14 March, 2013 mcfadyena

Drug Company's Decision Gives Trent Hills Father Hope

Experts will review research data on rare disease

Northumberland NewsTRENT HILLS – Months of lobbying capped by an intense advocacy campaign conducted online have paid off for Andrew McFadyen: Johnson and Johnson has agreed to form a medical advisory panel to determine whether one of its medications could help his son, Isaac, and others who suffer from a rare disorder.

“That’s incredible news for our families and our kids,” Mr. McFadyen said. “We’re pretty pleased.”

The elementary school teacher has been relentless in trying to persuade the pharmaceutical company to undertake a clinical trial of an anti-inflammatory drug it makes to treat a bladder condition.

Research involving rats funded by Mr. McFadyen’s Isaac Foundation indicates the medication could also benefit people with MPS, a group of disorders caused by an enzyme deficiency. Its symptoms vary but in the case of his eight-year-old son, MPS IV has stunted his growth, restricted his mobility and affected his breathing.

Mr. McFadyen received word of Johnson and Johnson’s decision from the company’s chief medical officer for its pharmaceuticals division, Dr. Amrit Ray, last Saturday. They talked several times over the phone and are to meet in person in a couple of weeks.

Isaac “was pretty excited to hear the news,” he said.

Mr. McFadyen said “almost every MPS specialist in the world … the who’s who” of the profession, will sit on the panel. They will review the research data and recommend if a clinical trial is warranted.

He’s “very confident” they will but should they decide against it, “that’s also in the best interests of our kids. I would never want to move forward with something that’s unsafe or not going to help.”

Mr. McFadyen said a public advocacy campaign he mounted recently resulted in “hundreds and hundreds of people sending e-mails” to Johnson and Johnson in support of his efforts.

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