Scottish cystic fibrosis sufferers to get £182,000 drug

Health Secretary Alex Neil. Picture: Ian Georgeson
Health Secretary Alex Neil. Picture: Ian Georgeson
Share this article
Have your say

Patients with a rare form of cystic fibrosis will be given access to a new drug which has not been approved for use on the NHS in Scotland, the health secretary announced yesterday.

Ivacaftor – or Kalydeco as it is also known – will be funded through the new £21 million fund to help improve access to drugs for people with rare medical conditions, Alex Neil said.

The fund was announced earlier this week. At the same time, the Scottish Medicines Consortium (SMC) decided not to recommend Ivacaftor for use in the NHS.

The drug, which costs £182,000 per patient per year, was made available on the health service in England at the start of the year.

Patients in Scotland will still have to apply for Ivacaftor using the Individual Patient Treatment Request (IPTR) system, which has been criticised in the past by medical professionals as an “inequitable process”.

But Mr Neil said the Scottish Government would take “swift action” to ensure there was no barrier for clinicians who want to prescribe it.

Following a meeting with the Ivacaftor Patient Interest Group yesterday, they and Mr Neil released a joint statement which said: “Access to these rare medicines is currently available through the IPTR process.

“However, we recognise the fact that as Ivacaftor benefits 100 per cent of the patients with the ‘Celtic gene’ or G551D genetic mutation, it presents a challenge to the IPTR process as it stands.

“That is why the Scottish Government will take swift action to address how best to ensure that where specialist clinicians are supportive of prescribing Ivacaftor, the IPTR process does not present a barrier to accessing it. Guidance on the prescribing of Ivacaftor will be issued to all NHS boards.

“The Cabinet secretary was clear patients with the G551D gene mutation should not end up competing against each other for access to medicines.”

Ed Owen, chief executive of the Cystic Fibrosis Trust, said: “We had a very positive meeting with Mr Neil and I am delighted that with his commitment all patients with the G551D mutation will get access to Kalydeco.

“Mr Neil recognised the unique nature of the Kalydeco issue and said the process would ensure that all patients benefit from the beginning of March.”

Holyrood’s health committee heard last year that the IPTR system was an “inequitable process” that favours young, middle-class and articulate applicants over more suitable, vulnerable people who cannot speak up for themselves. In November, Mr Neil said a review would be carried out to look at current systems for making new medicines available across the NHS in Scotland.

As well as the new fund, a separate review is examining if the IPTR arrangements can be improved.