Cystic fibrosis patients and their families have been waiting far too long for access to Orkambi – a drug that has huge benefits for up to 40% of those with the condition. But after months of negotiations between Vertex – the pharmaceutical company that makes the drug – and NHS England, which has offered hundreds of millions of pounds to buy the drug, an agreement is still not within sight.
Now, a group of parents have taken matters in to their own hands and have set up a buyers club to try and get access to a far cheaper generic version of the drug. I will be speaking about this, and other ways the Government can support them to make the affordable, generic drug available to all on the NHS in Monday’s debate on access to Orkambi, which was triggered by over 100,00 people signing a parliamentary petition on the issue.
The buyers club was featured on Tuesday’s episode of Newsnight, which you can watch on iPlayer if you’d like to learn more.