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A Voice for People Affected by MS
Providing Participation Opportunities - Petitions

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YOUR SUPPORT WILL HELP AUSTRALIAN FAMILIES LIVING WITH MULTIPLE SCLEROSIS

Your Investment  - 5 minutes of your valuable time

Since May 2011 the Australian MS community has actively sought the support of Multiple Sclerosis Australia (MSA), Multiple Sclerosis Research Australia (MSRA), Medical Professionals, Australian parliamentary representatives and the broader MS community in obtaining medical recognition and treatment for a vascular condition shown to contribute to many of the most common symptoms frequently associated with Multiple Sclerosis. The condition is known as chronic cerebrospinal venous insufficiency (CCSVI). In conjunction with World MS Day 2011, Janelle Saffin, the Federal Member for Page in the Northern Rivers region of NSW, launched this campaign in an address to the Australian Parliament - read about Janelle's address
Roadblocks and Opportunities - Background History

The campaign has experienced a wide range off road blocks and opportunities. For those who may appreciate a refresher on some of this background and history, including Kerri Cassidy's landmark achievement in winning the 2016 Australian Government National Award for "Excellence in Justice and Rights Protection"  see the document "United Nations Convention on the Rights of those with Disabilities''. This is an important document for policy makers and government agencies to understand the obstacles faced by people with Multiple Sclerosis in Australia and the strategic direction to remedy this..

The Problem
Access to CCSVI procedures in Australia is currently very limited. Where it is available it is largely restricted to those with private insurance. Leadership by the Australian Government is needed to support a range of initiatives that, collectively, will enable all Australians with MS to find out how they may be affected by CCSVI and what treatment options may be available. Experience across the globe is that this condition may affect up to 80% of pwMS
How can Your Voice be Better Heard?

Several hundred Australians have already undergone CCSVI screening and treatment - many of these have also completed national petitions on this topic aimed at helping Australians with MS to access such procedures.  These petitions are very important because they enable the voices of people affected by MS to be better heard and their frustrations understood. The petitions collectively carry approaching 3,000 signatures from all Australian States and Territories, encompassing nearly all 150 Federal electorates. The non Australian content is around 15%. Considering that the Australian MS population is around 24,000 this is a significant indicator of the wishes of the electorate on this matter. These numbers increase as awareness of CCSVI issues becomes more generally known.

Add Your Voice and also be kept in Touch
If you have not yet completed a petition and are in any way involved with living with MS, or caring for, or supporting those who are, or would just like to support families living with MS, your signature and possible short comment, is a small but important way of helping the voice of people affected by MS to be better heard. You will also receive periodic email updates about ongoing developments - example. Another very effective way of contributing is via the CCSVI Australia Face Book site
Tell Others
You can also help enormously by telling your sister networks about this issue and asking for their support. For the more proactive ask your Member of Parliament how they are progressing this issue.
A Patients Perspective
It may also help with your understanding to hear from a member of the MS Community with first hand experience with CCSVI - A Patients Perspective
Find Out More

An Overview from the perspective of those with MS' - read this Discussion Paper

'A Briefing for Australia's Political Representatives

In September 2011 a Parliamentary Briefing Note (PBN) dealing with ongoing CCSVI developments, was provided to all of Australia's 225 Australia's Parliamentary representatives about ways for the Australian Government to become involved in "putting in place policies, programs and practices that support the advancement of CCSVI medical knowledge in Australia while, at the same time, addressing the ongoing CCSVI needs of Australians living with MS. .

Subsequent Developments
A briefing was conducted at Parliament House, Canberra on Monday 25 June 2012 with the aim of building common ground.  Laura Smyth MP committed to meet with Janelle Saffin MP on what to present to the Parliament's Health Committee with the aim of obtaining agreement from the Health Minister and NHRMC to fast track appropriate action. MSA and CCSVI Australia agreed to produce a 'united statement' for them to use in their work. MS Australia was represented by their President, Rob Hubbard and Robert Pask. CCSVI Australia was represented by Kerri Cassidy and Helena Webb. An excellent clinical overview of CCSVI and MS was provided by Doctor Paul Thibault.   All in all an important step forward To find out more refer to the CCSVI Executive Overview
 

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