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 advisors, to make informed decisions about possible treatment options.
While this situation has been highlighted in the Australian Parliament on several occasions over the past 5 years – it is yet to be translated into policies and programs that effectively address what has become a very unhealthy situation..
Patient Centred Feedback is Vital
Feedback (since 2011) from more than 3,000 Australian families, friends, carers and service providers has inspired the development of this Open Letter (more than 800 since April 2016).
How your Voice can be Better Heard
Here is the message that we all need to convey to our individual parliamentary representatives requesting confirmation of their position and that of their party. Please download and amend to highlight your specific circumstances.
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’’ Details of broadly based recommended policies and programs were also referenced,
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 should be an important step in the right direction
Kerri Cassidy wins important Australian Award
In December 2016 Judges said ''We are thrilled to announce that CCSVI Australia CEO, Kerri Cassidy, is the winner of the 2016 Award for Excellence in Justice and Rights Protection - for her long-term commitment to promoting justice and rights protection for people with disability. 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 has 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”
IFurther 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 other chronic conditions (including cardiovascular conditions) may be common in people newly diagnosed with multiple sclerosis (MS). While the scope of this study does not appear to include chronic cerebro spinal vascular insufficiency (CCSVI) it does ring important warning bells.
Separate research identifies up to 80% of the MS population as having CCSVI related comorbidities - adding even greater weight to our concerns about underlying cardiovascular disease
Drawing a Line in the Sand
Since the early 1990's 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
For some further insightful commentary by Kerri see http://www.msnetwork.org/expectations/ccsvipatient.htm
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