Cystic Fibrosis Drugs: Orkambi

Stephen Morgan Excerpts

Monday 10th June 2019 Westminster Hall

[Stephen Morgan (Portsmouth South) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bailey. Kick-starting a social media campaign, meeting local politicians and working tirelessly alongside organisations such as the Cystic Fibrosis Trust—do those sound like the actions of a five-year-old? Ivy Weir is a remarkable local campaigner who I am lucky to have living in my city. With the support of Gemma, her dedicated mother, Ivy lives with cystic fibrosis. She has carved a path into uncharted territory when it comes to accessing Orkambi.

Ivy helped me send out 650 letters to all MPs asking them to take part in the #StrawfieChallenge. She has been on national news, alongside her mother—committed campaigner Gemma Weir—calling for that change. She has helped deliver hundreds of letters to 10 Downing Street, calling for Orkambi to be free on the NHS. Ivy, Gemma and other CF activists have shown immense dedication and resilience in the face of adversity; now we in Westminster must do the same.

There have been five parliamentary debates about access to these medicines, yet we still see no light at the end of the tunnel. Over a year ago, the Prime Minister called for a speedy resolution to this emergency; there has still been no progress. We have the chance to improve the lives of thousands of people across our nation. There has been enough dialogue; now we need to see action.

As we have heard today, over 10,000 people in the UK live with cystic fibrosis—one in every 2,500 babies born. In the last four years, this genetic disorder has tragically claimed the lives of 210 people. What makes these figures more harrowing is that drugs are available to relieve many of the symptoms and greatly improve the standard of living for those with CF, including improving life expectancy.

Orkambi can make a real difference. The obstacle to the widespread implementation of these drugs is the cost; I find that morally repugnant. We live in a nation that forged an NHS from the ashes of world war two, that prides itself on universal healthcare for all and that is the envy of the world, because healthcare is free at the point of delivery and based on clinical need, not ability to pay. As such, the UK is a global bastion when it comes to cystic fibrosis outcomes. However, if Orkambi and other drugs are not rapidly added to the list of drugs available on the NHS, we will lose this valued status. Letting costs stand in the way of saving lives does a great disservice to the principles the NHS is rooted in: universality, equality and fairness.

The Health and Social Care Committee has done vital work in carving out potential ways forward. Its recent calls for interim access would allow negotiations to continue, without the unnecessary suffering of those living with CF. However, the non-binding nature of the suggestions means that three months on, no such agreement has been set in motion. Where NHS England and Vertex remain at loggerheads, NHS Scotland has established a deal with the pharmaceutical company. This will create a brutal postcode lottery. The level at which people suffer from cystic fibrosis is currently determined by where they live in the UK. I am confident that this was not the NHS envisaged by its founders nearly three quarters of a century ago.

I have seen the effects on my constituents in Portsmouth at first hand; I will make every effort to ensure their concerns are raised. In 2017, I wrote to the right hon. Member for South West Surrey (Mr Hunt) in his capacity as Secretary of State for Health, urging a swift response. In 2018, I wrote to the Secretary of State for Health and Social Care, the right hon. Member for West Suffolk (Matt Hancock), on his appointment, asking him to do the same. In 2019, I wrote to the Prime Minister, asking her to intervene. Now is the time for leadership on this most pressing of matters. We must see progress and we must see it quickly.

It has been announced that Vertex Pharmaceuticals could potentially develop treatments for 90% of those who live with CF over the next five years. If solid, robust negotiating foundations are not established now, that could undermine patient access for generations. Today, I call on the Department of Health and Social Care, Vertex and the Prime Minister to make this a national priority and help to bring an end to the suffering of thousands of people across the UK.