Private petition points the way

News -

22,000 signatures and counting as new call for Orkambi highlights the power of the cystic fibrosis community.

After her sister's death from cystic fibrosis in 2015, Hannah Lindley, also living with the condition, started a private petition to provide Orkambi on the NHS. Hannah's sister Iona was only 19 when she died of CF, and Hannah has been fighting tirelessly ever since to convince the government to provide the drug to people who need it.

The National Institute for Health and Care Excellence (NICE) rejected Orkambi back in June on the grounds that it is not cost-effective. While Orkambi does not help everyone with CF, it has been proved to be indispensable to those who can use it. Ed Owen, CEO of the Cystic Fibrosis Trust, has said "it would be ethically unforgiveable" if the drug continues to be rejected on cost grounds, and called for negotiations between the Government, the NHS and the drug manufacturer, Vertex, to take place by the end of July.

Hannah's petition has since gained 22,000 signatures, and needs at least 100,000 for it to be considered for debate in Parliament. The Government responded on 12 July, saying: "Officials in the Department of Health are engaging with Vertex Pharmaceuticals, the manufacturer of Orkambi, to explore potential proposals, informed by those from the Cystic Fibrosis Trust, that could enable NHS patients to access the drug at a cost-effective price. They have encouraged Vertex to engage with NICE and NHS England on their proposals." Read the full statement and sign the petition.

The Government response to Hannah's petition shows that the negotiations the Trust demanded are in June are taking place, and the petition is a great example of the incredible initiative people in the CF community are taking in order to change lives.

Singer gets people to #DonateMate

After one of his lungs collapsed last Christmas, singer and actor Charles Michael Duke has been campaigning for people to join the NHS Organ Donor Register.

Charles, who urgently needs a double lung transplant, started the hashtag #DonateMate, encouraging people to put themselves on the organ donation register and nominate a friend to do the same. Just one hour after appearing on Loose Women to promote his campaign, the organ donation website received over 1,700 new registrations.

Wonder-mum raises £50K at 50

Lorraine Barnes has raised over £300,000 for the Trust in the last 11 years, inspired by her sons who are both living with cystic fibrosis. Most recently, she completed 50 fundraisers in the year leading up to her 50th birthday, raising over £51,000 for the Trust. This mammoth effort culminated in a 50th Birthday Ball, where attendees raised thousands of pounds for cystic fibrosis. The event was attended by CEO of the Trust, Ed Owen, and Lorraine's special guest for the evening was Coronation Street's Tristan Gemmill.

What can you do?

Fundraising events are taking place all the time across the country to raise money for the fight for a life unlimited by cystic fibrosis. You can join an event or get inspired and organise your own! If you would like to find out more about our campaigns or register your interest in joining one of our campaigns, get in touch by email.

Fundraising keeps my mind busy and stops me thinking about what the future might have in store for my sons. So while we are still campaigning for new treatments to help stabilise the condition, I'll keep on fundraising. One day, we will see an end to cystic fibrosis.

Lorraine Barnes

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