As a group deciding on the content of this announcement has been one of our hardest tasks. We are all parents of a child with CF and it is our struggles and the anguish we share with you that brought us together.
Along the path of discovery of generics it has been imperative to keep secrecy for many reasons; not least to ensure the generics were of the same quality as the Vertex product, and to build the media support that would facilitate a successful "Buyer's Club" (a platform allowing patients to club together to secure a discounted price). One of the hardest parts has been not being able to reach out to others with this news until we knew it was solid. We wanted you all to have the hope we found but knew it could be quickly crushed if we hadn’t covered every base.
Life-changing drugs that were over £100k per year are now available for 1/5 of the price. They can be legally bought and imported for personal use for patients able to self fund, and the crown use option, which we were all told would take years, is now a realistic option that could ensure swift access to all. For us, we have had a while to get used to this idea but we are sure that sitting here reading this or watching Newsnight it will be a bit mind blowing for others! We know this information will take time to get used to and we fully expect questions. We will do our upmost to be available to answer them.
We realise these prices still don’t make CFTR modulators widely accessible, and of course we believe the NHS should pay for all our essential drugs; if they do then the price would come down massively. We have various options in progress to ask for this should negotiations with Vertex fail, but for now the drug is attainable privately for some and we didn’t feel it ethical to withhold this information any longer. A Buyer's club has negotiating power based on numbers so please spread the word - the more buyers, the lower the price available for everyone. This is at the very least an interim solution for some patients to get started on the drugs they need.
We hope that this news brings some light into what has been a very dark three years. Maybe for some purchasing generics themselves is now a realistic option, for others just knowing that high quality generics exist and are regulated gives us a basis to fight for other ways to universally fund treatment. Whatever this new development brings to you please all remember we are one, we are all fighting for the same outcome - drugs to extend our/our loved one's lives.
Yours sincerely,
Nina White
Christina Walker
Emily Birchall
Rob Long
Tom Webb
...and other parents who wish to remain anonymous