New Orkambi campaign launches like a rocket!
Anna Bennett first heard about Just Treatment’s Plan B on Orkambi campaign when she picked up the papers. Here’s her reflection on the media blitz that accompanied our campaign launch.
Cystic fibrosis has been well and truly in the headlines since the launch of the Plan B on Orkambi campaign at the start of the month. Whilst paying for the double cream I use to add calories to my daughter’s milk, I was met by the front page of the Daily Express, informing me that talks between Matt Hancock and chief executives at Vertex are due to resume. Since my daughter was diagnosed with cystic fibrosis three and half years ago, I have not seen this level of media activity surrounding cystic fibrosis and the failure to secure a deal for Orkambi.
The coverage has been across the board, with the Times, the i, the Daily Mail and the BBC all running stories, and with significant and continued coverage by the Guardian and the Daily Express. The Guardian who put Plan B on its front page on the 4th February followed up with a story focused on Vertex’s recently announced 40% rise in revenues and mentioned Plan B as a possible solution to the impasse. The Daily Express highlighted personal stories of patients whose lives have been transformed by Orkambi, and those who - like my daughter - are eligible for the drug but continue to be denied access.
BBC Two covered the issue on the Victoria Derbyshire show, with Shadow Health Secretary Jonathan Ashworth addressing Vertex directly after they cancelled a meeting with him via text message just as he went live on air. The Labour frontbencher urged Vertex to resume discussions with the government, and flagged the possibility of Plan B - a Crown use licence - if they fail to reach a deal.
The story was also covered by Sky News, the ITV Lunchtime News and the Channel 5 News. And there has also been important radio coverage from Radio 4 and Radio 5 Live, LBC, Talk Radio with Eamon Holmes and BBC Radio Surrey, London and Kent.
Twitter support from MPs has been flooding in. Jonathan Ashworth tweeted a video of eight year old Luis pleading for access to the drug that “can make me feel better”, which was retweeted 1304 times, including by Jeremy Corbyn and 9 other MPs.
It’s time for the voice of the cystic fibrosis community - those who live with the disease and those who love those who do - to be broadcast on a national platform. It has been over three and a half years since the US FDA approved Orkambi and, as a newly initiated CF mum, I scrolled through the joyful posts on social media expecting access would quickly follow. Sadly for UK patients it hasn’t. It’s time for the government to heed the growing demands to put Plan B into action.
Anna Bennett lives in Birmingham with her husband and 3 year old daughter who lives with cystic fibrosis. She works as an ESOL teacher and enjoys reading, playing the violin and watching for the Spring.