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CF7: The next steps towards Trikafta, furlough update, and more

Welcome to CF7. Each Friday we share seven pieces of cystic fibrosis (CF) news, resources and community stories from the week.

1. Tell your parliamentarian why life-saving drugs matter

pillsThe next stage of our campaign is underway for access to the new triple combination therapy for CF (known as Trikafta). We’re working hard to ensure speedy access to the drug, particularly in light of the current risk from COVID-19. Find out how you can help by sharing your story with your parliamentarian.

2. Shielding extended in Scotland

This week the Scottish Government advised that shielding in Scotland should continue until 31 July 2020. A letter is being sent to everyone in Scotland who is shielding. We’re awaiting details on dates for England and Northern Ireland and will update our shielding information as soon as we can.

3. Home monitoring devices to help people with CF stay home and safe

We have been working with NHS England and the UK CF Medical Association to support the roll out of home monitoring devices and apps to help people with CF stay well at home and spot problems early during the coronavirus pandemic. Find out more.

4. Why our fight for a Life Unlimited must be for all people with CF

Our Chief Executive David Ramsden has written about our work to support people with CF from black, Asian and minority ethnic backgrounds and the Trust’s role in being actively anti-racist. Read David’s blog.

5. Live Helpline Q&A answers questions on shielding and more

doodle of speech bubblesThis week we held a live Helpline Q&A on our Facebook page. Our Helpline team were on hand to answer questions posed by our community in the comments section. If you missed it, you can still take a look at the post.

6. Statement from UKCMFA on the triple therapy delay

The UK CF Medical Association released a statement this week in response to the delay of the triple therapy NICE consultation. The statement urges all parties to continue constructive discussions to achieve an early resolution across all the UK nations and allow access to this drug as soon as possible.

7. Update on furlough

Wednesday 10 June was the last day someone could be put on furlough for the first time. The Government has announced an exception to this for new parents who hadn’t been previously furloughed because they were on maternity/paternity leave, which could be really important for parents of babies with CF whose return to work plans have been altered due to the pandemic. Find out more

Donate now to support the Trust’s fight for a life unlimited by cystic fibrosis through ground-breaking research and the highest standards of clinical care.