Cystic fibrosis children beg PM for life-changing drug

Children with cystic fibrosis across the UK send letters to Theresa May pleading for medicine.

Luis Walker
Seven-year-old Luis Walker wrote the first letter

Hundreds of children suffering from cystic fibrosis have written to Prime Minister Theresa May pleading for the life-changing drug, Orkambi.

More than a thousand letters are being delivered to Downing Street - about three quarters of them from children.

The National Institute for Health and Care Excellence has not recommended the drug on grounds of cost effectiveness.

Ministers have urged pharmaceutical firm Vertex to drop the price. Vertex said it wants to reach an agreement.

The Cystic Fibrosis Trust said the letter campaign was to ask Mrs May and her government to make sure discussions between Vertex and the NHS take place and are supported, so they can agree a fair price.

Seven-year-old Luis Walker, from Horam, near Heathfield, Sussex, wrote the first letter to Mrs May asking her to give him Orkambi.

Luis told Mrs May he wanted to feel better and spend less time in hospital

His mother, Christina Walker, said: "One day he was sat at the table, he was struggling to breathe, coughing up phlegm and in desperation he said 'mummy, why can't won't they [sic] give me the medicine?'

"I said 'why don't you write a letter?'

"So he did, he wrote a letter. He felt good that he'd done it."

After Luis sent his letter, his friends, family, teachers and fellow patients decided to do the same.

More than a thousand letters are being delivered to Downing Street

Patients with cystic fibrosis cannot meet in person because of the risk of cross-infection, so word spread through the UK's online cystic fibrosis community via a private Facebook group.

Mrs Walker said: "It snowballed into a massive, emotional outpouring of desperation."

Orkambi has been shown in clinical trials to improve lung function and respiratory symptoms in people with cystic fibrosis - a genetic, life-shortening condition that causes fatal lung damage.

David Ramsden, chief executive of the Cystic Fibrosis Trust, said: "Significant advances in medical science mean new precision medicines are available or in development that have the potential to transform the lives of people with cystic fibrosis.

"We urge the prime minister to ensure that they are available for the thousands of children and adults who have been waiting for far too long."

Christina Walker said the campaign turned into an "outpouring of desperation"



Date: 16 May 2018 | Source: BBC

More UK News

MPs quit Commons group because Speaker Bercow chairs it

Will Quince, Mims Davies and Anne Milton resign from the Reference Group on Representation and Inclu..

Dutch King Willem-Alexander warns of Brexit uncertainty

During the Dutch royals' state visit to the UK, King Willem-Alexander says he's saddened by Brexit

Adder extinction fear over 'image problem' in the UK

A big attitude change towards adders is needed if the snake is to survive in the UK, experts warn

Dutchman's 'pure shock' after winning Cardigan bookshop

Paul Morris and his wife Leila decided to give the shop away following a tragedy in the family

Brexit: Back to the backstop

With five months to go until the UK is due to leave, the backstop is the core issue which needs to b..

Bar crawl students 'apple bobbed in urine'

More details emerge of the alcohol-fuelled ceremony at Newcastle University after which Ed Farmer di..
View More

More Telford News

 Telford man sexually abused boy and girl 40 years ago

A Telford man sexually abused a boy and a girl in the 1970s and 1980s, a h..

 'Very concerned' CQC takes action against Shropshire hospital trust

The CQC "remains very concerned about the emergency department and materni..

 Driver arrested as 'stolen caravan' causes Telford congestion

A driver suspected of stealing a caravan has been arrested at a busy Telfo..

 Zombie invasion Telford Shopping Centre

Zombies took over Telford shopping centre on Saturday evening for a unique..

 Newport’s Nova United players looking smart thanks to National Windscreens

A Telford firm has given its backing to Nova United Junior Football Club by..

 Award win launchpad to going national for Shropshire’s UK Fresh Meats

A Shropshire firm specialising in meat delivery has its sights set on a nat..
View More

Telford Businesses

Calendar Countdown

[[countdown here]]
[[countdown here]]

Upcoming Events in Telford

24 Oct 2018

Wed 24 Oct - 7:30pm
Thu 25 Oct - 7:30pm
Fri 26 Oct - 7:30pm
Sat 27 Oct - 2:30pm
Sat 27 Oct - 7:30pm


Tickets £15


Group offer: £12 tickets for groups of 20+ per performance

View Details

27 Oct 2018

6- 9pm


Adult & 60+ - £13

Child (aged 3-15) - £9.50
Child (aged 0-2) - FREE
Family (2+2) - £40

Please note Passport tickets are not valid for this event and dogs will not be allowed.

Tickets must be purchased in advance either online

Dogs will not be allowed and remember to bring a torch.

View Details

30 Oct 2018

2.30pm


Tickets £11

Suitable for 5+

Show running time (approx) : 40 minutes - 15 minute interval - 30 minutes

View Details

31 Oct 2018

7:30pm


Tickets £24

Concession £22

View Details

31 Oct 2018

6:30 - 8:30pm


Children: £5.99

Adults: £1.99

Under 2's: £2.25

Under 1's: Free

View Details
View More