COMMENT: It’s time to break the impasse on Orkambi

0
Have your say

Gemma Weir has a very personal reason for wanting the life-changing drug Orkambi to be made available on the NHS.

Every day she sees the effect of cystic fibrosis on her young daughter, Ivy, whose lungs and digestive system get clogged up with mucus.

Ivy has to go through a rigorous daily treatment regime of taking tablets, doing physiotherapy, using a nebuliser and occasionally having intravenous antibiotics.

The problem is that the National Institute for Health and Care Excellence has not recommended Orkambi to be made available on the NHS because it costs £104,000 per patient per year.

No matter that it is state-funded in other countries such as Ireland, Holland, Germany, America and Greece. Here, it is not available - even though it could give people with cystic fibrosis a near-normal life expectancy.

For people like Gemma, that is not acceptable.

So next week she will be marching to Parliament after getting the 100,000 signatures needed to get the subject debated.

As well as a march, there's a vigil, a protest outside NHS England and the handing in of a petition to Vertex – the company that makes the drug and cannot come to an agreement with the NHS over pricing.

After nearly three years of campaigning, Gemma wants action. And who can blame her?

There has been a government debate on the issue, thousands of letters have been delivered to 10 Downing Street and prime minister Theresa May has said she is 'keen to see a speedy resolution' to dialogue between the NHS and Vertex.

So we urge Vertex to listen to Gemma’s impassioned argument and look at making Orkambi more affordable.

It’s time to break this agonising impasse for the sake of Ivy and others like her.