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Life-saving drugs campaign timeline

Take a look at the latest updates in our Stopping the Clock campaign for fairer access to precision medicines for people with cystic fibrosis (CF) across the UK.


Campaign timeline

Take a look at our news stories below for more information on each stage of our fight for fairer access to life-changing medicines for people with cystic fibrosis. Use the following colour code to find updates on the treatment you are interested in or view the actions we have taken to promote access to all medicines.

Access to medicines 
Orkambi
Kalydeco
Other treatments

2019 

  • 12 November - Richard Pengelly, Permanent Secretary of the Department of Health in Northern Ireland, announced on 12 November that a formal agreement with Vertex Pharmaceuticals will be finalised and signed in the very near future, and that clinicians will be able to begin prescribing the drugs to the first eligible patients within the next few weeks.  
  • 29 October The Department of Health in Northern Ireland confirmed its intention to complete a deal with Vertex Pharmaceuticals to make life-saving drugs Orkambi and Symkevi available to eligible people with CF living in Northern Ireland.
  • 24 October NHS England announced that people with cystic fibrosis (CF) living in England who stand to benefit from life-saving drugs Orkambi and Symkevi will receive them as part of a two-year managed access agreement with the manufacturer, Vertex Pharmaceuticals.
  • 16 October - Trust Chief Executive, David Ramsden met with the Department of Health Permanent Secretary in Northern Ireland, Richard Pengelly, to discuss how Orkambi and Symkevi could be made available in Northern Ireland.
  • 12 September - The Scottish Government reached an agreement with Vertex with support from the UK CF Registry and announced a five-year deal that will see access to Orkambi and Symkevi for everyone with cystic fibrosis in Scotland who stand to benefit from the drugs. 
  • 27 August - On 27 August 2019, the Trust sent letters to health bosses in ScotlandWalesNorthern Ireland and England to urge them to finalise talks and reach a deal with Vertex. 
  • 12 August - 12 August – SMC announces it is not able to recommend Orkambi and Symkevi for routine use by NHS Scotland. Vertex and the Scottish Government confirm that discussions continue to provide access. Trust announces campaign day for 27 August to demand both parties reach an agreement for all UK nations. Read the full story
  • 25 July - Ian Austin MP writes to Vertex CEO Jeff Leiden and Health Secretary Matt Hancock requesting they meet with each other and to set out how they plan to solve the issue of access to life-saving drugs, in letters signed by 117 MPs.
  • 24 July David Ramsden sent a letter to new Prime Minister, Boris Johnson, asking him to join us in the fight for access to life-saving drugs.
  • 17 July David Ramsden, Trust Chief Executive, met with Vaughan Gething, Cabinet Secretary for Health and Social Services in Wales, Andrew Evans, Chief Pharmaceutical Officer, and Miranda Morton, Senior Policy Manager Pharmacy and Prescribing Branch Welsh Government to urge the Minister to take an active role in delivering access as soon as possible, including exploring interim access.
  • 9 July - Ian Austin MP hosted a roundtable meeting with the Trust and key supportive MPs across parties in Westminster to discuss increasing the pressure for a resolution on access to medicines
  • 9 July - Dr Sarah Wollaston quizzed Matt Hancock, Secretary of State for Health and Social Care, during a select committee evidence session.
  • 9 July - Welsh Assembly petitions committee discussed evidence from Vertex Pharmaceuticals indicating an intention to submit Orkambi and Symkevi to the All Wales Medicines Strategy Group for review. 
  • 28 June - CEO David Ramsden sent two letters to the Conservative leadership candidates Boris Johnson and Jeremy Hunt, asking them to support the Trust's campaign for access to life-saving drugs.
  • 11 June - Trust submits correspondence to Welsh Assembly petitions committee
  • 10 June - Westminster hall debate on access to cystic fibrosis medicines.
  • 23 May - Vertex and NHS England respond to Health and Social Care Committee request for progress updates as part of the availability of Orkambi inquiry
  • 16 May - On the anniversary of Prime Minister Theresa May expressing her hope for a "speedy resolution" on Orkambi, during PMQs, a bouquet of 65 yellow roses is handed in to 10 Downing Street with a letter from MPs calling for action.
  • 11 March - Vertex, NHS England and NICE meet with Matt Hancock to re-commence discussions on cystic fibrosis medicines
  • 11 March - Trust Chief Executive David Ramsden meets with Vertex CEO Jeff Leiden
  • 7 March Vertex, NHS England, NICE and patient and clinical representatives gave evidence at an oral hearing as part of the Health and Social Care Committee's inquiry into access to cystic fibrosis medicines.
  • 7 March - Over 200 members of the CF community were joined by MPs for the Trust's demonstration for life-saving drugs in Parliament Square.
  • 4 March - Trust meets with Secretary of State for Health, Matt Hancock
  • 25 February - Health and Social Care Inquiry submissions close having received over 330 submissions
  • 25 January​ - Health and Social Care Select Committee announces evidence hearing and calls for evidence from the cystic fibrosis community

​2018 

  • 20 December - The Scottish Government confirmed that a deal has been reached with Vertex pending the submission of Orkambi and Symkevi to the Scottish Medicines Consortium (SMC). In the meantime, interim access will be possible through the PACS Tier 2 system.
  • 21 November - Heidi Allen MP tables PMQ regarding access to Orkambi (watch it here)
  • 21 November - MSPs, the Trust and families of those with CF meet in Holyrood, hosted by Jackie Baillie MSP.
  • 19 November - Parliamentary event sponsored by Ian Austin MP is held in Westminster to mark three years since Orkambi was licensed.
  • 14 November - Welsh Assembly Members attend cross-party meeting chaired by David Rees AM to discuss access to medicines for cystic fibrosis.
  • 9 November -  Health and Social Care Select Committee in Westminster announces inquiry into the availability of Orkambi
  • 1 November Symkevi is licensed by the European Medicines Agency
  • 29 October - Scottish Health Minister, Jeane Freeman announces negative recommendation on the use of the ultra-orphan pathway for Orkambi in Scotland.
  • 2 October ​- Trust met with the CF Community in Cardiff to discuss access to medicines.
  • 27 September - Vertex Pharmaceuticals, NICE and NHS England met following summer impasse to restart negotiations on Orkambi.
  • 24 September David Ramsden, the Chief Executive of the Trust, wrote to the CEOs of NICE, NHS England and Vertex Pharmaceuticals to call for a positive outcome on access to Orkambi.
  • 5 September Trust met with the Medicines and Pharmacy Division of the Scottish Government to discuss access to Orkambi and new precision medicines in Scotland.
  • 5 SeptemberTrust met with Matt Hancock MP, Secretary of State for Health and Social Care, to talk about the Government’s position in future negotiations for Orkambi and other treatments.
  • 8 August - Trust met with the CF community in Glasgow to discuss access to medicines in Scotland.
  • 17 July - 22 MPs attend adjournment debate tabled by Ivan Lewis MP on access to Orkambi on NHS England. Read what was said and the minister's response here.
  • 10 July Trust urges new Health Secretary to join fight for access to precision medicines. Read the news story here.
  • 4 July - Trust meets with Health Secretary Jeremy Hunt.
  • 4 July ​- Vertex to meet with NHS England for further discussions.
  • 26 June - Trust launch Early Day Motion (EDM) tabled by Rt. Hon Sir Mike Penning around access to Orkambi.
  • 25 June - Health and Social Care Select Committee release correspondence between Chair, Dr Sarah Wollaston MP and Health Secretary.
  • 22 June ​- CF community protest for Orkambi in London and Belfast on Wear Yellow Day.
  • 19 June - Health Secretary responds to oral parliamentary questions around Orkambi from Ian Austin MP and Dr Sarah Wollaston MP.
  • 14 June - Trust meet with NHS England Special Commissioning Team.
  • 12 June - Vertex meet again with NHS England for negotiations on Orkambi.
  • 12 June - Access to medicines is debated in Holyrood after a motion tabled by Maurice Corry MSP.
  • 25 May - Vertex meet with NHS England for the second time 
  • 23 May - MSPs meet in Holyrood at cross-party meeting to discuss access to medicines for people with cystic fibrosis.
  • 16 May - Teresa Pearce MP asks Prime Minister Theresa May about access to Orkambi during PMQs.
  • 16 May - 1,000 letters to Prime Minister Theresa May from children with CF and their families asking for access to Orkambi are handed in to Downing Street. Watch our video.
  • 15 May Welsh Assembly petitions committee discuss Orkambi petition and issue further correspondence.
  • 2 May - CF Healthcare professionals write to Vertex, politicians and decision-makers regarding access to precision medicines.
  • 27 April - A cross-party letter was sent to ministers from Ian Austin MP and over 100 signatures from MPs calling for an urgent meeting to discuss access to precision medicines.
  • 25 April Vertex met with NHS England on Wednesday 25 April to discuss further negotiations around access to precision medicine Orkambi and future treatments.
  • 19 March - a debate to make Orkambi available on the NHS is held in Westminster Hall following a community-led parliamentary petition. Read an update on the debate.
  • 16 March - NHS England responds to Vertex portfolio with a counter proposal and releases a statement. Vertex then release a statement in response to NHS England's counter proposal
  • 8 March - Vertex submits a portfolio approach to NHS Scotland.
  • 28 February - roundtable meeting at Westminster, chaired by Ian Austin MP, continues discussions with Vertex about access to Orkambi.
  • 15 February - Vertex submits a proposal of a 'portfolio approach' to NHS England, which would cover access to current CF medicines and future CF treatments like Symdeko.
  • 2 February - Vertex announces plans for phase III trials of triple combination therapies that could benefit more than 90% of people with cystic fibrosis.
  • 23 January - Welsh Assembly Petitions Committee decide against a debate on access to Orkambi, but write to the Welsh Health Minister regarding the current Welsh Government's position, ahead of further potential discussions and debates on the issue. 
  • 22 January - Trust meets with Vertex to demand that they act and present a bold deal to make their medicines available across the whole of the UK and released a statement.
  • 10 January - a petition is handed into Welsh Assembly for access to Orkambi in Wales. The topic will be automatically considered for debate. 

2017

  • 11 December - a response is received from Richard Pengelly to the cross-party letter in Northern Ireland.
  • 29 November - the Trust organises an event, sponsored by Ian Austin MP, to get MPs from across all political parties in one room with representatives from the Trust and campaigners to share their own personal stories and highlight why the Stopping the Clock campaign is so vital to those living with cystic fibrosis.
  • 10 November - the Trust sends letters to Jeremy Hunt, Secretary of State for Health and Richard Pengelly, Department of Health Permanent Secretary, calling for a timely resolution to the ongoing negotiations between Vertex and Health and Social Care Northern Ireland. These letters are signed by 66 MLAs in Northern Ireland from a number of different parties.
  • 3 November - phase III trials for a double combination therapy using tezacaftor and ivacaftor have shown positive results for people with two copies of F508del and one copy of F508del and a 'residual function' mutation.
  • 12 October - Wales extends access to Kalydeco for people with an R117H mutation. 
  • 5 September - Vertex issues an update on proposals to increase access to Orkambi.
  • 19 July - Vertex announces promising results from trials into their new triple combination therapy.
  • 26 June - Trust Chief Executive David Ramsden wrote to Vertex and the NHS in all four UK nations appealing to them to reach an agreement on pricing for Orkambi and end the wait. Read the responses from NHS Scotland, NHS Wales, the HSC Board in Northern Ireland and Vertex Pharmaceuticals.
  • 26 June - the Trust holds a day of protests in England, Northern Ireland, Scotland and Wales, to call on Vertex and governments across the UK to agree on an affordable price that can make Orkambi immediately available to those who so desperately need it. Read about the protests
  • 21 March - the Trust meets with the new Health Minister, who states that the Government is still open to a deal, and is looking forward to hearing new proposals from Vertex.

2016

  • 13 December - the Trust holds a parliamentary debate encouraging the Government to help implement the recommendations in the Accelerated Access Review.
  • 5 December - NHS England announces that Kalydeco will be made available to two-to-five-year-olds in England, benefitting around 50 children.
  • 24 November - the Trust launch an e-action ahead of their parliamentary debate on Orkambi.
  • 27 October - Scotland becomes the first of the devolved nations to grant two-to-five-year-olds access to Kalydeco.
  • October - Orkambi negotiations between Vertex, the Government and the NHS get underway.
  • 17 June - NICE gives final rejection of Orkambi for use on the NHS in England - the Trust suggests a solution using the UK CF Registry to give people access while allowing data on its efficacy to be gathered.
  • 19 May - Orkambi and Kalydeco are rejected in Scotland, hundreds of people use the Trust's e-action to contact their MSPs to urge the Scottish Government to support the Trust's solution and have Orkambi and Kalydeco provided to those who need it by the New Medicines Fund.
  • 1 April 6,000 people use the Trust's e-action to contact their MPs in support of the Trust's proposed solution to the issues around providing Orkambi, leading the Government to state it is ready to discuss proposals to allow people access to Orkambi at a cost-effective price. This follows NICE's initial rejection of Orkambi for use in the UK despite evidence of its efficacy, stating cost and a lack of long-term evidence about its benefits.
  • 2 March - Carly Jeavons, a young mother with CF, presents the Trust's petition at Downing Street.
  • 28 January - the Trust launch a petition that 20,000 people go on to sign, calling for the NHS and drug companies to take responsibility for ensuring precision medicines are available to those who need them as soon as possible.

2015

  • December - the CF community take to Twitter to tell Ian Austin MP how much precision medicines mean to them. Ian Austin uses these powerful stories in a parliamentary debate that sees the Government go on record to support the Trust's campaign.
  • November - almost 1,500 passionate campaigners take part in the Trust's survey about what precision medicines mean to them, shaping the Trust's submission to the National Institute for Health and Care Excellence (NICE) as it prepares to consider Orkambi.

Orkambi

Orkambi is the second precision medicine to be licensed in the UK for people with CF and treats the F508del mutation, which around 50% of people with CF have. It is not currently available on the NHS.

Kalydeco

Kalydeco is the first precision medicine to be available on the NHS and is effective in just under 10% of people with cystic fibrosis. Kalydeco is currently available to every eligible person over the age of two in the UK.

Other precision medicines

A double combination therapy and a triple combination therapy are currently being trialed to see how they could help to treat up to 90% of people with cystic fibrosis. Recent results are positive.