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POLITICAL RELIEF FOR PEOPLE WITH MULTIPLE SCLEROSIS
In 2011 many families living with MS across Australia approached their parliamentary representatives, both State and Federal, about a range issues associated with CCSVI. In consequence, the following Briefing Note was provided to all 225 Australian Parliamentary representatives comprising the 75 Senators of the Upper House and the 150 members of the Australian House of Representatives.

To: The Parliamentary Representatives of People Living with Multiple Sclerosis
Parliament House
Canberra, Australia

22 September 2011
Reference MSCCSVI - Related Correspondence

Subject : New Knowledge about Multiple Sclerosis

You will recollect that in May 2011, in conjunction with World Multiple Sclerosis Day, Janelle Saffin MP, the Federal Member for Page in the Northern Rivers region of NSW, addressed the Australian House of Representatives regarding new knowledge about improving the well being of many people living with MS.  Since Janelle's address, many families living with MS across Australia have approached their parliamentary representatives, both State and Federal, about a range issues associated with the matters raised.  A Briefing Note is now available that provides a political perspective to subsequent developments along with recommendations about ways that the Australian Government needs to become further involved.

Shortly stated, the Briefing Note calls on the Australian Government to:

"Put 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”.

 In doing this it also asks two questions

1. When will the Australian Government and/or individual parliamentary parties confirm a policy of following the lead of the United Kingdom and Canadian Parliaments by asking Australia's National Health Advisory Body to guide the introduction of CCSVI clinical trials in Australia? - the longer that this is delayed the more that people will continue to suffer”, and

2. Is the Australian Government remiss in not already following this course?


Browse the Briefing Note - below

Peter Sullivan On behalf of the Australian CCSVI Reference Group

    

CCSVI PARLIAMENTARY BRIEFING NOTE (PBN)

New Knowledge about Multiple Sclerosis

You will recollect that in May 2011, in conjunction with World Multiple Sclerosis Day, Janelle Saffin MP, the Federal Member for Page in the Northern Rivers region of NSW addressed the Australian House of Representatives regarding new knowledge about improving the well being of many people living with MS.

Previously it was believed that MS was a chronic neurological illness with immune system associations - the new knowledge relates to the involvement of vascular issues in the process. The hypothesis that a significant number of pwMS may have this problem, now thought to contribute to excessive pressure in the vicinity of the brain, began to gain momentum across the globe during 2009.

Subsequent studies are that up to 90% of the MS population may have this disorder. This irregularity is referred to as Chronic Cerebral Spinal Vascular Insufficiency (CCSVI) and is now internationally recognised as a disorder in its own right. Its precise clinical relationship to the neurological and immune system aspects of MS is not yet entirely clear. However it is being regularly demonstrated that by correcting vein irregularities associated with retrograde blood flows, and for an estimated 60% of those treated, many of the most common symptoms experienced by people living with MS either disappear or are substantially improved.

Significantly, no new medical procedures or medications are involved - rather a long established and safe day surgery procedure is used to correct vein irregularities. While other benefits are being reported they may need to be evaluated over time. Many people being treated for CCSVI describe the outcome as 'life changing'.

At the time of Janelle's advocacy, the Northern Rivers region of NSW was the only rural/regional electorate in Australia (outside of major capital cities) where access to CCSVI screening (Ballina) and subsequent nearby treatment (Gold Coast) was readily available, enabling Janelle to draw upon first hand experiences. The Northern Rivers is one of the fastest growing regions in Australia with population increases around double the national average. Anecdotal evidence is that a significant population movement from cooler climates is contributing to an increasing prevalence of MS in the region.

Unfortunately, and for reasons that follow, CCSVI treatment has since been 'put on' hold in the region (and substantially so in many other localities across Australia). It is likely to be resumed if the recommendations included in this Briefing Note are adopted.  Aassociated petitions also seeks the involvement of the Australian Prime Minister, the Health Minister and MS Australia in bringing about the outcomes described later in this Briefing Note. The petition currently carries approximately 1,500 signatures from all Australian States and Territories, encompassing nearly all 150 Federal electorates. Considering that the Australian MS population is around 21,000 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.

Desired Outcome

The desired outcome is for action by the Australian Parliament to ''put in place policies and programs that support the advancement of CCSVI medical knowledge while, at the same time, addressing the ongoing CCSVI needs of Australians living with MS".

A flow on outcome is "to provide Australia's Parliamentary Representatives with useful insight about some of the issues that families in their electorates, where multiple sclerosis is a factor, may be facing.

The Problem

Since the beginning of 2010 an estimated 15,000 people worldwide have been tested and treated for CCSVI conditions. Several hundred have been in Australia via both the public and/or private hospital systems in most capital cities (except perhaps Hobart and Canberra).  Unfortunately, and during 2011 access to this procedure in Australia has become extremely limited.  It is no longer available through the public hospital system and, at best can only be accessed by those with private insurance or who are in a position to pay ‘up front’.

While growing numbers of Australians are being diagnosed with significantly debilitating CCSVI conditions the majority are now unable to access appropriate treatment in Australia. It is not a good situation - not only are their conditions deteriorating, some rapidly and some significantly, but the knowledge that they are not now permitted to access treatment in Australia can be devastating. Situations exist where essential 'follow up' treatments are also being deferred and/or denied.

Amongst many, there is a growing belief that, at this stage of the CCSVI learning process, it is desirable that the procedure be carried out in environments whereby the outcomes, both short and long term, can best be evaluated to facilitate ongoing patient care in parallel with the development of the rapidly emerging CCSVI knowledge base. Clinical trials, broadly conceived, are seen as one vehicle capable of achieving these aims. While this issue is being debated the growing number of Australians being diagnosed with significantly debilitating CCSVI conditions are unable to access the recognised treatment procedure. Such a trial, but on a small scale, has been proposed by Professor Thomson from the Alfred Hospital in Melbourne - it has been awaiting Ethics Committee approval for some considerable time. Families living with MS have raised in excess of $80,000 to support this (or a comparable trial).

However access to this trial will be limited - being governed by issues such as funding, geographic accessibility, numbers and the eligibility criteria itself. Much more is needed. Feedback from Vascular specialists across Australia is that they would be interested in participating in broader based clinical trials.

Conversely, MS Australia recently advised “We have actively encouraged Australian researchers who wished to pursue research into this condition; this has resulted in only two small scale projects". In responding to a host of developments internationally the comment is made "We eagerly await results from the larger research efforts to help shape our policies and in particular, our advocacy, on this important issue".

The reality is that the outcomes of some of these efforts will extend over several years whereas it has already been established that CCSVI conditions affect a significant percentage of the MS population.

Role of Australian MS Societies.

In Australia there are five independent State and Territory based MS ‘societies’. In some situations, the five independent bodies provide a common voice under the banner of "MS Australia". The primary mission of MS Australia is to "Enhance the quality of life of people with MS and reduce the impact of MS on the families and carers of those with Multiple Sclerosis". In doing this it also seeks to "Maintain and increase its role as a leading not-for-profit organisation and a preferred charity in Australia for community and corporate support".

For some time it was thought that MS Australia might play a leadership role in developing a national framework for CCSVI management but this never eventuated. There is a sixth independent but related entity, known as MS Research Australia whose mission is "to accelerate Australian MS research toward the prevention, better treatments and a cure for MS. It achieves this by working in partnership with relevant medical research institutes and scientists around Australia, encouraging collaborations and focus on its strengths in this research".

In relation to CCSVI developments the focus of all of these bodies has almost exclusively been on clinical (health status) aspects of CCSVI especially its possible associations with MS progression. Little weight appears to have been placed on the impact of CCSVI developments on Quality of Life issues - the primary mission of MS Australia. 

Quality of Life when Living with MS.

A health-related approach to QoL underestimates the challenges faced by pwMS with activities of daily living and basic social routines. By contrast, and given that CCSVI is a recognised medical condition in its own right, many in the MS community are seeking 'here and now' screening for CCSVI conditions and the symptom relief and enhanced Quality of Life perceptions associated with its treatment. It is well demonstrated that quality of life and health status are quite distinct concepts.

In fact Australian studies in relation to QoL perceptions by people with multiple sclerosis confirm that psychosocial aspects are represented much more frequently than physical aspects.

Striking a Balance

An inability to access a straight forward long established medical procedure, a lack of effective involvement, and a concern that MS organisations in Australia are not widely acknowledged as being at the forefront of vascular research, negatively impacts on QoL perceptions of many people living with MS. This is in conflict with the mission of MS Australia.

In a number of respects the environment is similar to experiences elsewhere across the globe that led the a representative of the Canadian MS Society to say "We are sorry, I think we came down too heavily on the side of research and not enough empathy for patients and what they're going through. As subsequently transpired (see later) in Canada and the United Kingdom, leadership in the resolution of these issues is becoming a responsibility of National Governments.

The Solution
.

Since Janelle’s advocacy to the Australian Parliament there have been two political developments that address this issue.  Both the United Kingdom and Canadian Governments, acting on the recommendations of their respective Peak National Health Advisory bodies, have committed to national CCSVI clinical trials.

In both instances their respective national MS organisations had strenuously avoided being placed in a lead position in relation to CCSVI (as also appears to be the case in Australia). Now that the lead decision has been taken much of the ambiguity, conflict and confusion sometimes associated with the CCSVI debate is beginning to decrease in these countries.

By comparison things have deteriorated in Australia. We have moved from being at the leading edge of enabling vascular specialists to literally 'change the lives' of many people living with MS to one where the Board of many hospitals no longer sanctions the straightforward CCSVI day surgery procedure. Were national clinical trials and appropriate follow up procedures instigated in Australia this problem would be significantly addressed.

A National Program is Needed.

Compared with other countries Australia has a high incidence rate of MS - especially in the cooler climates of South Eastern Australia. The incidence of MS in Tasmania is extremely high. As with Canada, the Health Ministers of individual Australian States and Territories may wish to provide programs to support the needs of their constituencies. However, for a variety of reasons, a national program is considered to be essential.

The Two Political Questions

The MS Community, through the Network of Care, is seeking a response to this Briefing Note, by elected representatives, by way of answers to the following two questions:

1. When will the Australian Government and/or individual parliamentary parties confirm a policy of following the lead of the United Kingdom and Canadian Parliaments by asking Australia's National Health Advisory Body to guide the introduction of CCSVI clinical trials in Australia? - the longer that this is delayed the more that people will continue to suffer”, and

2. Is the Australian Government remiss in not already following this course?

A Suggested Action Strategy

The Australian CCSVI Reference Group, comprising people with MS across Australia, with first hand experience in CCSVI screening and treatment, and in consultation with a range of stakeholders, including experts in vascular disorders, have developed a draft Action Strategy designed to progress the achievement of the proposed solution. It has been developed on the premise that the Australian Parliament will positively respond to the lead being shown by the United Kingdom and Canadian governments by developing policies and programs complementary to those being introduced in those countries.

To the extent that the administration of this group is based in Melbourne, and as a first step, the opportunity would be appreciated for representatives of this Reference Group to meet the CCSVI Parliamentary Committee envisaged in draft Action Strategy - browse the suggested Action Strategy.


More Information

At the time of her address to Parliament in May 2011 Janelle observed "this is certainly an emerging issue that we will have to turn our minds to". To this end she commended a discussion paper '
CCSVI in Australia - A Strategic Overview from the Perspective of those with MS' . This paper provides a perspective on multiple sclerosis and CCSVI developments through the eyes of people living with MS - browse this paper.

Further Afield

This Briefing Note would fall short if it did not also highlight that, unlike many other countries, especially the United Kingdom, it is understood that Australia has never formally adopted comprehensive national guidelines for managing the primary and secondary care of people with multiple sclerosis. Without benchmarks that establish a right to specific aspects of care, enormous pressure is placed on people with MS, their families and all of those entrusted with their care - more about this issue.

In Summary.

Whatever your role in Australia's political environment it is hoped that this Briefing Note provides useful insight about some of the issues that families in your electorate, where multiple sclerosis is a factor, may be facing. Many will be unaware of many of the points that have been highlighted. The missing link is leadership.

This Briefing Note was developed by Peter Sullivan in collaboration with the CCSVI Australia Reference Group .


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