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Cystic Fibrosis Buyers Club

CF Buyers Club

Some of our readers may have seen in the press recently about the Cystic Fibrosis (CF) drug Orkambi, which is not available on the NHS due to its excessive price. Thousands of people are being prevented from life prolonging treatment as the pharmaceutical company Vertex have refused to lower their price or negotiate responsibly with the NHS for almost 4 years. It’s an area we became really interested in after we received contact from Nina White, a Mum of a child with Cystic Fibrosis who wanted to tell us about the ‘Buyer’s Club’ that a cohort of parents have set up. Read on to find out more!


The CF Buyer’s Club has been started by a group of volunteers in the UK who all have children who need access to Orkambi and other medicines sold by Vertex. The group have also been working with Just Treatment to campaign for the UK government to issue a Crown use licence that would allow it to buy a generic version of Orkambi for the NHS.


Vertex have demanded such high prices for their Cystic Fibrosis medicines that they are unaffordable for health systems in countries all around the world. The CF Buyer’s Club provides information that allows people living with Cystic Fibrosis to access more affordable, but quality-assured generic versions these medicines.


Many countries around the world have legal exemptions allowing the purchase and import of medicines for personal use. The UK is one such country, and patients are now able to purchase quality generic versions of Vertex’s medicines for £23,000 per year, rather than the £104,000 per year demanded by Vertex.


This provides an option for families to self-fund treatment which has up until now been impossible, although even at the much lower price it is still a huge financial burden for most. This is where Tree of Hope can help, by helping parents to fundraise with guidance and support and with the benefit of doing so under a registered charity.


On speaking to Nina, she told us “We are pleased to have formed a working partnership with Tree of Hope. It is inexcusable that families already battling a life-limiting condition have to fundraise for a lifesaving drug but having the option of support from Tree of Hope, which gives the tax benefit of gift aid, takes some of the pressure off vulnerable families and gives them professional guidance. Families can be reassured that if any of the drugs become available in the UK, TOH will manage raised funds to cover the child’s medical needs until they reach 25”.


Since the partnership started with the CF Buyer’s Club, we have already been able to start supporting families to get the funding for this drug. Luis Walker is nine years old and has Cystic Fibrosis, which he was diagnosed with at 3 weeks old.


His mum Christina told us “He was very poorly throughout his first year and for the last two years has been battling a lung infection that it multi-resistant to antibiotics. Luis has a 3 hour regime of medicines and physio every day but we try to ensure he leads a full and relatively ‘normal’ life when not in Hospital”.

Luis attends school regularly with his friends which he enjoys very much. Christina said, “He is very resilient like most people with CF because he has never known any different and approaches set-backs with his health very bravely” she went onto say how much Luis loves playing football, tennis and cricket with his friends, “it’s great because physical exercise means his lungs are kept in the best condition they possibly could be and he is generally very fit which helps him to deal with times of illness.”


Christina is one of the founding members of the CF Buyer’s Club having campaigned for access to the branded Vertex drugs to no avail for years with other parents, one of whom stumbled across an Argentinian manufacturer of a generic version of the drug that Luis needs. Christina told us “It was an amazing discovery that changed our lives – we went from the desperation of fighting a seemingly unwinnable fight into a practical battle to get hold of the generics. We’ve been given hope that Luis can live a longer life and I will not stop until he has the treatment.”


Christina is now fundraising for Luis and busily campaigning for other families to join us so that they too can have hope. Georgie asked Christina’s views, to which she told us, “Privately funding these drugs is not the answer long term because essential medicines should be available on the NHS, so the wider and longer-term issue is to keep fighting for universal free access.”


Christina went onto say “I’m really grateful to Tree of Hope in joining us in this situation and offering support to families. I want as many people with CF as possible to get access to the drugs they need and urgently. The political arguments and campaigning will no doubt continue but we are not waiting any longer – we’ve taken matters into our own hands and will get the medicines to give longer lives to those we love.”


The passion and determination behind the CF Buyer’s Club has really struck us which is why we are so behind it. As Christina said, “It feels very empowering to finally be able to do something about it, although the financial commitment is a big strain. We shouldn’t be in this position, but we are and to me Luis comes first and last and I will do whatever I can to help him.”


The Buyer’s Club are now inviting others to join Tree of Hope to access self-funding support.


Interested parties can also follow the Buyer’s Club on Facebook to be kept informed of all the latest news and developments and to help campaign for universal access to generics on the NHS. As Christina said; “We hope this is just a short-term fix, and we really hope our work enables other families to access to these drugs.”


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