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The life-changing cystic fibrosis drug meeting is welcome



  Marion Fellows and Sahoarce Copyright
Marion Fellows

Caption of Images

SNP MP Marion associates with her granddaughter Sahoarce, who was diagnosed when she was three weeks old

Families welcomed an agreement that would make two "life-changing" cystic fibrosis medicines for patients in Scotland.

A five-year agreement has been reached between the Scottish Government and the pharmaceutical company Vertex on the use of Orkambi and Symkevi.

Medications improve lung health but were discarded for use by the NHS last month as they were not considered cost effective.

The drug usually costs £ 1

00,000 per patient per year.

The Scottish Government stated that it had secured a "confidential rebate" from the manufacturer.

Patients in other parts of the UK do not yet have access to treatment, with campaigns calling for an end to the "postal code lottery".

"Never let go"

SNP MP for Maurowell and Wishaw Marion Marion, whose three-year-old granddaughter Sahoarce has cystic fibrosis, said it was a "big moment" for patients and their families who were "ruthless" and inspiring in your campaign.

Ms Fellows said: "I am so pleased that so many families in Scotland will benefit from these new drugs. Hundreds will be able to lead a longer and fuller life thanks to this decision.

The Scottish Government never allows

"But cystic fibrosis knows no bounds. The UK Government must follow the guidance of the Scottish Government and make it available to sufferers in England. "

Copyright [19659003] Getty Images

Image caption

Medicines can reduce hospital admissions by stabilizing of lung health

Cystic fibrosis is a genetic shortening condition that causes fatal lung damage and affects around 10,400 people in the UK – about 900 of them in Scotland.

Only about half of those with the condition live to the age of 40.

NHS Scotland estimates that one in 24 Scots has a CFTR mutation which, if carried by both parents, would lead to the birth of a child with cystic fibrosis.

Glasgow mom Gail Gilmore, whose son has cystic fibrosis, tweeted that he did not have "adequate words" to thank those who helped sign the Scottish patients deal.

Others said they hoped that this would lead to progress in the negotiations for England, Wales and Northern Ireland.

Earlier this year, campaigns urged the UK government to use its powers to end the impasse to make Orkambi available in the NHS in England.

Vertex has rejected a £ 500m bid for the drug for five years – which has been described as

The affected have asked other drug companies to be asked to make a cheaper version.

The United Kingdom Government Department of Health stated that its approach still required Vertex to accept NHS England's "generous proposal".

Highlights

The Scottish Consortium of Medicines (SMC) rejected the routine use of the drug in August, saying there was uncertainty about the long-term health benefits of Orkambi and Symkevi in ​​terms of their costs.

David Ramsden, CEO of the Cystic Fibrosis Trust, said the deal was a "momentous moment" for hundreds of people with CF and their families in Scotland.

"This breakthrough is a victory for their perseverance and lasting hope. This means that 350 eligible people living in Scotland will have access to medicines that stabilize lung health and reduce the need for hospital admission. "

He stated that the trust would continue the campaign for access to medicines in England, Wales and Northern Ireland, adding:" Scotland's success must now be replicated in the United Kingdom without further delay. "


represent Orkambi and Symkevi ?

Since 2015, Orkambi has been licensed to treat cystic fibrosis in patients from 2 years of age to adults who have a specific genetic mutation known as F508del.

available in the NHS, except for some people for compassionate reasons.

Symk evi is used to treat the same mutation in patients 12 years of age and older.

The mutation causes the production of abnormal protein that disrupts the way water and chloride are transported to the body.

Orkambi has been shown in clinical studies for improvement in lung function n and respiratory symptoms in people with cystic fibrosis

This is the first of a number of drugs that have been developed, with new ones expected to be even more effective.


Scotland's Health Minister Jane Freeman said "fantastic news" would allow cystic fibrosis patients to "live a fuller life for longer."

"The agreement was reached after extensive discussions between the Scottish Government and Vertex Pharmaceuticals means that the drugs will already be available to patients in the NHS in Scotland, subject to a confidential discount, "she added.

Vertex

Louis Feno, senior vice president of Vertex, said:" We would like to thank the Scottish authorities for their marriage o partnership and joint cooperation. the flexible way we worked together to find this access solution.

"This means that approximately 400 cystic fibrosis patients in Scotland now have access to Orkambi and Symkevi."

Some Scottish patients have previously had access to Orkambi and Simkevi through a PACS Tier 2 client-approved system. ), which allows doctors to apply for access on behalf of individual patients.

An S MC spokesman stated that the pharmaceutical industry was responsible for placing their medicines on the market at a fair price.

"SMC members make these difficult decisions based on extensive clinical experience and taking into account all available evidence, including that provided by patient groups, we look forward to receiving new evidence from Vertex about the impact of these drugs following the agreement reached with the Scottish Government. "


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