Campaigners welcome NHS deal on cystic fibrosis drugs but warn system is broken

Thursday, 24 October, 2019

Campaigners welcome increased access to key cystic fibrosis medicines but warn that pharma greed continues to threaten patients’ lives across the world.

After a four-year long fight campaigners and patient activists welcome the news this morning that the cystic fibrosis drugs, Orkambi and Symkevi will be made available under the NHS to patients in England (1). But this protracted price negotiation between the government and Orkambi manufacturer Vertex proves that a system that prioritises private profits over patients needs fundamental change.

Emily Birchall, Just Treatment patient leader said:

“This is absolutely brilliant news for patients and for all the families who have fought so hard to access Orkambi and other medicines for cystic fibrosis over the last four years. We're so pleased for every single patient and family, and all those we've worked with to demand a Plan B on Orkambi that would overcome Vertex stalling on a deal. It’s great news that NHS England and Vertex have finally agreed a price and have made sure that the same offer is available to Northern Ireland and Wales, who are currently without access.

However, four years is an unacceptable wait for people who so desperately need treatment. In this time, hundreds have died and many more have suffered irreversible lung damage and disease progression (2). So while we’re celebrating this news today, this last four years is proof again that the system doesn't work - we need to make sure that access to medicine is never again down to the whim of a private company.”

Tabitha Ha, STOPAIDS Advocacy Manager said:

“This announcement is welcome but long overdue. The agreement between the NHS and Vertex hides the final price of these medicines. If the health secretary, Matt Hancock  genuinely wants to push for affordable medicines, in the UK and across the world, then we need to know the prices of medicines and the true costs of research and development, including the contributions of UK taxpayers to research. Keeping this information in a black box only works to serve the profit-driven interests of Big Pharma.

The UK have promised to improve transparency of medicines prices (3) but we are waiting to find out if, when and how this will happen.”

Radhika Patel, Global Justice Now campaigner said:

“Today we’re celebrating a massive win for patients living with cystic fibrosis but it’s disgraceful that those in need of life-changing medicines are fighting for access in the first place. Unfortunately this is just one example. The power and greed of big pharmaceutical companies repeatedly comes above patient access. We are facing a crisis in high-priced medicines here and around the world.

Bedaquiline has been recommended by the World Health Organisation as a breakthrough medicine to treat multidrug resistant tuberculosis. Yet because of its hefty price tag only 2% of patients who could benefit from it (4) many of whom live in the global south, have been treated with it. The pharmaceutical system needs urgent reform to ensure patients everywhere get the medicines they need.”

Notes

4. Calculation derived from https://www.msf.org.uk/article/msf-urges-johnson-johnson-reduce-price-life-saving-tb-drug