CCSVI Australia Update July 4th 2013
Over the last few years a great deal of effort has gone into raising awareness of CCSVI amongst people with MS, the wider community, Parliament representatives, the Health Minister and her department, the medical community and the institutional bodies who represent people with MS. We have achieved this through social media, informational forums, participating in vascular conferences, three stories on television, a national radio story, an article in Australian Doctor, a Parliamentary briefing, numerous letters and meetings with Members of Parliament both in government and opposition. CCSVI has also been mentioned twice in Parliament question time. You can view much of this on our website. We have also engaged regularly with MS Australia in hope of finding common ground and that they would represent people with MS on the issue of unfairness and discrimination with respect to access to Vascular care.
All of this work has been done by volunteers, many who live with Multiple Sclerosis and their families and friends.
It is estimated that over $1.4 million has been paid by those who have been treated for CCSVI privately with over 700 procedures being performed in Australia. A proportion of these procedures were billed to Medicare prior to January 2011. Since then, mostly due to the policy of individual hospitals, access to angioplasty treatment for venous abnormalities is difficult to obtain if you have Multiple Sclerosis or a Neurodegenerative disease.
The current Government position, as per numerous letters sent from the Minister for Health, Tanya Plibersek, is this is considered a new treatment. “When a medical service is not covered by Medicare, applications can be made to the Medical Services Advisory Committee (MSAC). The MSAC is an independent expert committee which provides advice to the Minister for Health, on whether a medical service should be publicly funded based on an assessment of its safety, effectiveness and cost-effectiveness, using the best available evidence.”
Regarding government funding for research; “Applications for Australian Government research funding for human health and medicine are administered by the National Health and Medical Research Council (NHMRC). Since 2000, the Australian Government has provided over $54 million in grants for research into MS.”
After three and a half years of collaboration with MS Australia we have only recently been informed by the newly appointed CEO, Debra Cerasa, that they will not represent people with MS on the issue of discrimination with respect to access for vascular care unless they are provided with a quantum and with evidence based research. This means that 10% of people with MS (or 2400 people) have to show interest in MS Australia taking up the issue on our behalf. To quote Ms Ceresa: “MS Australia would make applications/submissions based on evidence based research, based on facts of what is and is not available and clarity of evidence of the efficacy of a procedure. There would need to be considerable “lobby for action” from PwMS and a substantial quantum for change/submission, that was endorsed by MS Australia’s Board and organisation members.”
After going through all reasonable channels with MS Australia a new roadblock has been laid effectively shutting down future communication unless we can meet the above expectation. We are not interested in jumping through hoops nor do we need to. MS Australia exists for one purpose and that is the represent people living with MS to ensure that the impact of MS is minimized for the individual, their family and/or their carer. If they truly exist to advocate for the issues confronting people with MS they will take the concerns of each individual seriously. Not only that, if they cannot see the “considerable lobby for action” of people with MS in recent years then what more can we do?
There is one fact that should be at front of our minds. We have been told by the President Rob Hubbard not to expect future investment from MS Australia for research into angioplasty for CCSVI because MS Societies in Canada and Italy are already doing it. When I asked what the status was in either of these countries there was no reasonable response given. This is because there is no such research underway. The most recent update I was provided was dated 28th September 2012. This position is both disingenuous and misleading.
It appears the onus is very much on people with MS, family and friends to work towards supporting evidence based research, such as that underway at the Alfred Hospital (which has been ratified by MS Research Australia), in order to show the efficacy of this treatment. It certainly feels that another layer of discrimination and unfairness has been placed on our shoulders. The experience and testimony of people with MS and the observations of their treating doctors continues to be summarily dismissed.
Whilst it would be easy to be overwhelmed and feel overpowered we still have avenues to work through and CCSVI Australia would invite you to participate in these areas:
Help us continue to lobby our Members of Parliament and to those who are standing for election. When you receive paraphernalia from the parties in your electorate, take the time to write a letter to each of them explaining what CCSVI is, what the issues are and your own personal story. You can request a face-to-face meeting to discuss the issues further. You can inform them of the Alfred trial and that we, as people with MS, are left to raise $350,000 to provide the scientific evidence ourselves. We cannot underestimate the value of increasing the groundswell of support on a political level especially now as there is a scramble for your vote! (Check out the ‘Take Action’ tab on our website for ideas on how to do this).
Secondly support the trial at The Alfred. You can do this by donating directing through our website, fund raise in your area and participate in future events that are currently being planned by our volunteers. CCSVI Australia is now a registered charity and we can provide tax deductible receipts. We are also developing a sponsor’s page on our website so if you are a business owner we would be happy to list you as a supporter of CCSVI research (more to come on that). It is pleasing to know that in the next couple of months The Alfred will be making application to the NHMRC for government funding and we hope that this will be honoured.
To our friends overseas, if there is no research underway in your own country perhaps you could consider adopting us and help raise these necessary funds?
Finally, you can inform MS Australia of your wish to be counted by writing to the CEO, Debra Cerasa at firstname.lastname@example.org and communicating your personal story. Please copy your email to your respective state CEO (addresses below) and also to us at email@example.com :
ACT/NSW/VIC), Robyn Hunter: firstname.lastname@example.org
WA Marcus Stafford: email@example.com
SA & NT: Graeme Warnock: firstname.lastname@example.org
Tasmania: Dale Eastley: email@example.com
Queensland: Lincoln Hopper: firstname.lastname@example.org
It is not the time to throw up our hands and declare that this is all too hard. There are things that every person who follows this page can do to assist the process to obtain fair access to vascular care for people with MS and other neurodegenerative diseases. To recap:
- Write to your local member and those contesting at the next election
- Support The Alfred trial
- Write to MS Australia
There is a difference between we who are advocating for access to treatment to unblock veins and those who would put obstacles in our way and that is that many of us have Multiple Sclerosis and have experienced first hand the relief it can bring. Why wouldn’t we work to see that available to all?
Keep in mind what the Minster for Health, the Hon Tanya Plibersek said on Monday: “If you don’t fight, the bad people win.”