Here, we have put together some template information that can help you to ensure your voice is represented by your MP in the upcoming Debate on Orkambi and other precision medicines. You can also download this information as a PDF document (290 KB)
How can you help?
Your Member of Parliament (MP) can represent you at the Parliamentary Debate (Monday 19 March, 4.30pm–5.30pm).
Take action: Write to your MP personally, tell them your story and explain why this issue matters to you, your family and the CF community. It is vital for them to represent you. You can find your MP here.
You can also find out how many people in your area signed the Orkambi petition, which will highlight how important this issue is in your area.
What should you tell you MP, and what do they need to do?
Use the template information below when emailing or writing to your MP about how Orkambi or other precision treatments could help you or your friends or family:
- People with cystic fibrosis are being denied access to vital new precision treatments that NICE recommendations show can add years to their lives
- The UK Government must take responsibility for negotiating an agreement as soon as possible
- Drug company Vertex must ensure fair and responsible pricing for a deal to be agreed
- The UK Government must acknowledge the importance of finding a solution that guarantees we are never put in this position again for the future pipeline of treatments for cystic fibrosis.
Spread the word!
When you’ve written to your MP, it’s time to use your voice to rally round – ask your friends and family to write to their MPs too – share this page on Facebook and Twitter – or send them the link cysticfibrosis.org.uk/YourVoice.
What does your MP need to ask of the UK Government?
Your MP must ask the UK Government whether they will take responsibility for making progress in negotiations for access to Orkambi and future cystic fibrosis medicines.
At the debate
The Parliamentary debate will be chaired by Paul Scully, MP for Sutton and Cheam, held at 4.30pm on Monday 19 March in Westminster Hall and broadcast live on www.parliamentlive.tv.
The debate will allow MPs to ask a UK Government minister for an official response to our community’s demand that Orkambi is made available on the NHS for eligible people with cystic fibrosis. The debate was triggered by a community-led petition which raised over 107,000 signatures in just 11 days.
Remember: Your MP must ask the UK Government whether they will take responsibility for making progress in negotiations for access to Orkambi and future cystic fibrosis medicines.
Frequently Asked Questions
Here are some questions that your MP might want to know and some extra information that could help you to form your correspondence. You can find out more on our access to medicines FAQ page.
What is cystic fibrosis?
Cystic fibrosis (CF) is a life-shortening genetic condition that affects over 10,400 people in the UK. Last year, half of all people who died with cystic fibrosis were under the age of 31.
What is Orkambi?
Orkambi is the only precision medicine licensed for people with cystic fibrosis who have a specific set of CF-causing genetic mutations, known as your ‘genotype’. Orkambi works for people who have two copies of the F508del mutation – around 50% of people with CF in the UK.
Traditional treatments for cystic fibrosis aim to lessen symptoms and complications. However, progressive damage still occurs, meaning symptoms and complications will increase with age.
Orkambi is a revolutionary medicine that tackles the root cause of cystic fibrosis. It is proven to slow decline in lung function by 42% and cut the number of infections requiring hospitalisation by 61%. This gives people more control and greater quality of life.
It was licensed for use in Europe two and a half years ago and is available in Austria, Denmark, France, Germany, Luxembourg, the Netherlands, Italy, the Republic of Ireland, Greece, and the United States.
In 2016, both NICE and the SMC announced they were unable to recommend the drug due to its cost, despite acknowledging the drug is “important and effective”.
Since then, the Cystic Fibrosis Trust and the CF community have relentlessly called for negotiations and a fair, sustainable pricing deal for Orkambi, as people with cystic fibrosis wait and their health and quality of life declines.
By 2020, development of new drugs could mean 90% of people with CF will be eligible for treatment that targets the root cause of the condition. The UK Government must act now to agree a sustainable solution for access to cystic fibrosis medicines now and in the future.
What is Vertex’s proposal?
Drug manufacturer Vertex submitted a fresh proposal to NHS England in February 2018 for access to its current and future cystic fibrosis treatments including Orkambi.
The manufacturer claims this approach will help provide equitable access to their medicines for people with CF in a way that could enable the NHS to budget for the longer-term.