Sunday, February 20, 2011

Response from The Hon Nicola Roxon MP, Minister for Health and Ageing in relation to Sudden Cardiac Death (SCD) in Young People in Australia.

Ms Roxon was provided with most of the information provided on this site including the tragic details of the SCD of a teenager who died after a sporting event. A tragedy that occurs to 12 Australian families each week. Over 500 young Australians each year, yet there is a total lack of preventative strategies and basic awareness to protect our youth who are at risk. Ms Roxon is fully aware of the prevalence of SCD.

Perhaps Ms Roxon should see the horrendous tragedy of SCD – a scene that is played out in our schools and sporting fields. Scenes that will never be erased from those that witness the reality of SCD in a young person. WARNING – those that have experienced this tragedy should not view this.

Reality of SCD from Hypertrophic Cardiomyopathy.

The following is her position and our response.

1. Ms Roxon:
The Australian Government provides assistance for pathology services, medical procedures and technologies through the Medicare Benefits Scheme (MBS). The MBS funds a range of tests that might be used by clinicians who suspect that a patient or the relative of a patient has a cardiac disorder. These include echocardiograms, cardio echo and angiography.

• Ms Roxon has chosen to ignore the fact the SCD affects the young, fit and healthy, in particular those reaching puberty to mid twenties and of course young athletes. So if there is no awareness about SCD and cardiac risk in our youth who would think to have the above tests undertaken?

• Symptoms can be absent altogether, mild and often mistaken by GPs for other things – the many young ones who die suddenly are a testament to this. GPs are ill informed and parents will miss the signs, if any because the young people look so well and usually perform at a high level.

• It is only the few that present with significant and obvious signs who will be identified by GPs and benefit from the MBS tests – hence the term “Sudden” because the death comes without warning”.

2. Ms Roxon:
The Medical Services Advisory Committee (MSAC) provides comprehensive, high quality advice to the Australian Government on whether new and existing tests and procedures warrant funding through listing on the MBS. The MASC has recently agreed to evaluate for public funding genetic tests for Long QT syndrome, which is one of the causes of Sudden Cardiac Death in Young people.

• How does the MSAC agreeing to “evaluate” genetic tests for just one of the conditions that causes SCD in young people constitute an awareness and preventative strategy to stop young people from dying now.

• The availability of this genetic testing, if it actually eventuates will be for the benefit of family members that have already lost someone to Long QT or who have been diagnosed with Long QT. It SHOULD be funded. Along with genetic testing for all of the genetic cardiac disorders, particularly HCM which is the most prevalent.

• But this is not a preventative initiative nor will it be available for the broader community i.e. those at risk now and the Minister knows this.

3. Ms Roxon :
Unfortunately, specific funding is not available for a national screening and prevention program. The Government receives numerous requests for funding and increased action in relation to many conditions and programs however it is not possible to meet all of these requests.

• A number of proposals were suggested for Ms Roxon’s consideration the very least of which was that parents and young people be provided with information in relation to SCD so that informed decisions can be made by parents and young people.

• I’m sure Ms Roxon receives many requests but how many does she receive that states that over 500 hundred young people ( backed up by Federal Government Funding research) will die suddenly, no second chance and no opportunity for treatment or a chance of survival.

• Ms Roxon chose to be a Member of Parliament, accepted the portfolio as Minister for Health, and accepts her position in society and the many benefits that come with it so she should also accept the challenges of her position and her responsibility to young Australians.

• SCD in young people is not a new phenomenon research has been going on across the world for 40 years. At what point will the Government share their awareness with ordinary Australians, clearly the 500 certain deaths a year is not considered important enough to warrant action by the Department of Health. Perhaps she should talk to some affected families.

• The Government continues to commit funding to yet more and more awareness programs for cardiac risks which relate to older people and lifestyle factors: obesity, smoking, ect yet is dismissive about our active youth who are dying now.

• The sad reality is, when a young person dies suddenly there is no cost incurred by the Government. This is obviously a consideration for the Government when choosing to be inactive about awareness. But the cost to young ones that lose their lives to SCD, their family and our society is immeasurable.

4. Ms Roxon :
The Government recognises the importance of research, and has allocated more than $24 million for cardiac arrhythmia since 2000, through the National Health and Medical Research Council. Research efforts in this area are a valuable first step in better understanding and addressing SCD.

• Research has been going on in Australia about a known problem for 11 years and has received $25 million dollars in funding from the Federal Government. Ms Roxon describes this as a valuable first step. During this first step over 5000 young people have died. How long will it take the Federal Government to get to the second step of a simple awareness campaign.

• It is shocking that the Government has been funding research for 10 years, during which time the researchers must be putting up a very good case for funding which of course is the high prevalence of young people dying suddenly. Yet no resources have been put into an awareness program of any kind to prevent the loss of young lives now.

• SCD in Young People is not new – hence the programs that are already in place throughout the world to address this tragedy.

• Ms Roxon’s reliance on research in the absence of any awareness strategies, would be like researching the genetics of breast cancer without providing any warning signs or treatment!

• Research and awareness can be done at the same time.

What the Hon Nicola Roxon had to say in 2007. Australian Doctor.

Labor’s new spokesperson on health has personal reasons for believing prevention is better than cure. Following a tragic personal experience Ms Roxon went on to say – The experience helped form a commitment to preventing or minimizing catastrophic health events through health promotion, prevention and medical research. .

It also drove home to me how much an event like that affects all other aspects of the persons and their family life. We must ensure our systems works well to assist those who are unlucky enough to have a major and unexpected health incident that can turn their life on its head.

Ms Roxon further goes on to say – The passion for health prevention has also been driven by the arrival of her daughter. Contact with mothers has made her aware of how hard it can be for parents to access medical advice unless there is a specific problem, given the shortage of GPs.

What a difference four years makes as Minister for Health and Ageing.