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  1. ITV Report

Fight for cystic fibrosis drug continues after medicines destroyed

  • Watch Juliette Fletcher's report from the west of the region below

Manufacturers of a medicine used to treat people suffering from cystic fibrosis have admitted to destroying 8,000 packs of the drug because they were out of date.

Campaigners in the South are fighting for the drug Orkambi to be made available on the NHS.

It comes during the long running dispute between the NHS and Vertex, the manufacturers, over the licensing and cost of Orkambi.

In a letter, medicine company Vertex confirmed 7,800 packs of Orkambi had been destroyed in 2018 because they were out of date

Among those waiting to access the drug is a teenager from Hartley Wintney, in Hampshire, who could miss her prom because of hospital treatment.

15-year-old Elizabeth Sheahan, who is diagnosed with the genetic condition, says she undergoes many sessions of physiotherapy to relieve the symptoms.

Credit: ITV Meridian

She says she's missed out on school work because she's had to take time off to go to hospital, physiotherapy, and because of sickness.

She currently uses inhalers, antibiotics, insulin and nebuliser medication to deal with her condition.

However she says taking Orkambi could mean taking "less trips to the hospital", claiming it's "unfair" that she and many like her do not currently have access to it.

Christina Walker from Horam in Sussex, whose son Luis lives with cystic fibrosis, says her son is being denied "valuable treatment".

>10,000
people currently live with cystic fibrosis in the UK
  • What is Orkambi?
  • It's a licensed drug available to relieve many of the symptoms and improve the standard of living for many who live with Cystic Fibrosis.
  • Orkambi is a precision medicine that treats the F508del mutation, which around 50% of people with Cystic Fibrosis in the UK have.
  • The drug is currently not available on the NHS because the cost is determined to be too high. However, the health secretary Matt Hancock has agreed to resume talks with the drug company Vertex to see if the medicine could be provided on the NHS in the future.

It's a desperate waste and utterly heartbreaking for thousands of families across the country for whom those medicines could have made a life-changing impact. What it highlights is the incredible time wasted in not being able to find the right deal to get these supplied to those individuals."

– Nick Medhurst, Head of Policy and Public Affairs, Cystic Fibrosis Trust
  • Watch Malcolm Shaw's report from the east of the region below

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