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  Multiple Sclerosis Network of Care Australia

A Voice for People Affected by MS

 

Enhancing Australian Parliamentary Awareness

  Translating Medical advances into MS Patient Benefits
 
A B C D E F G H I J K L M N O P Q R S T U V W X-Y Z
 
What is Multiple Sclerosis? Parliamentary Open Letter News Headlines Quick Reference Guide
       
Ticking Many Boxes  

In March 2016 two of Australia's nationally focused MS consumer organisations (Multiple Sclerosis Network of Care Australia and CCSVI Australia) jointly commenced an ongoing National awareness Program aimed at creating greater political awareness of warnings by medical researchers who caution that cardiovascular dysfunction in MS is incompletely understood and likely under recognized.

 

Supported by feedback from more than 3,000 Australian families living with an MS diagnosis the program centres around an Open Letter to the Australian Health Minister and all Representatives and Senators. Click here for details of earlier (2011 to 2015) parliamentary dialogue on this topic.
 Keeping it Simple
At its most basic level the awareness campaign is underpinned by one question:  
  'Given that no new medical procedures or new medications are involved will you undertake to use your best endeavours to advocate for the Australian Parliament to assist in accelerating what is being learnt regarding cardiovascular disorders and multiple sclerosis into benefits for patients and reduced government outlays?''
 The Two Key Issues
There are two separate but related key issues. First is the need for ready access to cardiovascular (including CCSVI) screening across the MS population. Second is the need for ready access to appropriate guidance about options for best managing the screening outcomes. Neither of these key issues are yet routinely available across Australia nor is there a good understanding of their importance across the MS population or by GP's More about cardiovascular issues and Multiple Sclerosis.
Acknowledgement by Australian Government
In June 2016 the Liberal/National Coalition acknowledged the importance of cardiovascular risk factors (including CCSVI conditions) to multiple sclerosis and said that Australian patients should have timely access to innovative new treatments that have been independently assessed as safe, effective and cost-effective and that Medicare benefits are available to clinically relevant services (including Angioplasty) that are generally accepted by the relevant profession as necessary for the appropriate treatment of the patient.
It went on to identify the Australian Medical Research Advisory Board as having a strategic role in informing the Government regarding the burden of disease on the Australian community and how to maximise the practical benefits from medical research to as many Australians as possible.
Text Books are being re-written
Shortly thereafter the Oxford Textbook of Vascular Surgery a new chapter on Chronic Cerebrospinal Venous Insufficiency (CCSVI). The Oxford Textbook series is the foremost international textbook of medicine. Unrivalled in its coverage of the scientific aspects and clinical practice of medicine and its subspecialties, it is a diagnostic fixture in the offices and wards of physicians around the world. 
Treatment Delayed is Treatment Lost
On 6 June 2017 the Network advised the Australian Health Minister that while some progress is being made it falls short of the need for those diagnosed with MS, in consultation with their GP, to have "here and now" access to screening to determine if they actually have underlying CCSVI conditions. A national transition process is long overdue. Without this many thousands of Australians run the serious (and escalating) risk of not receiving treatment for the progressive condition they do have and, in the worst cases, receiving treatments for conditions they may not have
 Tracking Parties and Party Leaders
Polytrak is a handy resource to help keep track of the many associated conversations
To activate this resource simply search for Polytrak. To review the involvement of a specific representative search by their surname example and another and another. A background note provided to Senator Bushby on 12 June 2016 is well worth a read as is a similar briefing note to Senator Debra O’Neill on 25 April 2016. 

 For Further Details :

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