Hi,

There is exciting news in the CF community…

After four years of waiting, tireless campaigning and people with CF getting more sick. Vertex and the NHS have finally come to a deal regarding the drug Orkambi (and other sister drugs), in Scotland, England, Northern Ireland and Wales.

These medications are thought to be life changing for people with CF, and as someone who has CF myself, this decision has brought hope to me and so many others with CF in the country.

It could mean higher lung function, less symptoms, fewer needed admissions and is thought to push the need for lung transplants further back for those in which the drug treats.

(Sadly some parents have seen decreasing lung function and haven’t found these drugs to help).

This means that (on the whole) for the first time, people with CF can start thinking about living a longer and fuller life. No longer do people in their 20’s necessarily need to start planning their mid-life crisis.

However, this news is bitter-sweet, the CF trust, alongside patients and family members of those with CF have been campaigning tirelessly since 2015 to gain access to Orkambi. The fight has seen many loose hope, as loved ones with CF have died whilst waiting for access. This is something which should never have had to happen and something the CF community will never forget going forward.

Sadly, only 90% of people with CF will effected by this drug. The rest; those who don’t have the correct mutations that these medications treat, or who don’t yet have access, due to where they live, still have no hope.

The push needs to continue to allow further drug development to continue. The 10% need hope.

That is why a few weeks ago I agreed to talk at the Proteostatsis CF conference. We discussed their new CF modulators and developments they are making to look at treating CF as a whole, rather than looking at specific mutations. Currently Vertex hold the power on drug development for CF, but other companies need investments so that different drugs and methods can be implemented. 

There is so much hope going forward and I think the CF community as a whole are excited to see where this goes. However, until 100% of people with CF are cured, the fight cannot be over.

Thank you to everyone who backed the campaign, took the time to read up about it and got involved in any way, it all helped. 

Isabelle