People with Multiple Sclerosis need access to Cardiovascular Screening
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Dear Australian Health Minister and all Elected Representatives
An Open Letter
We are people living with a Multiple Sclerosis diagnosis. In recent times researchers have cautioned that there is a high incidence of (undetected) cardiovascular disorders in people diagnosed with this condition – left undetected they warn that such incomplete diagnoses not only causes patients potential harm but cost health care systems (including governments) untold millions of dollars a year. Cost/benefit factors are highlighted at;
Australia is no exception..Large population studies confirm significant associations between the most common multiple sclerosis symptoms and vascular irregularities.
Potential Harm to Patients
Delayed or potentially incomplete diagnoses not only means that we may be getting expensive and potentially harmful treatments we don't need, but we are also not getting the appropriate treatment for the conditions we may have. Many in the Australian MS community are currently in this position. This situation is compounded because of extremely limited access to relevant and comprehensive independent cardiovascular assessment procedures..
Informed Patient Centred Decision Making is impeded.
Without such access many of us are not able, in conjunction with our medical advisers, to make informed decisions about possible treatment options.
While this situation has been highlighted in the Australian Parliament on several occasions it is yet to be translated into policies and programs that effectively address what has become a very unhealthy situation...
We believe that our concerns are consistent with Australia's National Strategy for heart, stroke and vascular health that provides a blueprint for improving the cardiovascular health of Australians by implementing national action to support consumers and general practitioners to match treatment to the level of risk from vascular events. Our experience is that the high incidence of vascular problems among those with MS is yet to be properly addressed by this Strategy.
Draft Policies are on the Table
During March 2016 two of Australia’s widely recognised consumer focused Multiple Sclerosis organisations (the Multiple Sclerosis Network of Care Australia and CCSVI Australia) jointly wrote to the Leaders of all Australian Political Parties on our behalf seeking clarification of each Party’s policy position on this matter.
They specifically sought the bipartisan support of the Parliament ‘’to assist in accelerating the processes whereby what is being learnt regarding cardiovascular irregularities and MS is better translated into benefits for patients and reduced government outlays’’
Acknowledgement by Australian Government
On 29 June 2016 the substance of these representations was acknowledged by the Australian Coalition Government - while much more is needed this was an important step in the right direction
Further Important Warning Bells
A study of 140,020 people - 23,382 with MS and a matched control group of 116,638 - confirmed our concerns that the prevalence of chronic cardiovascular conditions is common in people with multiple sclerosis (MS). Separate research identifies up to 80% of the MS population as having CCSVI related comorbidities.
Drawing a Line in the Sand
Since the early 1990's many neurologists have underpinned the management of Multiple Sclerosis on the belief that it is strongly associated with an overactive immune system. Treatment invariably involves''dampening down'' the immune system via a diverse range of immuno suppressant drugs. The global market for these drugs is approaching $20 billion p.a. - much of which is achieved through government subsidies.
The highly respected National MS Society (USA) drew an important line in the sand in relation to these drugs when it said ''there are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function".
The over-riding Issues
The over-riding CCSVI issues are about Access and Protecting the Vulnerable.- see http://www.msnetwork.org/evidence/index.htm
Your Commitment is Important to Us
We would greatly appreciate your bipartisan support in progressing what is a very ‘’unhealthy’’ situation.
This Open Letter is facilitated by
Peter Sullivan and Kerri Cassidy, on behalf of
CCSVI Australia Reference Group
PO Box 10, Blackburn, VIC, 3130
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