How it started…
In 2019 a volunteer group of UK parents launched the CF Buyers’ Club to open a lawful, practical route for people with cystic fibrosis to access quality-assured generic CFTR modulators at a fraction of the branded price. While not affordable for everyone, the buyers’ club model used collective demand to lower costs and build pressure for universal access.
Early media coverage (BBC Newsnight, BBC Inside Out, The Guardian, New Scientist, Mail Online) helped connect families and clinicians to clear, practical information. By September 2019, the first members travelled to Argentina to obtain medicines, while work progressed to enable secure pharmacy-to-patient shipping so travel wouldn’t be required. NHS England confirmed clinicians could continue caring for patients prescribed drugs privately, which helped teams support ongoing monitoring.
Generics identified in Argentina were registered with ANMAT (a PIC/S member), manufactured at GMP-inspected sites, and supported by a 127-page bioequivalence study showing Lucaftor® matched Orkambi® within accepted ranges. A leading London university/NHS lab confirmed the API content matched the originator, and an FDA-recognised independent consultant reviewed and endorsed the testing methodology.
Since then, the Buyers’ Club has been relaunched (2.0) to help patients access a more affordable, quality-assured generic.
To find out more about the history of the Buyer’s Club, read the original 2019 blog posts → Old blog archive