6 October, 2015 mcfadyena

Funding For Rare Disease Treatment Denied, But Health Ministry Will Reconsider

The executive director of an advocacy group for rare diseases like Morquio Syndrome is puzzled as to why access for treatment has been denied for 3 Saskatoon siblings.

Andrew McFadyen, from the Isaac Foundation, along with the children and their father Amir Akhter spoke with Saskatchewan’s Health Minister this morning (Mon) in hopes of changing his mind.

McFadyen says the file on this case was sent to Ontario for review by only one person with no opportunity for different points of view, so today, he took the opportunity to speak to Dustin Duncan about why he should reverse the decision.

He adds that the Akhter family first requested access to provincial funding in March of 2014 and although the treatment wouldn’t cure the children, it could dramatically halt progression of the disease.

Dustin Duncan has said he will have another look at the case, but no date has been set for a decision.

The treatment is expensive at approximately $300,000 per year per child, but McFadyen says you could also argue that the cost of dealing with the effects of the disease when not treated could be similar when considering hip surgeries, corneal replacements, medical appointments, and other costs.

Duncan says the treatment costs $500,000 per patient.

There is a 2 year old in the province that has funding for treatment, which Duncan says is because the belief is that it’s more effective for children under 5.

McFadyen disputes that saying there is no data that actually proves that to be true.

SOURCE: http://www.saskatoonhomepage.ca/index.php?option=com_content&view=article&id=69454:funding-for-rare-disease-treatment-denied-but-health-ministry-will-reconsider&catid=61&Itemid=179

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