Plight of Norwich 11-year-old with cystic fibrosis cited by MP in drug pricing debate

PUBLISHED: 17:40 11 June 2019 | UPDATED: 22:14 11 June 2019

Norwich South MP Clive Lewis. Photo: Norwich City Council / Bill Smith

Norwich South MP Clive Lewis. Photo: Norwich City Council / Bill Smith

Norwich City Council © 2019

Norwich South MP Clive Lewis has called for pharmaceutical companies to “put patients, not profits” as a priority in a row over access to drugs for cystic fibrosis.

Cystic fibrosis (CF) is caused by a defective gene, and one in 25 people carry the faulty DNA.

And the NHS is currently locked in a fierce pricing battle with drug manufacturer Vertex over the supply of medication which could help thousands of sufferers.

In a debate in Westminster Hall on Monday Mr Lewis spoke about constituent Rachael Young and her 11-year-old son Ethan.

Mr Lewis said the pair were "forced to live with the realities of cystic fibrosis every day, and the adverse impact that the actions of the company Vertex are having on their lives".

MORE: Drug could give Esme an extra 23 years of life - if NHS and drug firm end price battle

He said: "Ethan is 11 years old. He has a big smile and loves pizza, trampolining and spending time with his friends, but sadly that is where the similarity to other 11-year-olds ends, since every day his life and that of his mum Rachael are dominated by the strain of dealing with cystic fibrosis."

Mr Lewis said his lung function had declined to just 54pc, forcing Ethan to spend two full days in hospital in the past four weeks, plus enduring 14 days of intravenous antibiotics, which are given two times a day and take 45 minutes each time.

He also has to see a psychologist to help him to overcome needle phobia brought about by years of blood tests.

MORE: 'How can you put a price on our daughter's life?' - Eight-month-old's future in the balance in NHS drug pricing row

Mr Lewis said: "All that is on top of his regular daily cocktail of medication and a physio session of a minimum of 22 minutes every day.

"Yet none of those treatments are designed to cure Ethan. They are simply designed to treat his symptoms — symptoms that are expected to get worse the older he gets.

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"They attempt to slow down the irreversible lung damage that will slowly cause him to suffocate. He knows that."

Mr Lewis said Vertex drugs could "change the lives of cystic fibrosis sufferers and their families, since they fix the underlying genetic mutations that cause the condition".

But he said their priority had instead been investor returns.

He said: "The unforgivable actions of Vertex Pharmaceuticals, which admittedly does important work in research and development relating to the treatment of cystic fibrosis, mean that it continues to put patients' lives at risk as it seeks to extract the highest possible price from our NHS."

MORE: Norfolk families affected by cystic fibrosis push for life-changing treatment to be made available amid price row

Mr Lewis said it was key to look to the European Union to put pressure on drugs companies to make pricing fair. He said: "That is one of the reasons I want to stay in it."

But he also said it was important to look at who determines the price of drugs, and suggested the government considers compulsory licensing to allow another company to make cheap, generic copies of the medication.

Why have the drugs not been approved?

Vertex has been locked in a battle with the NHS since 2016 over the medication Orkambi, which has been hailed as a breakthrough for those with cystic fibrosis (CF) but will only work for some patients.

During that time another drug, Symkevi, has been approved and would help others, but that is also not available on the NHS.

Orkambi has a list price of £104,000 per patient, per year but the NHS has offered Vertex £500m over five years for the drug, but also access to other cystic fibrosis drugs made by Vertex.

However this was rejected by the firm.

A spokesman said: "We have been open to discussing multiple options and flexibilities which would allow cystic fibrosis patients to access currently approved medicines."

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