Why I want to see Plan B on Orkambi

Patient leader Clare had to fight to access hepatitis C treatment on the NHS after it was rationed due to the high price. Here she explains why she’s supporting the campaign to overturn drug company Vertex’s monopoly on the cystic fibrosis drug Orkambi. Vertex are demanding such a high price that after nearly 4 years, the drug is still unavailable on the NHS.

Clare smiling small.jpg

Clare Groves

Just Treatment patient leader

I support the Orkambi Campaign because I believe it is important that we put up a united front against the greedy pharmaceutical industry.

I know how it feels to be denied a life changing medication - you can read my story here. But this isn’t about me, this is about how a whole industry is holding sick people including children to ransom by denying them the treatments that would give them a better quality of life.

Drug company Vertex have refused an offer for their cystic fibrosis drugs that has been described as the “largest ever financial offer the NHS has made in its entire history”. They’re demanding the impossible, and it’s patients who suffer.

this is about how a whole industry is holding sick people including children to ransom

It’s a disgrace that cystic fibrosis patients are being denied access to Orkambi because of Vertex’s outrageous price. If we don’t unite in solidarity this situation will continue to be repeated over and over again. We must not be fooled by big pharma - they are only in it for profit, not because they want to cure people. They continue to peddle the lie that research and development costs are to blame.

The government should put a stop to this now! They have the power to do so by overturning Vertex’s monopoly with a Crown Use licence. Can you help make sure the government takes action by emailing your MP? Together we can make sure that Vertex’s profits no longer get in the way of patients’ treatment.

Elizabeth Baines