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    Good news that Nicola Roxon’s Chief Health Advisor is moving on. This is how he and his counterpart responded to what can be done about the 500 young lives lost in Australia every year to Sudden Cardiac Death (SCD) in the Young, at the Senate Estimates on 23/2/11. SCD relates to the teenagers and young adults that suddenly drop dead on sporting fields, schools and in their homes. Both “Advisors” were clearly clueless despite the Federal Govt spending $24 million dollars in research over the last 10 years on the issue. Perhaps the Govt should look at just what can be achieved with the right medical advice and political will. –

    Source – Pages 119 and 120

    Senator SIEWERT—I wanted to ask you about sudden cardiac arrest in young people. I have had correspondence about it and I have also seen some issues about it. There has been a bit of attention given to the issue. I am wondering: is it an issue that the department is aware of? Have you been looking at any statistics on it?
    Ms Halton—We have our own expert. He can start.
    Prof. Bishop—I am not an expert. The important thing about screening relates to whether in fact this can be screened for. It can be difficult. There is a methodology in relation to screening that has got to show that by introducing something you can show an overall reduction in mortality. It has to be of a sufficient amount to essentially justify a larger program. That is a basis on which screening things are set up. They are set up specifically on the basis of being able to show mortality reduction at a population level. While I think we all understand the individual case, I think screening is quite a different methodology. Dr Singer may like to take this a little bit further.
    Dr Singer—Thank you. I do not know whether the Chief Medical Officer knows more than I do, but I am not aware of a particular screening test for this condition. There certainly are a number of tests I would regard as potential candidates. They would not be economically viable for this kind of thing over a population level.
    They are fairly extensive tests that would need to be done.
    Senator SIEWERT—In terms of the potential screen techniques, do you say that they are expensive or do you not think there is actually a screening technique?
    Dr Singer—I am not aware of a screening technique that is available for this condition, but as I said there are a couple of potential candidate screening tests. They are not really screening tests; they are diagnostic tests and they are not cost-effective in this setting.
    Senator SIEWERT—I have seen wildly varying differences on how many people could potentially be affected and how many people have died as a result of this. Has the department looked at how many people have been affected by this?
    Dr Singer—Not to my knowledge.
    Senator SIEWERT—How do you know it would not be cost-effective if you do not know how many people have died as a result of this? I am not trying to be smart; I am just—
    Dr Singer—I understand. My understanding is that this is a relatively rare condition.
    Senator SIEWERT—Okay. What counts as ‘relatively rare’?
    Dr Singer—I am not in a position to give you an exact figure, I am afraid.
    Senator SIEWERT—Okay.
    Dr Singer—But certainly this is one where the other problem with it is that it is not a single pathological condition. It is more a syndrome in that it is something that happens, but there are a number of potential causes for it. So, as a result, usually the only way that you can identify the problem is to actually show an abnormality in the cardiac rhythm and that, I would expect, would require something like an electrophysiological study, which is a fairly invasive study and certainly is not a candidate for population screening. Simpler tests that might be a candidate, such as, for example, an electrocardiogram, do not identify cases with any reliable sensitivity. That is the main issue.
    Senator SIEWERT—It seems to be the cases that you hear reported are associated a lot with young athletes.
    Dr Singer—That is true, yes.
    Senator SIEWERT—Is there a potential role for awareness raising or highlighting this for young athletes.
    Because I do not know much about it—you said there are a number of causes—I do not know if that is going to work anyway or if there is anything you could do about it.
    Dr Singer—There certainly has been a reasonable amount of attention paid to this in the international literature, particularly in the US where it has been a fairly popular—that is not the right word—issue where some attention has been paid, and certainly some of the American based medical journals that I read, such as the New England Journal of Medicine and Annals of Emergency Medicine, certainly have highlighted cases where this has been an issue. Yes, I guess there is potentially the opportunity for raising awareness amongst health practitioners in this, but certainly anyone who reads the literature would be aware, anyway.
    Senator SIEWERT—Thank you.

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    The subject of Sudden Cardiac Death in the young is a subject close to my heart having experienced the loss of a son to SCD. The figure of 500 deaths a year is a conservative figure and isn’t far behind the UK who have three times our population. The reason for this is the rest of the world are being made aware of the problem but Australian parents are being kept in the dark.

    I had read the Hansard referred to in the previous comment and couldn’t help but be offended by the lack of knowledge, or seeming lack of knowledge, of these professional medical personel. They jumped straight to the unviability of of publicly funded screening program and didn’t even touch on the potential value of an awareness and preventative initiative. I can only think Professor Bishop was already in retirement mode and didn’t want to get involved with this issue.

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    Re Truth

    Advocacy is all very well and I have my fair share of problems with DOHA advice, but I think you are being unreasonably hard on Drs Singer and Bishop having read the transcript. What Dr Singer is saying is that diagnostic tests do not neccessarily, or even often, make good population screening tests while freely admitting he does not have detailed epidemology on the disease in question. This is sound public health advice, and we would have better screening programs if it was better understood. As for $24 million dollars – well I guess no-one can know all the programs in a budget which is north of $40 billion dollars. The problem is that Senators often raise questions out of the blue, and no advisor can be expected to have all the answers all the time. While I don’t necessarily object to advocating the need to raise the public profile of uncommon syndromes, to do it by impugning the professionalism of the medical advisors involved is just mean spirited and, given their calibre, uninformed.

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    Re: Altakoi

    Uninformed I don’t think so. Once you have lost a teenager who was fit and healthy one minute and suddenly drops dead – you tend to inform yourself. The facts are 12 young people die from Sudden Cardiac Death each week over 500 hundred a year. If you think that is rare – that a young life is lost with no chance of treatment or survival well I guess you have a different view on the value of life than what I do.

    The fitter they are the greater the risk.

    Maybe tell the family of this young man lost yesterday that it’s rare – this is what is happening every day all over the country.

    The figures are undeniable – Nicola Roxon doesn’t deny them because that’s where the $24 million dollars has gone over the last 10 years – “research”. Yet the Government remains totally silent on the issue providing no opportunity for parents to protect their youth who are most at risk and there are plenty of risk control strategies that can be instigated. Awareness would be a start.

    The Government however continues to plough more and more money into lifestyle risk factors to prevent heart disease from presenting in older people (obesity, smoking ect – we know already). The bottom line is when a young person drops dead suddenly it costs our health system nothing.

    Australia continues to be totally silent on the issue unlike other non third world countries. You obviously didn’t look at the CRY Website that shows what can be achieved with the right medical advice and political will.

    I doubt very much that the Doctors were not put on notice about why they were at the Committee – certainly the Hon Nicola Roxon has had to respond to numerous requests from MP’s asking questions as to why there are no basic awareness or preventative strategies to prevent this tragic loss of young lives. The majority of conditions can be picked up by an ECG which costs the MBS around $20 and takes three minutes. So if Nicola Roxon hasn’t been getting her advice from her Chief and Principal Medical Officers I wonder where she has been getting it from.

    Dr Singer said it was relatively rare but didn’t actually know – well perhaps he can refer to one of his own Department’s Documents contained on his Department’s website regarding one of the conditions – Hypertrophic Cardiomyopathy – this condition alone affects 1:500 and states that the condition is not rare and is considered to be the most common known genetic cardiovascular disease.$File/Update%20Aug%20Vol%2017%20-%20HCM.pdf

    The Doctors clearly didn’t know what they were talking about so why go on with it. Waffling on about electrophysiological study as the only way up picking up the electrical problems was a complete joke. He was clearly making it up as he went along why not be up front and say “we will need to get back to you on this subject”. Sorry Altakoi just because they have Professor or Doctor in front of their name doesn’t allow them to give inaccurate and ill informed information on an issue that is costing young lives every day, information that’s going on the public record and that some people like yourself may actually believe. It’s a bit like you can fool some of the people some of the time…….

    If you think I’m being mean spirited by expecting our Commonwealth’s leading Doctors to discuss the issue with some degree of professionalism maybe have a look at what SCD in a young person from Hypertrophic Cardiomyopathy looks like.


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