We provide information to allow people living with Cystic Fibrosis to access more affordable modulator medicines

 

Vertex Pharmaceuticals have demanded such high prices for their cystic fibrosis medicines that they are unaffordable for health systems in countries all around the world. Thousands of patients have been prevented from accessing treatments that could transform their lives. We think this is unacceptable.

We provide information that allows people living with cystic fibrosis to access more affordable, but quality-assured generic versions of modulator medicines including ivacaftor (Vertex brand name Kalydeco®) and ivacaftor-lumacaftor (Vertex brand name Orkambi®).

Many countries around the world have legal exemptions allowing the purchase and import of medicines for personal use. Through so-called buyer’s clubs, thousands of patients affected by a range of conditions have accessed quality medicines at a fraction of the price demanded by the patent holder company.

The initial prices from the generic manufacturers are already drastically lower than Vertex’s list prices. We expect to significantly lower the prices by pooling our collective purchasing power through the CF Buyer’s Club. Please register your interest on the form below, to help us lower the prices further.

 

We are so proud to announce our partnership with the amazing children’s charity Tree of Hope

 

As a group of parents we understand how difficult raising funds can be, even at generic prices. We know that self-funding a generic is an option unaffordable for the vast majority of people. With this in mind we have been working on a number of options to help support Buyer’s Club members in covering the costs involved - partnering with this experienced charity is one such option.

By fundraising with Tree of Hope families can get the benefits of their registered charity status, which can help to boost funds through gift aid (please see the Buyer's Club Facebook group for more details). Alongside this TOH offer a unique support service and advice, please read our blog post for more info.

 
 

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How Will I Get CF Meds?

As soon as the generic manufacturers are ready, you will be able to order your CF Modulators direct from them, delivered to your door.

Register Your Interest

 

To allow the generic manufacturers to gauge interest and scale of potential sales, please register your interest on the form below. We will be acting as a Buyers Club to pool our collective buying power to negotiate the best prices available. The more people that register their interest, the stronger our buying power will be.