Watch CBSN Live

UPDATED: Shire Accused of Depriving Family of Metazym Even Though They Raised €1M to Buy It

A Belgian family has accused a Denmark drug company of reneging on a promise to sell them a supply of Metazym for their fatally ill daughter and instead giving it to Shire. Shire has declined to supply the family with the experimental drug, saying it does not have enough of the substance, which it is using in an ongoing trial.

William Massart -- who raised €1 million to buy the drug -- believes Metazym is the only hope for his daughter Sandra, who will eventually die of Metachromatic Leukodstrophy if she is untreated. The Basingstoke Gazette reports:

The family claims they were promised the drug 18 months ago by a small Danish company if they raised one million Euros.

... the family raised the cash but by then the drug had been sold to Shire plc.

Shire said they are unable to supply the drugs claiming that it needed the whole stock for further trials.

Shire said:
We fully understand the seriousness of Mr Massart's situation but it is a very long, complex process creating the replacement enzyme and our manufacturer is unable to make more than for the nine children currently on the trials. We are looking at all manufacturing possibilities, including bringing it in-house. But that would take two to three years. We are not refusing to sell Mr Massart the drug. We just do not have enough of it.
Massart believes Shire is "morally responsible for the promises made by the company they bought the drug from," he told the London Evening Standard.

But which was the company that allegedly promised the Massarts the drug and then sent it to Shire? Neither report says, but this press release indicates it was Denmark's Zymenex A/S. The company did not immediately respond to BNET's request for comment. We'll update the post when we hear from them.

UPDATE: The family confirms the company was Zymenex