we walk back to our offices. What you are potentially talking about with sufferers of this disease is people like Mr Scott in the electorate of Swan; the doctors currently think it is a miracle that he can stand. As the member for Shortland said, she has a constituent who is confined to bed.

The two recommendations of the report that I would like to focus on are the responsibility of GlaxoSmithKline and the responsibility of us as a government to raise awareness of the potential for undiagnosed cases currently out in the community at large. GlaxoSmithKline is obviously a big pharma company with big resources and, as a result, big lawyers. But they have to acknowledge and own up, 'fess up, to their part in the role they have played in this and do the right thing. Instead of hiding behind lawyers, they have to deal with, as this recommendation says, setting up a charitable organisation. As the member for Swan said, they have done this on numerous occasions in the US. I call on them, like the member for Swan and the member for Shortland, to acknowledge their role in this and the onus on them to provide some sort of support for people who have been adversely impacted through medicines that they are responsible for.

The second major part of the report was the lack of broader community knowledge about the plight. I know that the member for Swan and the member for Shortland were contacted by sufferers. Some 30 years ago, when this was used as a treatment for x-rays, 250,000 people in total used the drug. Currently we have 60,000 listed as diagnosed to be suffering from it. Potentially, there are many out there who are suffering in silence and unaware of what they are suffering from. Why? Because as the report rightfully identified, there is such a low level of understanding on the frontline of our medical practices.

I would particularly like to point out the bodies which the report has said should be engaged and educated in an attempt to promote this cause to patients who are potentially undiagnosed. They are the Royal Australian College of General Practitioners, Primary Healthcare Networks, the Australian and New Zealand College of Anaesthetists, the Australian Research Council, the National Health and Medical Research Council and other healthcare providers. In fact, I would like to join the member for Swan in putting not only the financial responsibility back onto GlaxoSmithKline, but I would encourage them to enter into an education campaign that could be run through medical networks, so that resources could be made available and another potential reason for undiagnosed causes of pain could be proffered—when seen at the frontline by our wonderful primary healthcare physicians.

This is about doing what is right. We all have the right to stand and walk around at the end of what we would have considered in those days a standard medical procedure. GSK is fully aware of the adverse impact this drug has had. I call on it to make right what is wrong. I commend again the member for Swan and the member for Shortland for their unending pursuance of what is right.

Laurie Ferguson (Werriwa, Australian Labor Party) Share this | Link to this | Hansard source

I was first referred to the issue of adhesive arachnoiditis by a visit from constituent Pamela Romano of Ingleburn. Having undertaken a myelogram in 1972, she was later to endure severe low back pain, leg pain, numbness and chronic pain in the legs and feet, a burning sensation, and bladder and bowel dysfunction, leading to a failed back operation at a later stage. I note the recent recommendations by the roundtable: the need for more information and advocacy that the Australian College of General Practitioners and Medicare Locals provide practitioners with information, that the Australian government through the Australian Research Council supports research projects et cetera. However, I think the fundamental issue is the conduct of GlaxoSmithKline.

It is not as though this is a recent phenomenon. In 1948, Sweden banned the use of this product and a significant number of other countries followed. It is not as though it is raised for the first time in this parliament by the member for Swan. Back in 2002, the then member for Throsby, Jenni George, raised this same issue in this parliament. We have seen GlaxoSmithKline utilise a barrage of lawyers, who are paid expensive remuneration, to fight against these victims. It was very timely on the weekend when I noticed an article in the Saturday newspaper on the Baryulgil community of northern New South Wales who endured the same sort of attitude from James Hardie, a company thinking that the Indigenous workers would die off and basically that the matter would go into history and no-one would be properly compensated.

In regard to the resolution by the then member for Throsby, which has been crucially followed by the member for Swan since then, I note the point was made that:

In October 1994, the then federal minister responsible for therapeutic goods in this country advised the New South Wales minister as follows:

Myodil was a contrast medium used mainly for myelography ... It had a number of adverse reactions; arachnoiditis being one of the more serious.

As it was in use before the Commonwealth began to evaluate drugs of this class, it was never evaluated by the Therapeutic Goods Administration for efficacy and safety.

That is quite amazing. What we do know, however, is that the company which imported and distributed Pantopaque/Myodil was advised by the therapeutic goods branch in June 1978 that it was involved in `unauthorised distribution' which `has not been restricted to the “approved end users” but, apparently, has been supplied to all parts of the Commonwealth'.

There were questions about the use of this product for decades but the company blithely went ahead. As far back as 2008, Dr Dennis Cordato commented:

I am of the opinion that there is a causal link between this and a substance known as myodil … the inflammation of the arachnoiditis membrane covering the spinal cord and brain.

In 2005—quite a few years ago—Mark Colvin on PM quoted Marcus Stoodley, a neurosurgeon at the Prince of Wales Hospital who said:

It is now medically accepted that Myodil is associated with the subsequent development of arachnoiditis.

I have detailed the complaints that my constituent has endured. Clearly there is a large number of sufferers in this country. Clearly GlaxoSmithKline should, very late in the day, take notice of this recent series of recommendations to utilise some of their money to 'raise awareness, support research, coordinate support groups, make representations to government to establish and maintain an Australian case register'.

Clearly over time there have been significant indicators that this drug has caused massive problems. Countries would not have banned it if there were not an issue here. Quite frankly, they have had the clear attitude of hoping that they can battle it out, that the number is not that large, that interest is sporadic, although maybe by a few members of parliament more longer term, and that the media occasionally, every four or fix years, might raise it. For people like my constituent, clearly their entire existence has been very severely restricted. This woman has great difficulty in moving around, she is emotionally very distraught over the issue and has undertaken an operation which failed, has found a great degree of disinterest and a great degree of aggravated opposition from GlaxoSmithKline. I very much join with the mover of the motion and the seconder in supporting this motion.

Debate adjourned.