Federal Government Initiatives
SMA Parliamentary Representations
It has been nearly 2 years since Julie Cini CEO and Donna Liver, Member, of SMA Australia, first met with The Hon Rob Oakeshott MP (Federal Member for LYNE) to discuss Spinal Muscular Atrophy, it’s effect on Donna’s son Finn Munro, and the opportunities to unify key stakeholders in promoting SMA awareness, prevention, therapy & research.
The following representations to Federal Ministers have been made since, as follows:
- 2 November 2009 Letter from The Hon Rob Oakeshott MP on behalf of Julie Cini to The Prime Minister, The Hon Kevin Rudd MP. This was answered by The Minister for Health and Ageing, The Hon Nicola Roxon MP.
- 14 December 2009 Letter of response to The Hon Rob Oakeshott MP from the Minister for Health and Ageing, The Hon Nicola Roxon MP
- 15 December 2009 Letter from The Anthony Byrne MP, to the Minister for Health and Ageing, The Hon Nicola Roxon MP regarding SMA Australia’s petition for a national screening program. Response dated 12 Feb 2010 referred to the government’s promise of health reform.
- 23 February 2010 Andrew Kornberg presented the SMA Health initiatives report identifying the needs for the SMA community.
- 19 May 2010 Letter on behalf of Professor Kornberg to The Minister for Health and Ageing, The Hon Nicola Roxon MP.
- 13 December 2010 Letter on behalf of Professor Kornberg and receipt of a copy of a response letter from The Minister for Health and Ageing, The Hon Nicola Roxon MP.
- 23 August 2011 Chris Hayes MP spoke about Spinal Muscular Atrophy and moved a motion that
(1) notes that the month of August is Spinal Muscular Atrophy (SMA) Awareness Month;
(2) further notes that: 174 HOUSE OF REPRESENTATIVES Monday, 12 September 2011 MAIN COMMITTEE (a) 52 Australians die each month from this rare genetic motor neuron disease;
(b) SMA is the leading genetic killer of infants under the age of two; and
(c) this debilitating disease can occur in both adults and children;
(3) expresses support for:
(a) the Spinal Muscular Atrophy Association Inc.; and
(b) all Australian families affected by this incurable disease; and
(4) calls for the Government to:
(a) lodge SMA as a keyword with the National Health and Medical Research Council;
(b) provide support for practical initiatives for those affected by SMA; and
(c) promote awareness of SMA.
- From 01 – 12 September 2011 letters were personally addressed to the following 52 MPs, plus Senator Gavin Marshall, and the members of the Standing Committee on Health and Aging :
- Mr Alan Tudge Aston, Vic
- Mr Patrick Secker Barker, SA
- Mr Geoff Lyons Bass, Tas
- The Hon Martin Ferguson Batman, Vic
- Mr Steve Gibbons Bendigo, Vic
- The Hon Jason Clare Blaxland, NSW
- Dr Andrew Southcott Boothby, SA
- The Hon Alan Griffin Bruce, Vic
- Ms Maria Vamvakinou Calwell, Vic
- Ms Gai Brodtmann Canberra, ACT
- Mr Scott Morrison Cook, NSW
- Mr Darren Cheeseman Corangamite, Vic
- The Hon Richard Marles Corio, Vic
- Ms Sharon Bird Cunningham, NSW
- The Hon Peter Dutton Dickson, QLD
- Mr Craig Thomson Dobell, NSW
- The Hon Bruce Billson Dunkley, Vic
- The Hon Dr Mike Kelly Eden-Monaro, NSW
- The Hon Greg Hunt Flinders, Vic
- Mr Chris Hayes Fowler, NSW
- Dr Andre Leigh Fraser, ACT
- Ms Melissa Parke Fremantle, WA
- The Hon Nicola Roxon Gellibrand, Vic
- Mr Darren Chester Gippsland, Vic
- The Hon Kevin Rudd Griffin, Qld
- Mr Ewen Jones Herbert, Qld
- Mr Paul Neville Hinkler, QLD
- The Hon Anthony Byrne Holt, Vic
- Mr Craig Kelly Hughes, NSW
- The Hon Joel Fitzgibbon Hunter, NSW
- Ms Laura Smyth La Trobe, Vic
- The Hon Julia Gillard Lalor, Vic
- The Hon Rob Oakeshott Lyne, NSW
- The Hon Dick Adams Lyons, Tas
- Mr Russell Matheson Macarthur, NSW
- Mrs Louise Markus Macquarie, NSW
- Mr Rob Mitchell McEwen, Vic
- The Hon Chris Bowen McMahon, NSW
- Mr Michael Danby Melbourne Ports, Vic
- Mr Steven Ciobo Moncrieff, Qld
- Mr Tony Windsor New England, NSW
- Ms Sharon Grieson Newcastle, NSW
- The Hon Bob Baldwin Paterson, NSW
- The Hon Justine Elliot Richmond, NSW
- Mr Harry Jenkins Scullin, Vic
- Ms Jill Hall Shortland, NSW
- Mr Steve Irons Swan, WA
- The Hon Tanya Plibersek Sydney, NSW
- Mr Stephen Jones Throsby, NSW
- Mr Nick Champion Wakefield, SA
- Mr Laurie Ferguson Werriwa, NSW
- Mr Kelvin Thomson Wills, Vic
Speakers for Monday 12 September 2011
1. Mr SECKER (Barker-Opposition Whip)
2. Mr HAYES (Fowler)
3. Mr GRIFFIN (Bruce)
4. Mr McCORMACK (Riverina)
5. Ms HALL (Shortland-Government Whip)
6. Mr CRAIG KELLY (Hughes)
7. Mr OAKESHOTT (Lyne)
8. Mr MATHESON (Macarthur)
Through these discussions we have now seen the formation of the Australian Neuromuscular Network and congratulate Professor Kornberg & Associates on the launch of the ANN on the 20th April 2011. www.ann.org.au and now take comfort in the knowledge that clinicians, pathologists, geneticists, researchers and patient advocates are networking, ensuring excellence in diagnostic methods and clinical management, offering equal access to clinical trials and new therapies for all individuals in Australia and New Zealand affected by neuromuscular disorders.
The SMA Health Initiatives report from Professor Kornberg, has recommended four important initiatives to enable SMA to be better treated here in Australia these include:
- 1. Carrier and Pre-Natal testing
Currently individuals are not routinely tested for this disease. If individuals are aware of the existence of this disease, and wish to exclude it, they must pay c. $380* (*not Medicare rebated) to be screened. Carrier testing for the SMA gene, could prevent the continuance of the disease. In fact, screening for a multitude of rare diseases, will ultimately put less strain on the health system’s budget, as, for instance, every sufferer of SMA will require 24 hour care during their lifetime. We currently have a petition circulating to present to Parliament about this screening program.
- 2. Gold-standard care in multidisciplinary clinics.
Sufferers of chronic neuromuscular diseases need appropriate pro-active care. Multidisciplinary clinics, offering standardized treatments should be available to all families, in every state and territory. Such would ease the burden on families who far too often must visit a myriad of healthcare providers in order to access all-round care.
- 3. Cough Assist Machines
Government rebates or subsidies on the purchase of these life-saving devices would enable carer families, who are commonly recipients of carers’ pensions, to manage the SMA sufferer at home, and therefore reduce the time spent in hospital. Currently the only way for an SMA sufferer to obtain a machine is purchase one at their own expense c. $12,000; or apply, as a member, to SMA Australia. This charity has a finite number of cough assist machines in its Equipment and Resources Library – which has been supported purely by the efforts of fundraisers and philanthropists.
- 4. Research
Spinal Muscular Atrophy MUST be listed IMMEDIATELY as a KEYWORD with the National Health and Medical Research Council. SMA Australia has directed specific funds to researchers at the Australian Neuromuscular Research Institute in order to identify alternative gene therapies. The ongoing cost of this research is inhibitory for a small organisation. The benefit to the public purse would be immense should research funded via the NHMRC lead to a cure.
When campaigning for change at a government level, you have to be prepared for two things. One is to have a continued approach and two be prepared to wait. Change doesn’t happen overnight!
A second opportunity to re-enter the Political arena came in August 2011, when the Hayes family in Canberra contacted a family member Mr Chris Hayes (MP FOWLER) in regards to the possibility of raising this issue in Parliament.
The Hon Chris Hayes MP made a heartfelt speech on 23 August 2011 to draw the attention of the house to Spinal Muscular Atrophy. Here, a motion was put forward to the house that SMA be debated so the SMA and the work of the association be acknowledged, and support from the government is needed. Julie Cini was invited to Canberra by Chris Hayes, to raise awareness amongst other members of Parliament.
On Thursday 26 August, Julie Cini along with Tamara Hayes and Carol Hayes attended a meeting with invited politicians to brief members about the condition and the challenging problems that many families face on a daily basis. The members that attended were moved and wanted to show their support by speaking in support of the Association at the debate which was scheduled for Monday 12 September 2011.
This scheduled bi-partisan debate not only highlighted to the house about Spinal Muscular Atrophy, but the challenges the charity confronted, but the challenges families faced every day. Each of the eight MP’s spoke about and acknowledged the hard work and determination of Julie Cini and her ability to start a charity to raise awareness, educate about the disease and support families was outstanding due to her own personal circumstances. They also highlighted to the speaker of a local family in their electorate that had been affected by the disease and the struggle each family faced. Again each member who spoke, supported the need for the implementation of the suggested health initiatives.
The time restraints meant that the debate was adjourned, but after talking with SMA’s local representative Alan Griffin (MP for Bruce) and Julie Cini’s local member Laura Smyth (MP for La Trobe) before the debate, we were given some informative information about how to continue to push our key demands. Our next step involves costing these health initiatives, and presenting them to the Health Minister. In doing this we must make sure that the programs are cost effective and practicable for the government to implement.
We are as far now than we have ever been in this arena, and we thank each and every one of our members and families that assisted us in early September, in approaching their local member to highlight their own story. We are unable to create change if the people who run our country aren’t even aware of what Spinal Muscular Atrophy is. There is still a long way to go, but with repeat efforts we can make a difference for all those who are on the journey, and also help those who have no idea that one day they could be effected by SMA too.
There are a few areas of difficulties I see that SMA as a neuromuscular disorder has to face is:
- that it continues to be nested under the MD (Muscular Dystrophy) banner and not recognised as a disorder in its own right, with its own issues that sufferer and families have to face. (The Minister For Health and Ageing the Hon Nicola Roxon MP letter dated 16th July 2010)
- SMA is continued to be labelled a chronic disease when in fact the majority of SMA deaths occur before the age of 2. (The Minister For Health and Ageing the Hon Nicola Roxon MP letter dated 16th July 2010 and 25 Jan 2011)
- that there are many families (approx. 630 SMA deaths ABS 2008) who are affected by their loss, I am sure would rather move on in their lives than chose to be pro-active for the SMA cause. So in effect, the numbers are fewer of parents like ourselves fighting for the survival of their child.
- SMA being listed as a NHMRC keyword (The Minister For Health and Ageing the Hon Nicola Roxon MP letter dated 25 Jan 2011) even though the government is assured that “this is not the case”, what is stopping it being recognised and listed anyway??