Campaign of the Year Award for acclaimed Daily Express
EXCLUSIVE Chris Riches
YOUR crusading Daily Express was yesterday honoured with the Cudlipp Award for Campaign of the Year, after helping cystic fibrosis patients to access life-saving drugs.
The prestigious Society of Editors award, in partnership with the British Journalism Review, highlights successful media campaigns.
For four agonising years, CF sufferers had pleaded in vain for US company Vertex’s wonder drugs Orkambi and Symkevi to be available on the NHS.
Throughout 2019, we demanded the NHS and Vertex end their stubborn stand-off, sit round a table and negotiate
A DAILY Express crusade to secure a miracle drug for sufferers of a genetic condition affecting the brain has won a major boost.
Phenylketonuria, or PKU, forces sufferers to live on a severelyrestricted diet, as too much protein can cause brain damage.
Life-changing drug Kuvan, created by US firm BioMarin, has been approved for use but is not available on the NHS.
However, after this paper launched its “Supply Kuvan On the NHS” campaign in February, plans have been revealed to consider funding the miracle drug.
NHS England (NHSE) has released a draft proposal that Kuvan be “considered for routine commissioning” with a decision to be made next month. If approved the drug could help 600 sufferers lead a normal life.
Campaigner Kate Learoyd, 46 – mother of PKU-sufferer Alex, 11 – said the news was a massive step for sufferers.
Kate, of Holt,Wiltshire, said: “The support of the Daily Express has meant a huge amount to us.
“It has felt like our voices are heard at last. News that NHSE is considering funding Kuvan for people with PKU is a ray of hope for us.
“This drug is already available across Europe but in Britain PKU families have had to manage without. I worry about how many people with PKU are coping at the moment.
“Kuvan could allow people the chance to have a healthy life.”
It is a major boost during the coronavirus pandemic as PKU sufferers are not classed as “extremely vulnerable” so cannot access supermarket priority slots.
Professor Anita MacDonald, a deal. In a relentless battle, we filled our pages with shocking stories and urgent appeals from more than 100 sufferers of the rare disease.
We also gave CF sufferers like Carlie Pleasant, 30, columns in our newspaper to detail their extraordinary daily lives. The Daily Express also encouraged Carlie, pictured left with Express reporter Chris Riches, and others to write to key figures in the row.
On February 5, 2019, we printed our first CF story, about Ayda Louden, three, of Carlisle, who desperately needed Orkambi to live. We were dietitian at Birmingham Children’s Hospital, said: “Children with PKU cannot eat 80 per cent of normal foods. They can eat fruit and vegetables and a limited inundated with requests from the CF community, with parents pleading for us to tell their child or loved one’s story.
In April, the Change.org petition we backed hit 100,000 signatures and forced a crucial Parliamentary debate on the cystic fibrosis crisis.
Our year-long battle ended with victory on October 24 last year, when Health Secretary Matt Hancock announced that an agreement with Vertex had been signed.
It was no surprise that among the first Mr Hancock informed was Carlie, who wrote her very own Express article about her joy and emotion.
For almost 120 years, your crusading Daily Express has stood for campaigning newspaper journalism.
This week’s Cudlipp Award is a sign of recognition of our effort to continue that honourable legacy.
range of branded frozen and tinned foods. The last few weeks have been very challenging.
“Some families have had difficulty in accessing appropriate food in shops to ensure the correct dietary treatment can be given. Families self-isolating have struggled.”
Last month the Daily Express backed a petition hoping to gain 100,000 signatures to force a Parliamentary debate on the PKU drugs crisis.
●●To sign the PKU/Kuvan crisis petition, visit https://petition. parliament.uk/petitions/300034