Today I am thinking about people power, each of us so small and yet what a difference we can make!
I messaged the people involved in the campaign for Orkambi in the Republic of Ireland where Orkambi (and future drugs for certain mutations but not all) was recently made available, and this is what they said:
“People power was a huge part of this drug getting approved here and you can’t underestimate its power. We had this social media campaign, a well known campaigner, parents’ groups lobbying politicians on a daily basis etc – it was a massive effort by so many people. We also got a pipeline deal which is great as it means access to drugs from Vertex over the next 10 years.”
They did say that they have another fight on their hands for future drugs for other mutations but that a precedent has been set by getting the current deal.
Please help to set a precedent in the UK too. I know some of you in Ireland and Britain have already planned to go to a protest and have emailed politicians (and well done on your yelfies on Friday!) but if you haven’t yet, and possibly can, please do. There are also ways to get involved on social media. Thank you so, so much. It’s exhausting, as the wee man below can attest to, but so, so worth it.
Monday 26th June, 1PM, wear yellow if you can!
The Welsh Assembly