Agreement on costs for rare drug treatment

Summary

Federal health minister Laurette Onkelinx last week announced an agreement with the manufacturers of a drug prescribed for a rare and serious illness but said she felt “blackmailed” by the company’s methods.

Federal health minister Laurette Onkelinx last week announced an agreement with the manufacturers of a drug prescribed for a rare and serious illness but said she felt “blackmailed” by the company’s methods.

As reported last week, the US-based pharmaceuticals company Alexion used PR executives posing as patient representatives to put pressure on the Belgian government to agree to reimburse the cost of Soliris, an experimental treatment for the immune system disorder atypical haemolytic-uraemic syndrome. The company centred its PR campaign on a seven-year-old boy named Viktor from Erembodegem in East Flanders.

The campaign had the desired effect, with widespread public outrage that Viktor’s life could be subject to budgetary constraints. Onkelinx was forced to sit at the negotiating table to find a solution.

Soliris, an infusion delivered twice a month at a cost of €9,000 per treatment to Viktor and 24 other patients in Belgium, will be reimbursed from 1 July, with Alexion bearing the costs of all treatments between now and then.

According to the latest figures, the price of reimbursing the cost of all medicines in 2011 came to €4 billion, of which €210 million was accounted for by drugs for rare conditions – defined as any serious condition affecting fewer than five people in 100,000 in the European Union.

“I’m happy, for Viktor’s sake as well as for the other patients who were waiting on this agreement,” Onkelinx said. But “I condemn the using of children through their parents,” practised by Alexion. “That cannot be accepted.”

Viktor’s parents were of course happy with the outcome. “Obviously we’re extremely pleased that the minister and Alexion got back around the table and reached this agreement,” said Viktor’s father, Geert Ameys.

Agreement on costs for rare drug treatment

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