(1 year, 2 months ago)Westminster Hall
It is a pleasure to see you in the Chair, Mr Bailey. I congratulate the hon. Member for Sutton and Cheam (Paul Scully) and all the other Members who have made thoughtful and powerful contributions. As we heard, it is now more than a year since the Prime Minister called for a “speedy resolution” to this crisis. For years, patients and their loved ones have seen their health decline, knowing that a possible solution has been sitting on the shelf the whole time. I will use two personal stories to illustrate why this issue is so urgent and important.
My constituent Clare Dempsey has been advocating for patient access to Orkambi and the associated precision treatments on behalf of her son, Jake Wright, who is nine and was diagnosed with cystic fibrosis at birth. His story is an insight into the relentlessness of treating the symptoms of the disease. He has to take 200 tablets a week, undergo two hours of physio a day and use nebulisers morning and night. Every year, he spends two weeks in hospital in isolation, receiving intravenous antibiotics. Jake has lost 16% of his lung function and a recent CT scan of his lungs showed early signs of bronchiectasis, which can leave lungs more vulnerable to infection. Precision medicines such as Orkambi that tackle the underlying causes of CF could have prevented those irreversible changes to Jake’s health. Imagine how it must feel as a parent to know that.
There is also the associated emotional and financial pressure on families. Clare is a cancer researcher by profession, but she has had to go part time to care for Jake. Not only is the NHS losing her skills but she is unable to earn money for the family, who have had to put their house on the market. If the root causes of Jake’s cystic fibrosis go unaddressed, the level of care he will need from his family and medical professionals will only increase. We talk about cost-benefit analyses, but NICE cannot take into account that effect on families, the NHS and wider society. We need to bear that in mind carefully when talking about this issue.
I want to talk about another affected family. My constituents Sadie Lawty and her husband Steve Sanders have a three-year-old daughter, Eloise, who is a lovely young girl I have had the great pleasure of meeting. She was diagnosed with cystic fibrosis when just two weeks old. It was a bombshell to Sadie and Steve, because as far as they knew there was no family history of it. At the time, they were told there were many reasons to be hopeful, because a new family of pharmaceuticals that targeted the underlying causes of cystic fibrosis had recently been introduced. They were given hope, but their hope has been frustrated.
Orkambi has existed for the whole of Eloise’s life, and its positive effects are long established. The frustrating reality for Eloise and her family is that they are no closer to accessing it than when she was first diagnosed. As we heard in Jake’s case, there is never a day off when combating the condition. Medicines have to be administered around the clock and there are endless trips for assessments and treatments. In fact, while we are having this debate Eloise’s parents are taking her to the doctor’s for her annual review, essentially to find out how much damage has been caused by cystic fibrosis so far.
Accessing Orkambi could help sustain Eloise and offer her parents some longer-term peace of mind. It is not a wonder drug, but it is a source of hope, so it is frustrating for Eloise’s family that their hope has been dashed. Eloise is doing well at the moment; hopefully that will continue. She will start nursery soon. At three years old, she has a while before the cumulative effects of cystic fibrosis really set in, but many people cannot afford to wait much longer.
I think back to my first brush with the condition, when I had a girlfriend who was a nurse. She was looking after a very charming young man who sadly died while still in his teens. That brought home to me the personal tragedy involved with this condition. It is therefore vital that the Government take responsibility for pulling people together and finding a solution among NICE, the NHS and Vertex as quickly as possible.
There are potential ways forward. My hon. Friend the Member for Bristol East (Kerry McCarthy) outlined solutions such as Crown use licences to overturn the monopoly and access to drugs through clinical trials. The Chair of the Health and Social Care Committee, the hon. Member for Totnes (Dr Wollaston), talked about the interim arrangements in Scotland, which may provide for a way forward. Whatever that way forward is, we need to find it.
I am pleased to see the Minister in her new role and hope that, as my hon. Friend the Member for Dudley North (Ian Austin) said, she will really grip on to this issue and try to find a solution that delivers for all the people I talked about, for the people who need the drug now, for the people in the Public Gallery, and in memory of the people who died. I plea with her to get the Government to get people around the table and find a solution.
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 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 of 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.