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Sam Boal/
Cystic Fibrosis

Drug company wants Simon Harris to intervene in row on life-changing drug Orkambi

The health minister said he wants “further engagement” between Vertex and the HSE.

Updated 9.50pm

THE COMPANY WHICH makes the cystic fibrosis drug Orkambi has called for Health Minister Simon Harris to directly intervene to allow patients to access the drug in Ireland.

The drug, which the National Centre for Pharmacoeconomics (NCPE) has said would cost the State over €390 million over five years, looks likely to be rejected for use by the HSE.

In a letter to the CEO of Cystic Fibrosis Ireland, Vertex Pharmaceuticals vice president for Europe, Simon Lem, said that the company refuted allegations by the HSE of failing to meaningfully engage, and that the quoted figure of €392 million is “incorrect, unrealistic and does not reflect discussions to date with the HSE”.

Vertex said that it met with HSE representatives six times in five months and that their submissions included “guarantees of budget certainty for the HSE” .

Lem added that the system used by NCPE for judging the cost effectiveness for drugs like Orkambi had “limitations.”

He concluded by making a direct appeal for Harris to meet with Vertex and take action on the issue as soon as possible.

“Vertex understands,” he said, “that the present situation and manner in which information, or misinformation, is being communicated is causing undue fear and confusion for the patient community.

We are however committed to finding a solution and have today called on Simon Harris TD, the responsible Minister of Health, to intervene directly ahead of a decision by the HSE in the mutual interests of patients, clinicians and industry.

In a statement sent to this evening, Harris said: “As Vertex is well aware, the HSE is the body empowered by law to engage on the reimbursement of drugs.

I want to see further engagement between the HSE and Vertex but it must be meaningful engagement with a view to delivering an outcome for patients. The HSE has indicated its openness to do this. Vertex should do the same.

“That’s what should happen next. It’s clear that many countries are experiencing the same difficulties as Ireland. That is why I am trying to build a coalition with fellow Ministers in the UK, Scotland, Canada and Australia, to move this issue forward for CF patients”.

Calls to intervene

In an open letter the Minister, Cystic Fibrosis Ireland CEO Philip Watt also urged Harris to intervene.

He said: “We call on the Minister for Health, Simon Harris TD, to use his ministerial powers to intervene to ensure that Orkambi is made available in Ireland for the 550 patients who stand to benefit from this life-lengthening drug.

With around 1,200 people with cystic fibrosis here in Ireland, we have the highest rate of the disease per head of population in the world. We also have some of the most severe forms of cystic fibrosis.

“It is rare that a therapy comes along that has been shown to reduce hospitalisations by up to 40% and further it significantly retards the progression of cystic fibrosis for those who stand to benefit from this drug.”

Work together

Harris has written to the health ministers in England, Scotland, Canada and Australia asking them to work together in a bid to reduce the cost of Orkambi.

The health services in these countries have all been considering access to Orkambi for people with CF.

They have been in talks with Vertex to reduce the cost of the €160,000 per patient per year medication.

No decision has been taken to reimburse the treatment in any of these countries to date and the Irish health department has yet to receive the formal decision of the HSE Directorate in relation to Orkambi.

With reporting by Órla Ryan

Read: Cystic fibrosis patients ‘dismayed’ at decision to not fund life-changing drug

Read: HSE drug advisor says life-changing cystic fibrosis drug is “not value for money”

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