People with Multiple Sclerosis need better 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.
On 12 February 2021, the MS Network of Care and CCSVI Australia jointly provided the Australian Government’s Health Technology Reference Group (an advisory body for all Australian and New Zealand Health Ministers) with a ten year evaluation of what is being learnt regarding the role of Angioplasty in treating CCSVI conditions in MS. In doing this it sought advice about the role of the Health Technology Group in guiding all Ministers (and medical professionals) concerning the benefits for Venoplasty for those living with an MS diagnosis.
What makes this evaluation so significant is that it incorporates and respects the importance of the role of long-term patient centred qualitative benchmarks – something too frequently marginalised or understated by key decision makers.
Potential Harm to Patients
Delayed or potentially incomplete multiple sclerosis diagnoses not only means that we may be getting expensive and potentially harmful treatments we don't need, but we may also not getting the appropriate treatment for conditions we may have. Many in the Australian MS community are 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 properly informed decisions about the ongoing management and 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...
Our very real 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.
On 29 June 2016 some aspects of our representations were partially acknowledged by the Australian Coalition Government - while much more is needed this was a step in the right direction
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.-
Your Commitment is Important to Us
We would greatly appreciate your support in progressing what is a very ‘’unhealthy’’ situation for very vulnerable people living with an MS diagnosis.
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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