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  Multiple Sclerosis Network of Care Australia

A Voice for People Affected by MS


Better Vascular Protection needed for those  with MS    

Access to comprehensive Vascular Screening is Essential     
More about MS and Vascular Issues News Headlines Quick Reference Guide
Cardiovascular Diseases in Australia

Australia's National Strategy for heart, stroke and vascular health provides a blueprint for improving the cardiovascular health of Australians and reducing the prevalence of heart, stroke and vascular disease. Priorities for national action include developing information and tools to support consumers and general practitioners to match treatment to the level of risk of future heart, stroke and vascular events.

The Australian Heart Foundation describes cardiovascular disease (CVD) as encompassing heart, stroke and blood vessel diseases. It affects one in six (16%) Australians and is the single leading cause of death in Australia. Despite improvements over the last few decades, it remains one of the biggest burdens on the Australian economy.
CVD was the main cause for 480,548 hospitalisations in 2013/14 and played an additional role in another 680,000 hospitalisations. It is only during the past decade that long term studies have identified significantly higher prevalence levels (up to 80%) across MS populations. In terms of circulation problems it is established that in people with MS blood flow takes double the time when compared with normal people - pre-empting a range of significant problems. Details of related MS research outcomes follow:
Our Primary Concern
On 6 June 2017 the Network advised the Australian Health Minister ''while we overwhelmingly support the action priority of “developing information and tools to support consumers and general practitioners to match treatment to the level of risk of ….. vascular events’ as best we are aware no such national guidance has yet been provided by the Australian Government in relation to the extensive cardiovascular risks now known to exist across the multiple sclerosis community".
A more effective approach to chronic conditions and their risk factors
In his reply of 14 July 2017 (ref MC17-010592) the Minister, the Hon Greg Hunt MP highlighted the role of the National Strategic Framework for Chronic Conditions in moving away from a disease specific approach to working towards a more effective approach to chronic conditions and their risk factors. By way of example he referenced the role of the Royal Australian College of General Practitioners in developing related GP education and training materials
Those with Multiple Sclerosis are more susceptible to Cardiovascular Risk Factors
On 11 March 2016 the Journal of Vascular Medicine and Surgery, when reporting on the outcomes of a meta analysis (3842 studies from 1830 to 2015), said that  "Patients with MS have more cardiovascular risk factors, an increased risk for ischemic stroke and an increased risk of venous thrombosis and pulmonary embolism.
Vascular comorbidities are common in MS and adversely influence disability. There is evidence suggesting that MS patients are more susceptible to cardiovascular risk factors than healthy controls.
Cardiovascular Disorders are Under Recognised
Concerns that the prevalence of other chronic conditions (including cardiovascular conditions) may be common in people newly diagnosed with multiple sclerosis (MS) were also highlighted in a study of 140,020 people (23,382 with MS) and a matched control group of 116,638. This study was published on  in the online issue of Neurology, the medical journal of the American Academy of Neurology. 
Greater Awareness is needed by Doctors and for those with MS
Study author Ruth Ann Marrie, MD, of the University of Manitoba in Winnipeg, Canada, and member of the American Academy of Neurology said "Also, studies have shown that MS may progress faster for people who also have other chronic conditions, so it's important for people and their doctors to be aware of this and try to manage these conditions".
Ruth's observations were supported by William B. Grant, PhD, of the Sunlight, Nutrition and Health Research Center in San Francisco, Calif., when, in relation to this study said "Smoking, obesity, low vitamin D and low omega-3 fatty acids have been shown to contribute to the severity of MS and, in various combinations, these other illnesses as well. Doctors will want to stress to those with MS the importance of correcting these problems. 
Neurologists Cautioned
Added weight to these issues is evidenced by recommendations referenced In December 2015 edition of the Neurologist that cautioned Neurologists "to be aware of the clinical presentation and pathophysiology of cardiovascular dysfunction in MS so as to ameliorate cardiovascular symptoms, prevent cardiovascular complications, and choose therapeutic agents that do not worsen underlying cardiovascular disease''. Researchers went on to say ''Cardiovascular dysfunction in MS is incompletely understood and likely under recognized''.
An Increased Risk of MS Disability Progression
The January 2010 edition of the most highly read peer reviewed neurology journal, Neurology, reported on a Canadian study on 8,983 pwMS, that concluded that vascular  comorbidity, whether present at MS symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in MS and that the impact of treating vascular comorbidities on disease progression deserves investigation.
The study demonstrated that the median time between diagnosis and a need for ambulatory assistance was 18.8 years in patients without vascular problems and 12.8 years in patients with vascular comorbidities - In other words, pwMS, who also have a vascular problem, experience a progression in MS issues at a significantly greater rate than those without known vascular issues. The researchers also observed that "treatment of vascular comorbidities may represent an avenue for treating MS" - read more
Misdiagnosis/Under diagnosis causes Potential Harm
A study published on 10 May 2012 found that it is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease.  Dennis Bourdette, M.D., the senior author of the study, said such misdiagnoses not only meant patients were getting expensive and potentially harmful treatments they didn't need, but they were also not getting the appropriate treatment for the diseases they may have.
New Knowledge further compounds the scope of MS Cardiovascular Problems
Running in parallel with these findings is new knowledge that more than 80% of the MS population (many thousands have been tested across all MS sub-types) have an underlying, but frequently treatable, vascular disorder that negatively impacts on blood flow/circulation. Known as Chronic Cerebro Spinal Venous Insufficiency (CCSVI) it is associated with many of the most common symptoms identified by those living with MS. CCSVI conditions can be mild, moderate or severe and are not exclusive to MS i.e Parkinson's and Meniere's diseases - find out more.
Vascular Text Books are being Rewritten
The 2016 edition of the Oxford Textbook of Vascular Surgery a new chapter (chapter 10.8) on Chronic Cerebrospinal Venous Insufficiency that should put to rest early scepticism and misinformation regarding CCSVI bloodflow related issues. 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, 
Australian Government acknowledges newly discovered  MS Cardiovascular Risk Factors
In June 2016 the Liberal/National Coalition also 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.
Treatment Delayed is Treatment Lost
While this is an important step 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.
Lóng Term Benefits of treating CCSVI conditions via Angioplasty
Benefits The long term benefits of treating MS vascular irregularities via Percutaneous Venoplasty (PTA) are attracting significant global attention. One much reported example is the Italian 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.
Protecting the Vulnerable
A July 2015 submission to the Australian Parliaments Health Committee (submission 15) further emphasised this issue as follows ''Beyond the business model there is the issue of how best to protect vulnerable often seriously ill people with MS, from potentially overzealous commercial marketing practices. The Reference Group anticipated this eventuality in 2011 when it recommended that 'screening for possible vascular irregularities be undertaken during the diagnostic stages of MS as a prerequisite to qualifying for immunotherapy subsidies'.. HealthPACT also referenced this recommendation.
Service Providers, Advisory Bodies and Elected Representatives - Cautionary Guidance
Guidance It makes good sense for the aforementioned developments and associated cautionary guidance to be taken on board by Australian MS organisations, Medical Specialists, GP’s, Parliamentary Representatives, Regulatory bodies and all of those whose actions and decisions may impact on the well-being of those living with MS. 
Of utmost importance is the need for people diagnosed with MS to routinely have access to up to date unbiased information that enables them to play a lead role in determining treatment options appropriate to their specific circumstances and expectations.
 What is Needed  - Australian Parliament has a Facilitating Role
There are two separate but related issues about which consensus is urgently needed - further delays/systemic roadblocks only exacerbate an already exponential problem. No new medical procedures or new medications are involved.
First is the need for a national process enabling ready access to cardiovascular (including CCSVI) screening across the MS population. Second is the need for individual guidance about options for best managing the screening outcomes. Angioplasty can be one of those options.  The following draft patient-centred Implementation Strategy has been developed to guide this process.
In March 2016 two of Australia's nationally focused MS consumer organisations (Multiple Sclerosis Network of Care Australia and CCSVI Australia) jointly commenced a national program aimed at creating greater political awareness of the aforementioned entirely unsatisfactory (and potentially dangerous) situations. The program included an Open Letter letter to all elected representatives.
A Draft Patient Centred Implementation Strategy
This program highlights the case for better protection for those diagnosed with MS through better focused government policies including regulatory practices.
An earlier submission (July 2015)  to the Australian Parliament titled ''Treatment Delayed is Treatment Lost'' clearly identified the ways in which this impact might be minimised through appropriate and highly cost effective government policy and program interventions. Shortly stated it sought the support of the Parliament to assist in accelerating the processes whereby what is being learnt about the impact of cardiovascular issues on MS progression is better translated into benefits for patients and reduced government outlays.
In so doing it consolidated wide ranging parliamentary dialogue since 2011 whereby the scope of such interventions is identified as:
  1. Funding support (on a dollar for dollar basis up to a maximum of $250,000) for the already commenced trial at the Alfred Hospital in Melbourne. Described by MS Australia as ''vital research'' this trial has since received international recognition and endorsement.

Apart from the specific research associated this trial, the expertise being attracted to what is being learnt is positioning Australia well for the diffusion of knowledge of this type across the broader Australian (and International) medical professions. Based upon what has already been demonstrated it deserves far better strategic understanding and support at the highest political levels. Significant reductions in government outlays accompanied by other economic benefits are also involved.  
  2. Encouraging additional clinical trials, with a specific focus on the role of Percutaneous Venoplasty in addressing vascular irregularities, and the consequential relief of most common CCSVI symptoms frequently experienced by many diagnosed with MS.
  3. The implementation of an Australian National Monitoring System (ANMS) that includes retrospective opportunities for the registration/recognition of those that have/are being treated and captures relevant information. This recommendation has also been flagged by HealthPACT
  4. Ensuring the availability of Medicare rebates for all recognised CCSVI related procedures.
  5. The ANMS to also enable screening and treatment to be offered to those who may so benefit from symptom relief – over and above those participating in more comprehensive clinical trials
  6. Screening for vascular irregularities (including CCSVI conditions) be mandatory during the diagnostic stages of MS. The Australian government could tie its immunotherapy subsidies to requirements that ''information be provided to individual patients about possible vascular irregularities in MS, and vascular (including CCSVI) screening be undertaken''. Authorising general practitioners to refer patients for Doppler ultrasound CCSVI screening may be a key step in achieving this''. Also flagged by HealthPACT.

The anticipated Outcomes of Such Policies were described as

  1. Encouraging/facilitating improvements in the prevention and management of chronic outcomes through the provision of more appropriate primary care.
  2. Better targeting of Medicare services
  3. Better access to CCSVI diagnostic services
  4. Expanded education for general practitioners and those diagnosed with MS
  5. Appropriate access to specialist medical practitioners in the field of neurovascular medicine
 On the fiscal side of things there are significant benefits associated with
  6. A diminishing reliance on welfare, pharmaceuticals and NDIS
7. Increased workforce participation
  8.  Revisiting research funding priorities for these and associated chronic diseases

There is also a need for appropriate infrastructure/expertise, particularly in regional and rural Australia.  In the overall scheme of things, there will be progressive but significant reductions in Government outlays - even if the benefits were confined to 20% of the Australian MS population (around 60% is a conservative estimate).

Resistance to Change

The submission includes the observation ''not all of these changes will necessarily be well received. All change impacts differently upon different stakeholders''.

The entire submission (Submission 15 provided under Parliamentary Privilege) is available at    







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