The Orkambi Debate at Westminster Hall

About 60 MPs attend debate at Westminster Hall debate on 19 March 2018

Introduction On 19th March 2018, a debate was held in Westminster Hall to debate Orkambi’s®1 availability on the NHS. Watch the debate here (Parliamentlive.tv, available until approximately 26th March 2018). A transcript is also available (Hansard.parliament.uk. I believe this link will work permanently). The debate was attended by approximately 60 MPs, but attendance at Westminster Hall debates are normally attended by under 15 MPs. The debate was in response to ePetition 209455 (parliament. [Read More]

Orkambi And Me

It’s happened, I’m on ORKAMBI®. Those readers who are: Eating Of a sensitive nature to medical words about body fluids may wish to consider either avoiding this article or returning later. It is with mixed feelings I write this post. Today I started ORKAMBI® [orkambi.com], the drug that is targeted at Cfers (A person with CF) with my genotype ΔF508 (Also known as F508Δ.) It is the most common of Cystic Fibrosis (CF) genotypes in the UK, and possibly worldwide. [Read More]