Join the struggle for a fair market with the NHS for children with cystic fibrosis

A petition urging NHS leaders to sign an agreement with a pharmaceutical company has been signed by 10,400 British families affected by cystic fibrosis.

For now, the Orkambi "miracle drug" is not available via the NHS, although it is prescribed in 11 other EU countries and adds an average of 23 years to the patient's life.

Providing Orkambi to British patients at Vertex's price would cost the NHS about £ 540 million a year.

The NHS has offered 500 million pounds over five years – about a fifth of Vertex's claims, reports the Express.

Some members now want to use the 1977 legislation to cancel Vertex's patent on Orkambi and allow other companies to make it a cheaper version.

Conservative MP Bill Wiggin said: "I urge the government to promulgate a license to use the Crown suspending the patent in order to make this medicine available to those in urgent need of it."

Ian Austin, Labor MP, said, "The public has clearly expressed their support for Orkambi to be accessible to all who could benefit, but people with cystic fibrosis are still waiting.

"They protested, parade and write letters, but to no avail."

& # 39; Compromise & # 39;

On Monday in the House of Commons, Labor MP Kerry McCarthy, whose 14-year-old niece has cystic fibrosis, said, "Both parties could compromise."

It has been shown that Orkambi and another drug, Symkevi, slowed down the decline in lung function – the most common cause of death in people with cystic fibrosis – up to 42% and reduced infections thoracic up to 61%.

Dr. Andrew Hill, of the University of Liverpool, said that a generic version of Orkambi would cost only £ 5,000 per person per year.

Hill said, "The government needs to have more money, it needs to do something different."

Parliament's Health and Social Affairs Committee is launching an inquiry into the issue on 7 March.

Vertex said: "Vertex welcomes the interest of the Cystic Fibrosis Medication Access Committee and we look forward to continuing to support its investigation into this important issue."

How can you help

Parents of children with cystic fibrosis are urging people to sign a petition calling on the NHS to provide lifesaving drugs.

To sign the petition, click here.