After many months of work behind the scenes, we are pleased to announce that the first set of patients travelled to Argentina last week to pick up their medicines and to have further negotiations with Gador and another company there manufacturing a generic. There is a lot of work going on behind the scenes and we wanted to update you with what we can:
It's looking very positive for patients to have medicines shipped to them from Argentina rather than having to travel, via a courier who will collect from the Argentinian pharmacy (which is how other Buyer's Clubs have operated). The exact mechanism, method of payment, costs etc. for this are being worked on and we'll update as soon as we can.
NHS England recently released this statement: “We see no reason why clinicians working in the NHS should not provide ongoing clinical care for cystic fibrosis patients who may have been prescribed a drug privately”.
This is certainly a welcome signal of intent, and we are continuing to work towards achieving a nationally supportive policy that will provide backing for all doctors and NHS Trusts. In the meantime it's worth noting that all patients who have wanted and been in a position to proceed immediately have had the backing of their CF teams, i.e. no-one we know of has been refused, once full and detailed conversations have been had.
The Buyers Club was featured on BBC Newsnight last week, you can watch the program here - https://youtu.be/iXhLAMjQfMk
and we will be featuring on BBC Inside Out on BBC One South on Monday - https://www.facebook.com/watch/?v=556871071720626
As always, if you are looking to proceed immediately please email the Buyer's Club firstname.lastname@example.org where we can support clinician conversions if needed and provide you with further detail. Otherwise watch this space for further updates!