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HoriZonsSCAN "E x p a n d i n g  the  A to Z  of  MS  Awareness  Horizons"
   
Protecting the Vulnerable Must Always be our First Priority

Consensus Based Common Ground 
 
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
Critical Role of Venoplasty in MS Symptom Relief - A Quality Assessment
Ongoing research identifies more than 80% of those with MS tested for CCVI conditions to have largely undiagnosed but potentially treatable vascular irregularities that can significantly impact on the severity of many of the most common symptoms of MS. In Australia there is no routine screening for this condition - with the result that few are aware of this or their treatment options. In 2011 this issue was taken up by HealthPACT - an organisation comprising representatives from health departments in all States and Territories and the Australian and New Zealand governments.
Credibility HealthPACT is Australia’s peak Health Policy Advisory Committee on Technology to the Australian Health Ministers’ Advisory Council (AHMAC). In November 2011 it provided a quality assessment on the use of Percutaneous Venoplasty to relieve the symptoms of Multiple Sclerosis by improving Cerebrospinal Venous Drainage.
Shortly stated, the assessment identified Percutaneous Venoplasty as an established, routine procedure, with a proven safety and efficacy. It went on to say that the outcomes of from randomised, controlled, clinical trials with long term follow up of patients will need to be evaluated before the procedure can be widely adopted in the treatment of CCSVI in patients with MS - see http://www.msnetwork.org/innovation.htm#Figure%203
The Question to be Answered
It identified the question to be answered as "Does Percutaneous Venoplasty (PTA) make a difference in relieving the symptoms of multiple sclerosis by improving cerebrospinal venous drainage?'' This assessment also:

* provided important guidance for all involved in the processes of translating what is being learnt into benefits for Australians diagnosed with MS. 
* was catalytic in bringing together the Australian patient-centred Leadership Team who put in place the internationally acclaimed  clinical trial at the Alfred Hospital in Melbourne, established CCSVI Australia to advocate in partnership with the Australian MS community and developed the world class HoriZonsSCAN database to enhance decision making. In contrast responses by organisations operating under MS Australia banners (MSA and MSRA) have been disturbingly inconsistent..
* paved the way for the recognition of Kerri Cassidy as the winner of the 2016 Australian Award  for the Excellence in Justice and Rights Protection  - for her long-term commitment to promoting justice and rights protection for people with disability. Judges said "'This is a reflection of her work in raising awareness and calling for equitable access to treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI) for people with Multiple Sclerosis" 
* underpinned a submission to the 2015 Australian Parliamentary Health Care inquiry in parallel with briefings for all Party leaders and many representatives.
Subsequent to HealthPACT's guidance there has been an explosion of knowledge relating to the impact of vascular irregularities on MS progression - and the important role that Venoplasty can play in addressing this impact -

http://www.msnetwork.org/evidence/index.htm#common

 Consistency through Consensus based International Standards
Standards In 2014 more than 60 members of the International Society for Neurovascular Disease (ISNVD) comprising neurology, radiology, vascular surgery, and interventional radiology experts participated in the development of standardized noninvasive and invasive imaging protocols for the detection of extracranial venous abnormalities indicative of CCSVI.
This ISNVD position statement presents the MR imaging and intravascular Ultrasouund protocols for the first time and describes refined color Doppler Ultrasound and Catheter Venography protocols. It also emphasizes the need for the use of for noninvasive and invasive multimodal imaging to diagnose adequately and monitor extracranial venous abnormalities indicative of CCSVI for open-label or double-blinded, randomized, controlled studies.
http://www.msnetwork.org/headlines/ccsvi-protocols-2014.htm

November 2016 saw the publication by way of a Consensus Statement providing recommendations for the definition, standardization and clinical evaluation of the Central Vein Sign (CVS) in the diagnosis of MS. These statements are based on a thorough review of the existing literature on the CVS and the consensus opinion of the members of the North American Imaging in Multiple Sclerosis (NAIMS) Cooperative. The aim is to better differentiate between MS and its mimics. http://www.msnetwork.org/future/central-vein-sign.htm
Long term significant symptom relief
Outcomes The long term benefits in treating Multiple Sclerosis symptoms via Percutaneous Venoplasty (PTA) are attracting significant attention. One  example is a study that reviewed 2150 such examinations across 366 CCSVI affected patients over a 4 year period - resulting in significant and enduring drug free relief from at least 12 of the most common and significantly disabling symptoms of MS. About related outcomes http://www.msnetwork.org/ccsvihistory.htm#benefits
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. http://www.msnetwork.org/expectations/australian-government.htm
Problems in accessing vascular screening and individual guidance
Issues Treatment of CCSVI conditions (where appropriate) via Venoplasty is a 1 hour day surgery procedure. Disturbingly, and despite being safe, highly cost effective and not involving new medical procedures or new medications, access to screening and possible treatment is reportedly no longer available (to  those with MS) through Australia's public healthcare system - and difficult to access elsewhere.   
Astonishingly an embargo exists on CCSVI Medicare coverage for those diagnosed with MS - but not for those with other chronic conditions requiring vascular interventions. While some initial caution by regulators may have been understandable there is now a wealth of evidence against maintaining this roadblock - treatment delayed is treatment lost. Discrimination of this dimension is likely in breach of Article 25 to the United Nations Convention on the Rights of Persons with Disabilities. http://www.msnetwork.org/basics/UN%20Conventions-abridged.htm#25
 
The medical ethical consideration ''first do no harm" has dropped below the horizon. A nationally agreed strategy is urgently needed to remedy this situation - especially for those most in need. Included are many for whom no other proven and safe treatments are available.
 
As at December 2016 petitions supporting the rights of Australians living with an MS diagnosis to access CCSVI screening, guidance and appropriate treatment have attracted 3,000 signatures - 758 since August 2016. More than 80% of those signing are from Australia. Given an Australian MS population of around 24,000 a response rate of 12% is significant - here is where to add your support http://www.msnetwork.org/electorates/openletter.htm
Quantitative data versus Qualitative Evidence
Peter Sullivan, one of the foundation members of the Multiple Sclerosis Network of Care, Australia. is a person diagnosed with Multiple Sclerosis with a strong professional background in the use of information technology to enhance strategic decision making in both the public and private sectors. In 2009 he volunteered to guide development of Australia's HoriZonsSCAN MS research database - now recognised as one of the worlds leading MS research resources - especially in relation to CCSVI issues.
Protecting the Vulnerable Must Always be our First Priority
When commenting on the wealth of CCSVI quantitative statistical data that it now references he said "when human rights issues are involved it is essential to also pay high regard to real time, real world ''here and now'' qualitative evidence - especially visual evidence.  For it is this evidence that invariably mobilises decision making. Seeing is believing".

"For example, the impact of the media coverage of the Tampa disaster resonated with many. The scenario whereby vulnerable minorities are offered safe passage for financial gain has many parallels". Peter went on to say ''protecting the vulnerable must always be our first priority -  where visual qualitative data is supported by historical quantitative data so much the better" - more about vulnerable minorities in an MS context  http://www.msnetwork.org/caution.htm#protecting
Some good examples
Kerri Cassidy's video library follows Kerri's journey over more than 5 years since her treatment. Topics covered are: In the beginning "I had a doppler scan yesterday, The journey begins (good starting point), Treatment (part1), Treatment (part2),  Treatment outcomes after:- seven days, eight months, one year. three years, five years Other interesting discussions by Kerri relate to the role of Hope and her role as CEO of CCSVI Australia - http://www.msnetwork.org/evidence/video-library.htm
Advocating to redress this unhealthy situation
In November 2016 Kerri was announced as the winner of the 2016 Award  for the Excellence in Justice and Rights Protection Award - for her long-term commitment to promoting justice and rights protection for people with disability. Judges said "'This is a reflection of her work in raising awareness and calling for equitable access to treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI) for people with Multiple Sclerosis. Kerri h. as demonstrated her determination and commitment to raising awareness about the need for justice and rights protection of people with Multiple Sclerosis (MS) through the equitable access to Chronic Cerebro Spinal Venous Insufficiency (CCSVI) treatment". Read Kerri's acceptance speech
 
The December 2016 edition of the Australian Women's Weekly provides good coverage of Kerri's story
 http://www.msnetwork.org/expectations/womens-weekly.htm

This story is complemented by the following historical snapshots that highlight underlying research.

An Australian Perspective Vascular associations with Multiple Sclerosis
Consensus based Common Ground
Latest Research Patient Perspectives Obstacles and Opportunities Human Rights Issues
Quick Reference Guide News Headlines What is Multiple Sclerosis?
2009 to 2011 - In the Beginning RM3300MS

In November 2011 Dr Prema Thavaneswaran from the Australian College of Surgeons authored a comprehensive and entirely impartial HealthPACT review of CCSVI developments across the globe, Australian responses thereto and potential strategies for the broader diffusion (page 4 under the heading Diffusion) of the benefits of what is being learnt across the Australian MS community.

 

Dr Thavaneswaran observed ''A number of vascular outcome measures were assessed, including preoperative and postoperative venous pressure, patency rate  and the postoperative course and rate of complications, including patients’ tolerance of the procedure. Neurologic outcomes were assessed by a nonblinded team of neurologists. Outcomes included disease severity, arm and hand function and cognitive function  Other neurological outcomes assessed were the rate of relapse in RRMS patients, and quality of life.

 

Access this report

http://www.msnetwork.org/facts/HealthPactNov2011.pdf
2011 to early 2014 – Addressing Divergent Outcomes
 During this period divergent study outcomes were reported regarding the use Doppler ultrasound to detect potential CCSVI conditions - despite it being known that this technology is not a reliable ‘’stand-alone’’ CCSVI diagnostic tool. Many of these studies also focused on the identification of ‘’vascular blockages’’ or vein dimensions whereas the correct benchmark relates to the measurement of disturbed blood flow. Compounding all of this was a highly variable range of operator skills and diagnostic capabilities. The outcomes of some were not treated kindly when peer reviewed – some were actually discontinued prior to completion. Much was learnt.
 
 Conversely the outcomes of concurrent examinations using multi-model approaches and skilled technicians confirmed the presence of CCSVI conditions. These showed that both a non-invasive and invasive multimodal imaging diagnostic approach depicted a range of extracranial venous anomalies indicative of CCSVI. Catheter venography studies gave a regular picture, with the majority of patients with multiple sclerosis presenting with demonstrable outflow abnormalities in the veins draining the central nervous system. The prevalence of these lesions was over 50%, and even higher (about 90%) when more liberal definition of an abnormality or intravascular sonography was used. There is an interesting overview of what was learnt at http://www.msnetwork.org/ccsvihistory.htm#divergent
Mid 2014 to 2017  – Building Upon what was learnt
Subsequent research addressed these shortfalls in a variety of ways. Supported by the newly developed MEM-net process, we saw prevalence levels (via non-invasive techniques) at around 84%. Invasive techniques including the use of IVUS further extended these prevalence parameters.

During this period we began to hear more about the outcomes of clinical trials and the long term follow up of those successfully treated for CCSVI conditions. Details are at http://www.msnetwork.org/results/ccsvibenefits.htm#evidence

In August 2016 the 2016 edition of the Oxford Textbook of Vascular Surgery featured a full chapter (chapter 10.8) 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.

In 2017 a new diagnostic procedure became available to measure venous flow  This new non-invasive method provides a precise picture of the heart-brain axis .. like an EKG readout.  It is, or it isn't, normal. This will help end the diagnostic controversy of CCSVI. It will also help to clarify who should be looked at further with venogram. It can also be used as a follow-up method for patients after venoplasty treatment.
Safety of Angioplasty
In November 2011 HealthPACT (Australia’s peak Health Policy Advisory Committee on Technology) released a Brief relating to the role of Percutaneous Venoplasty in treating vascular irregularities experienced by people with multiple sclerosis. In doing this it observed that "percutaneous venoplasty (per se) is an established, routine procedure, with a proven safety and efficacy". More about safety issues and CCSVI http://www.msnetwork.org/ccsvihistory.htm#safety
Translating what is being learnt into patient Benefits - Access is now the Key Issue
The ongoing clinical trial being undertaken at the Alfred Hospital addresses all of the foregoing topics - it also provides a world class body of expertise capable of providing guidance on key issues. At the same time there is an urgent and concurrent need for what is being progressively learnt to be translated into patient benefits. That is what Kerri Cassidy's advocacy is all about.

A patient-centred, standards based, national process enabling ready access to cardiovascular (including CCSVI) screening across the MS population is needed. There is an associated need for individual guidance about options for best managing the screening outcomes.  No new medical procedures or new medications are involved. Find out more
http://www.msnetwork.org/caution.htm#needed
Quick Reference Guide
A Quick Reference Guide relating to the aforementioned topics (and more) is at http://www.msnetwork.org/action/ccsvi-questions-answers.htm

Beyond the Horizon
While associations between vascular irregularities and MS progression are long known it is only in relatively recent times that a series of extraordinary research breakthroughs have attracted the attention of those diagnosed with MS and those entrusted with their care. Text books are being rewritten and teaching Universities have identified neurovascular learning as the way of the future. As with all change this significant "shift in emphasis" is not welcomed by all - especially those who may have significant investments in maintaining the "status quo". Leadership at a variety of levels is vital. The regular HoriZonsSCAN news updates can be one way of expanding knowledge horizons - see http://www.msnetwork.org/news

RM3400MS
   
     
 

 
 
 
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