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William & Olga Massart Dump $1.75 Million Outside Drug Company
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by alia_d | July 15, 2009 at 04:01 pm
284 views | 2 Recommendations | 2 comments
William and Olga Massart, a Belgian couple, dumped $1.75 million (1 million euros) outside Shire Pharmaceuticals, a British pharmaceutical company, because Shire Pharmaceuticals refuses to sell the Massarts a drug to save their sick child, Sandra Massart.
Their eight-year-old is one of only 2,000 sufferers worldwide of the deadly neurological disease metachromatic leukodystrophy.
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Sandra will go deaf, lapse into a vegetative state within months and die within a few years if she does not get urgent treatment.
According to the Massarts, Shire Pharmaceuticals previously agreed to sell the experimental drugs to save Sandra Massart at the price of $1.75 million. It took William and Olga Massart only two weeks to raise the funds they needed to buy the drug, which costs $90,000 per month and must be administered for two years, because the Belgian royal family supported their campaign.
However, the British company now says that it cannot produce enough of the drug and that it needs to keep its the supply it does have for clinical trials. Shire Pharmaceuticals also said that Sandra Massart cannot be included in the clinical trial for the drug because she is an unsuitable candidate.
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Most RecentMost Recommended Comments (2)
at 02:18 on July 16th, 2009
I saw on the news that the money they dumped at Shire was fake, to represent the money he had raised. It wasn't the actual money.
at 10:38 on July 23rd, 2009
As parents of two children with MLD we very much empathize with the Massarts and we understand their passion to seek help for their dying daughter – they are but one of the hundreds of families we know losing loved ones day by day to MLD, a very cruel rare terminal disease. Unfortunately, this story is ripe with emotion and lean on facts (the press did not do their homework). There is no cure today, the experimental drug has not yet been proven to have any human efficacy, and the "safety" trial is the first step in a sequence of human trials. For facts on HGT-1111 and to see Shire’s 16-July public statement go to:
http://mldfoundation.eu/research-shire.html
Our hearts go out to the Massarts and to all the families dealing with MLD.
Dean Suhr
President
MLD Foundation
We are a non-profit supporting families around the world. “We C.A.R.E.” - facilitating Compassion for families, increasing Awareness, influencing Research, and promoting Education for metachromatic leukodystrophy.