The head of pharma.be, the Association of the Pharmaceutical Industry, has criticised a drug manufacturer that employed a PR company to stoke up public controversy over a seven-year-old boy with a rare disease. The action was an effort to force the federal government to pay out millions of euros every year for experimental treatments. Leo Neels, director-general of pharma.be, said the company’s approach was “unacceptable”.

The head of pharma.be, the Association of the Pharmaceutical Industry, has criticised a drug manufacturer that employed a PR company to stoke up public controversy over a seven-year-old boy with a rare disease. The action was an effort to force the federal government to pay out millions of euros every year for experimental treatments. Leo Neels, director-general of pharma.be, said the company’s approach was “unacceptable”.

Viktor, from Erembodegem, East Flanders, suffers from atypical haemolytic-uraemic syndrome, an immune system disorder caused by an E coli infection. The body destroys its own red bloods cells, which can lead to kidney failure. The disease affects mainly children, of whom there are only about a dozen in Belgium.

Treatment involves infusions every two weeks with Soliris, an experimental drug developed by the US company Alexion. Each infusion costs €9,000, but the drug is not reimbursed in Belgium by health insurers for Viktor’s condition – though it is for a different complaint. Soliris is reimbursed in the Netherlands and France. For the time being, the university hospital of the Free University of Brussels (VUB) is footing the bill for Viktor’s treatment.

Media coverage of Viktor’s case led to a petition and calls for federal health minister Laurette Onkelinx to overturn the negative advice of the committee that considers requests for drugs reimbursement. Supporters want the drug to be reimbursed for Viktor and the 12 other children in Belgium undergoing the experimental treatment.

Ends justify means?

Then it was discovered that Alexion itself had been behind the sudden rise in media coverage, through the Brussels PR consultants g+ europe. The agency had been asked to set up patients’ organisations in the Netherlands and Belgium for the sole purpose of provoking public controversy and putting pressure on governments to reimburse the high cost of Soliris – with success in the case of the Netherlands. The first contact with Viktor’s family had come from a member of the patients’ organisation in the Netherlands, a woman who is paid directly by Alexion. A Brussels lobbyist, also paid by Alexion, later helped the family gain the attention of the French-speaking media. He confirmed the existence of a concerted campaign. “In the end, the patients and the company have the same goal: getting the minister to come to an agreement with Alexion,” he told De Standaard.

Alexion is in talks with Onkelinx’s department, in an effort to reach an agreement over the price. “We feel like a football being kicked back and forward between the company that makes the drug on one side and the government on the other,” Viktor’s parents told VTM news. “We would ask both sides, talk to each other and come to some agreement. There are human lives at stake here.”

Neels previously defended the high cost of Soliris as a means of recompensing companies for research into treatments for rare diseases. “If Alexion indeed attempted to manipulate the parents, following its initial refusal to negotiate with the government, that is in breach of our ethics and our values,” he said. “We’ve never had to suspend a member yet, but it’s a sanction I wouldn’t rule out.”