Dutch told pharma giant to cut cost of Orkambi by 82 per cent
CAMPAIGNERS have called for the company behind cystic fibrosis drug Orkambi to strike a deal with the NHS after the Daily Express discovered Vertex had slashed the price of the drug in the Netherlands.
This newspaper understands Orkambi was initially offered to Dutch doctors at £160,000 per patient per year. The Dutch spoke of an 82 per cent reduction, putting the cost at just £28,800 per patient per year.
Speaking exclusively to the Daily Express Bruno Bruins, Holland’s Minister for Medical Care, said: “The major obstacle was the sky-high price asked by the pharmaceutical company without willingness to give any explanation on this high price, or the true production costs.
Explanation
“In order to be costeffective, the price had to be lowered by as much as
82 per cent.”
It took three rounds of negotiations before the Dutch reached agreement on pricing
‘NO MORE LIVING IN FEAR AND PAIN, MY BOYS ARE JOYFUL’
A SINGLE mother of two has told of the suffering before her two sons were given the CF wonder drug Orkambi.
Dutch teacher Chantal Welling was housebound for two years because of the stress and burnout from dealing with the genetic disease.
And her boys Keano, 20, and Miklo van Boogaart, 17, wanted to end their lives because of the pain and suffering it caused.
Chantal, 46, from Brunssum, with Vertex in October 2017. Mr Bruins, 55, credits a TV interview with a CF sufferer as a turning point.
He said: “What helped was one CF patient who came on national television and told she agreed with the minister that the government and the tax/premium payers should not accept this high price without any explanation by the pharmaceutical company.”
He added: “This is not an issue between the government and the patients. We feel this is an issue between society [people and government] and pharmaceutical companies near Maastricht, said: “It was a life with pain and anxiety versus almost a normal life.
“For people who do not feel this, it is difficult to understand that things like breathing, eating and sleeping is a struggle every minute of every day.
“Living in fear and pain has changed and now they live a joyful life.
“I wanted to shout, scream, dance – my heart exploded from joy when my boys got Orkambi.” asking absurd prices for medicines just because they think they can.”
Holland does not provide free, universal healthcare but instead uses private health insurance companies with the government deciding what is in the insurance package. Since the deal with Vertex was struck Orkambi has been part of the package.
Last year NHS England made a “final” five-year £500million-plus offer to the drugs giant, but it was turned down.
David Ramsden, chief executive of the Cystic Fibrosis Trust, said: “Children and adults with cystic fibrosis should not be made to wait any longer. Every day means more risks to their health and the heartbreak of knowing that if they lived in other countries they would now have access to this life-changing medicine.”
Rebecca Hunt, vicepresident, corporate affairs, international, Vertex Pharmaceuticals, said: “Price negotiations in specific countries and their outcomes are confidential and, given the vast difference in health systems, they cannot be compared between countries.” Mon-Thurs 8.30am-7pm, Fri till 5pm, Sat 9am-3pm