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Butler raises inequity of treatment for NI Fabry disease patients

Ulster Unionist MLA Robbie Butler has said local Fabry disease patients are cruelly being denied a cheaper, less onerous treatment for the condition, despite one being available across the rest of the United Kingdom.

The Lagan Valley MLA said:

“Fabry disease is an inherited disorder which due to a genetic abnormality results in patients being deficient in an important enzyme in each of the cells in their body.

“People with Fabry disease are at risk of developing renal failure which ultimately may require dialysis or a transplant, heart failure due to thickening of the heart muscle, and strokes.

“It is a very serious condition, however thankfully there are treatments available to moderate the impact of the disease. This most commonly takes the form of replacing the missing enzyme through a drip every two weeks.

“Whilst I am glad that such a treatment exists, it’s a major life-long commitment - not only for the patient who is required to receive the drip, but also the local health service who have to administer it each time.

“In recent years a new therapy has emerged that would transform how local Fabry patients are treated. It takes the form of a simple oral tablet called Migalastat, taken on alternate days and it has been clinically proven to be just as effective as the enzyme drip replacement.

“Not only is the tablet as good as the drip - and as such puts far less burden on the patient and the NHS - it’s NICE approved, far cheaper and is already routinely available throughout the rest of the UK. Yet it’s not available here in Northern Ireland.

“That’s hugely disappointing as it is denying local patients the opportunity to receive a far less onerous treatment, as well as simply dismissing the obvious financial savings that would be achieved.

“I have already written to the Permanent Secretary in the Department of Health to raise the matter, however in the absence of a local Minister and Executive I am sceptical whether any action at all will be taken.

“This should be a common-sense decision. Yet for as long as it is being ignored or dismissed the longer local Fabry patients will continue to endure the current inequity of treatment compared to patients across the rest of the UK. That's just not good enough.”

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