Vertex Pharmaceuticals and English health officials have for years been unable to strike a deal for cystic fibrosis drug access, but Vertex’s new deal with neighbor Scotland may pile on the pressure.
The drugmaker and Scottish authorities entered a five-year agreement under which 400 cystic fibrosis patients will have access to Vertex’s Orkambi or Symkevi. Under the deal, Vertex will collect real-world data to support any future drug submissions.
In a statement, Vertex International Senior Vice President Ludovic Fenaux thanked Scottish authorities “for their partnership and the collaborative and flexible way that we have worked together to find this access solution.”
With the deal, Vertex’s drugs are have scored reimbursement in 17 countries, but notably not in England. Company execs and health officials there have been trying to guarantee access for years, but so far, the back-and-forth hasn’t yielded a deal.
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Tensions flared last year when Vertex CEO Jeffrey Leiden wrote to former Prime Minister Theresa May that England’s stance on the meds devalues patient lives and threatens the U.K. biopharma system. This spring, Leiden and Stuart Arbuckle, Vertex’s chief commercial officer, traveled to England for a hearing at the U.K. Parliament’s Health and Social Care Committee. Following that hearing, Leiden met with Britain’s health secretary Matt Hancock, but the sides still haven’t reached an accord.
Weeks later, in response to an inquiry from the hearing, Vertex disclosed that it destroyed 8,000 expired Orkambi packs as the negotiations dragged on, further outraging patients and advocates.
With news of the deal in Scotland, advocates and others again ramped up pressure on officials in England to reach a deal.
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Vertex’s Orkambi, which won European approval in 2015, costs £104,000 per patient per year in the U.K. before discounts, according to documents from the National Institute for Health and Care Excellence. Last year, British officials offered £500 million over five years and £1 billion over 10 years for access to all of Vertex’s cystic fibrosis drugs, but the company said that offer “does not take into account the vast time and resources invested” to develop the drugs. About 10,500 people in the U.K. have cystic fibrosis, according to the Cystic Fibrosis Trust.
