The most important action you can take.
CONTACT YOUR MP
We need the political pressure from MPs to secure funding for these expensive drugs.
It’s your MPs job to be your voice in Parliament, there is no need to be hesitant in contacting them because you think they are too busy. They are very used to hearing from lots of people in their constituency and they deal with a vast range of issues that affect local residents.
Health is a devolved issue, which means that Scotland, Wales and Northern Ireland have control over their healthcare and they are not bound by the decisions of the UK Parliament. The following advice also applies to writing to your member of the Scottish Parliament, National Assembly for Wales or Northern Ireland Assembly. Scotland, Wales and Northern Ireland residents are represented by a MP in the UK Parliament and a MSP, AM or MLA in your regional parliament. Although Health is devolved, it is still worth writing to both your MP and your MSP/AM/MLA.
How to contact your MP
Your first step is to write an email (or post a letter if you live in New Forest East, as Dr Julian Lewis MP refuses to use email!).
You can find your MPs contact details on the Parliament website enter your postcode and it will tell you who your MP is and their email, phone and address of their constituency office.
For Scotland, your MSP can be found here - http://www.parliament.scot/msps.aspx
For Wales, your AM can be found here - http://www.assembly.wales/en/memhome/Pages/memhome.aspx
For Northern Ireland, your MLA can be found here - http://aims.niassembly.gov.uk/mlas/search.aspx
What to write and ask them to do
The main reason to contact your MP is to tell them your story and ask them to get involved in finding a solution to accessing these vital drugs.
They probably do not have any, or little, knowledge of Cystic Fibrosis. So you should outline CF and how it affects your family. Tell them about your family, personal stories are easy to relate to.
The main points you want to get across are :
CF is for life, and there is no cure. Current treatment is focused on preventing infections and aggressive treatment when an infection takes hold.
In the last 5 years drugs have become available that treat the cause of CF, not just the symptoms. A small number of people with CF have access to Kayldeco, as it is effective for their gene type.
The second drug to be licensed treats a larger number of people with CF, it’s called Orkambi. However the Government have refused to fund it on the NHS even though it has been recognised as an ‘important treatment’ by the National Institute for Health and Care Excellence (NICE).
Orkambi increases remaining life by 44% and reduces the need to hospitalise for IV antibiotics.
You are not just concerned about Orkambi. The drug companies have a pipeline of drugs that they are developing. These drugs will be more effective and will treat a larger number of people with CF. If Orkambi is not funded then it is unlikely that these future drugs will be either.
Please ask your MP to write to the Health Minister and include these points:
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.
It’s always better to write a personal letter with your own story. MPs do not respond well to multiple identical letters. However there are a few letters previously sent by our campaigners in the files below. You can use these to get you started. Customise these with your own story, include as much detail as you are comfortable with. You could even take paragraphs from each of the letters to build up your own.
Push for a response
MPs are very busy people, but they should respond to you. If you haven’t received a response in a couple of days, email again using for a response. If there is still no response, then call their constituency office. Ask their assistance ‘does …your MP… have a response to my letter?’ .
MPs are lucky if they have a small team of volunteers to manage their mail, they may just have one assistant. It’s not they don’t want to reply, it’s usually that they need encouragement to bump up your mail to the top of the pile.
Meet your MP
Meeting your MP face to face is the best way to encourage them to engage with the campaign and help in all the ways they can.
Most MPs run regular “constituency surgery’s”, so they can meet local residents. You can book a time with their office and these are usually 15 to 30 minute slots.
Remember, your MP is there to represent you, so do meet them and discuss your concerns on access to precision drugs. Ask them to write to the Health Minister as above, and ask them for advice.
Tell the group
MPs can only respond to local residents, so we need people across the country to reach all MPs. During the run up to the debate in Parliament, we managed to reach about 200 MPs, out of which 60 attended the debate. If we had reached all 650 MPs then many more would have attended the debate.