Treatment Required Immediately For Ailing New Brunswick Boy; Family Elated With News

“It doesn’t feel real.  We have hope again for our son.” – Carolle Mazzerole**, Morgan’s Mom**

The Minister of Health in New Brunswick has ordered a full review of his recent decision to deny access to a life-saving medication to 10-year-old Morgan Doucet.  Morgan suffers from MPS IVA (Morquio Syndrome) and requires the life-saving treatment immediately in order to halt further progression of his devastating disease.  The family was informed in October that Morgan’s application for the life-saving drug was denied and immediately asked how they could appeal the decision.  Health Minister Victor Boudreau informed the Canadian Press this evening of the new review.

Andrew McFadyen, Executive Director of The Isaac Foundation, an advocacy, research, and family support organization that specializes in MPS related diseases, was happy with the news.  “We are very pleased with this development – it’s incredible news for the family.  For Morgan, I truly hope that this review takes a serious look at the vast amount of available evidence that exists both in this country and internationally, and I’m calling on the Minister to ensure the review is fair, transparent, and that the opinions and recommendations of multiple experts that deal with this disease and treatment first-hand are considered.”

McFadyen applauds the developments in New Brunswick and the willingness of Minister Boudreau to seek another opinion.  The Isaac Foundation has requested that a panel of 3 or 5 international and Canadian MPS experts conduct the review.  “This way, we have the opportunity for rigorous debate about the drug and its efficacy, and any decision made will always be a majority ruling.”

Jamie Myrah, Executive Director of the Canadian MPS Society, also hopes the new review will be thorough and transparent, free from Ministry bias and interference.  “The Canadian MPS Society also calls on the Minister to ensure a fair, objective, and transparent review of Morgan’s application for treatment.  It is our hope that the true experts – experts from around the world that deal with this disease, experts that treat this disease on a daily basis - have an opportunity to see the baseline data and weigh in on the merits of providing therapy for Morgan.  We also feel like it’s imperative that the reviewers are identified to our organizations, again so we can be sure the process is as transparent as possible.  We want to make certain they are using the true experts to look at this, unlike the initial review that took place.”

Morgan’s mother, Carolle Mazzerole, was elated by the developments.  “We’re thrilled.  It doesn’t feel real.  We have hope again for our son.  I pray that the new review is done quickly and is fair for our Morgan.  The last review took a year for us to receive a decision and Morgan can’t wait much longer.  I really want to say thank you to Minister Boudreau for revisiting this decision, and a sincere thanks to our MLA, Jake Stewart, for his incredible support for our family.”

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For more information about this topic, or to schedule an interview with Andrew McFadyen, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.  The Isaac Foundation can also arrange interviews with parents of patients currently receiving this treatment in Canada.