The Ministry of Health has approved reimbursement for a life-saving bone-marrow transplant that saved the life of a five year-old Saskatoon boy.
Health Minister Paul Merriman met with the Finn family Monday morning to inform them of the province’s decision. When Conner Finn was four, he was diagnosed with adrenoleukodystrophy ALD, which is a rare condition that damages the membrane that covers the nerve cells in the spinal cord and brain. There isn’t a cure for ALD , but a bone-marrow transplant at an expert center can prevent damage and halt the disease if performed early on. Finn received the life-saving transplant in Minnesota at the ALD Center of Excellence.
Andrew McFadyen, Executive Director of The Isaac Foundation, an advocacy, research and family support organization that specializes in rare diseases says the province will cover the $823,000 cost associated with the procedure.
Health Minister Paul Merriman says the right decision was made. “I wanted to take the time to be able to come to the right decision on this and I do feel that I did come to the right decision, there was some other information that the Finn family had brought to me last week that I needed to verify and digest and I did that certainly over the weekend and reviewed it and came to the decision.”
The Ministry of Health will be looking to creating a rare disease strategy according to Merriman, he added that he would also seek input from the Finn family. “The Finn family has offered and I actually discussed that with them on doing a rare disease strategy is this something we need to do? They willingly offered that they would like to participate in that if they could and I encouraged them that we would reach out and touch base with them cause I would like to hear it from the parents perspective.”
Opposition Leader Ryan Meili was happy to see the Finn family receive the reimbursement. He added that he was disappointed that it took a lengthy process.
With files from CJWW