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Lexington Company At Center Of Battle To Save 6-Year-Old

By Chief Correspondent Joe Shortsleeve, WBZ-TV
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LEXINGTON (CBS) — A Massachusetts company is at the center of a storm concerning the health of a six-year-old boy. An Illinois family says they need access to a drug now being developed by the company to save his young life.

The Fowler family is currently making a documentary about their battle to save Jack. His parents, Jason and Jamie, are fighting every day. Jack suffers from a very rare disease known as Hunter Syndrome. It eventually attacks the central nervous system. Currently there are about 500 children in this country afflicted with the disease.

“Typically these boys with this form of the disease only make it to the first decade of life,” mother Jamie told WBZ in an interview over Skype.

The Massachusetts pharmaceutical company is currently testing a drug in clinical trials to treat Hunter Syndrome. But they will not offer to it Jack. Why? Put simply, executives say they are not sure it works.

The CEO of Shire Pharmaceutical works out of the offices located in Lexington. He recently met with the family in Chicago to explain face-to-face the company’s decision.

In a statement to WBZ Shire Pharmaceutical says: “we are deeply sympathetic to the family who has requested our investigational drug for Hunter Syndrome. It is an unproven product, and we do not have sufficient data regarding the safety.”

Meanwhile, Jamie Fowler says: “I think it is unethical. I feel they are playing God.”

“To be honest, I feel a lot of it is driven by fear and profit and it is not about the life of a six-year-old boy,” Fowler said.

The federal government does allow drug companies to make investigational drugs available to families in certain cases.

“If it was their son or nephew or grandson I guarantee the outcome would be different,” Fowler said.

Shire Pharmaceutical on its website, explains in more detail why they are denying the drug. In short, executives suggest they need more evidence that it is effective.

There also appears to be concern treating someone outside of the current clinical trials could somehow interfere with the larger clinical program.

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