Manea family part of Twitter campaign aiming to recruit celebrities to support a petition for life-enhancing drugs for Cystic Fibrosis sufferers
A Manea toddler and his family have taken to Twitter to recruit celebrity support for a campaign aimed at getting life-enhancing drugs for Cystic Fibrosis sufferers.
Walter Olney and his parents Leanne and Charlie are helping to spearhead a campaign to force the NHS to increase funding for precision medicines for people like Walter, who has the debilitating and life-shortening lung disease.
In a push to gain more signatures for their petition campaigners have launched a targeted Twitter campaign to encourage celebrities to Tweet links to it in the hope their followers will sign-up.
Leanne explained: "The campaign group is #ukneedsorkambi. We have 1.4k members. We are fighting for access to precision medication which treats the underlying cause of CF rather than ones that just manage the symptoms.
"We need NHS England and Vertex Pharmaceuticals to strike a deal for Orkambi and the pipeline of future medications which will treat around 90 per cent of CF patients.
"Tragically 220 have died waiting for Orkambi since it was licensed for use, who may have been eligible (this includes children). These medications improve lung function, increase life expectancy, reduce hospital admissions and need for other medications amongst other benefits.
"We hope to achieve 100k signatures by May in order to try to secure another debate in parliament. Our mainstream media and social media coverage aims to raise awareness and gain public support.
"Unfortunately the NICE (The National Institute for Health and Care Excellence) appraisal process is antiquated and is insisting on assessing these new drugs using the standard criteria which only values drugs at up to £30,000.
" As these new Cystic Fibrosis drugs are extremely advanced, have been 20 years in development and are only suitable for a small number of people, the price per head is bound to be high. The Criteria NICE is using thus ensures a negative outcome.
"The best offer of £500m over five years from the NHS already includes the cost of a drug already paid for. This treats four per cent of the CF population and costs £60m per year which only leaves £40m per year to treat 90 per cent which only works out as a few thousand pounds per person. Therefore it is not surprising that Vertex Pharmaceuticals have rejected their ‘most generous’ offer.
"Through increased pressure and awareness we also hope that Vertex will recognise its moral obligation and lower its cost.
"The UK has a disproportionate amount of CF patients, the second highest in the world. Therefore the cost here is considerable compared to other countries who have been able to pay the asking price."
Celebrities who have responded to the campaigners and have re-Tweeted about the petition included Hollywood stars, musicians, politicians, soap and sports stars.
They include: Mark Hamill; Mark Gattiss, Claire Forlani; Alister Stewart; Cheryl Baker; Lorraine Kelly; Jeremy Corbyn; Shobna Gulati; Nick Knowles; Michael Rosen and Jon East.
East day campaigners announce their target celebrity and urge people to Tweet them. To add your support you can follow Leanne @LeanneOlney
To sign the petition go to: https://petition.parliament.uk/petitions/231602?fbclid=IwAR2JDAwR3jro6NMG1Ix9DIfR7pLzt308H1WR0RgipHjtS8o5GmGCLdqcX4c