Pompe disease campaigner is also drugs company consultant

DutchNews.nl, Tuesday 07 May 2013

A woman who has carried out a high-profile campaign for the rights of people suffering from muscle disease Pompe is also a consultant for the pharmaceuticals firm making the drug, the Volkskrant reports on Tuesday.

Maryze Schoneveld-Van der Linden suffers from the rare disease and in July 2012 hit the headlines in the Netherlands when the government was considering stopping paying for the drug Myozyme, made by pharmaceuticals firm Genzyme.

She gave numerous interviews explaining how her life had been improved by the drug, which costs between €400,000 and €700,000 for a year. 

The Volkskrant states that Schoneveld is also a consultant for Genzyme, a fact which she did not mention in the interviews. Her dual role came to light in Belgium when she urged the parents of a seven-year-old boy with a rare kidney disease to seek publicity when payment of his medicine was threatened.

Drugs company

But Schoneveld was acting as a middleman between the drugs company Alexion and the family – a fact the family of the boy claim they did not know.

Genzyme spokeswoman Mignon van der Westerlaken denied the company had urged Schoneveld to seek publicity for her cause in the Netherlands, saying she had been paid to brief staff about the disease and make a booklet of patients’ stories. 

‘Her work as a consultant for us is not relevant to the media. That is a different task,’ Van der Westerlaken said.