Orkambi on the NHS

Cystic Fibrosis is a terrible genetic disorder that affects the lungs and significantly reduces the life expectancy of those who suffer from it. There are currently more than 10,400 people in the UK who have the condition. 

There have been major breakthroughs in the treatment of the disease. Perhaps the biggest breakthrough being the medicine, Orkambi, which has been produced and patented by the pharmaceutical company, Vertex.  

Unfortunately Orkambi is not available on the NHS for people in the UK who suffer from Cystic Fibrosis. This lack of availability is affecting people across the country and I know this includes some people here in Alyn and Deeside.  

The medicine would benefit around half of the people with Cystic Fibrosis in the UK and it is not right that Vertex are risking the well-being of sufferers by pricing this drug so highly. 

The power that these pharmaceutical companies have over countries and their health providers is not fair and should be challenged. 

Although it’s clear that these companies should not be putting profits ahead of the livelihoods of the young people suffering with this degenerative disease, the Government also should be making the availability of Orkambi a priority. 

It has now been a year to the day that Theresa May announced that she wanted a speedy resolution to the Orkambi issue. Unfortunately we don’t appear to be any closer to that resolution.    

I have taken this issue up on behalf of a number of constituents who have approached me. Constituents who are seeing loved ones suffer immensely. 

I have had confirmation from the Health Minister that the Government want the NHS and Vertex to come to an agreement at the earliest opportunity. 

We do however appear to be at a complete standstill with this and it is clear that more flexibility is required from all those involved 

The Government must do all that it can to get past this impasse and ensure that NICE, the NHS and Vertex move talks forward and agree a deal that will enable access to this vital new medicine as soon as possible.