Rare Cancers Bill

Siobhain McDonagh Excerpts

Friday 14th March 2025 Commons Chamber

[Dr Scott Arthur (Edinburgh South West) (Lab)]

I beg to move, That the Bill be now read a Second time.

We all know someone who has suffered from a rare cancer—a brain tumour, childhood cancer, pancreatic cancer, liver cancer, or one of the other cancers on a long list that are unfortunately all too familiar. Each of them may statistically be considered rare, but collectively they are anything but rare. Blood Cancer UK states that rare and less common cancers account for 47% of all UK cancer diagnoses—a staggering 180,000 a year. The irony of the Bill’s title is that so-called rare cancers are not rare. Common cancers deserve attention, but so too do rare cancers.

I want to share an example of a family in my constituency who were confronted with a rare cancer. Tilly’s first symptoms were leg pains and loss of appetite. This was in September 2021, when face-to-face GP consultations were not possible. On visiting A&E, she was given ibuprofen. It was thought that she might have a virus. Six weeks later, she returned to A&E and was transferred to the cancer ward, where she was diagnosed with stage 4 neuroblastoma. On diagnosis, she was given a 50% chance of survival. Despite undergoing over a dozen rounds of chemotherapy and an operation, she sadly passed away about a year after her first symptoms appeared. Tilly was just four years old. Her father Jonathan, a headteacher in my constituency, is in the Gallery. He reached out to me after reading about the Bill. He explained his frustration that the development of new treatments for neuroblastoma has been moving at a glacial pace for too long. The same is true for many other rare cancers. This slow pace of change is not respected by these cancers, and it meant that Tilly missed her seventh birthday yesterday.

I thank Jonathan for sharing Tilly’s story, and wish him all the best as he moves to Northern Ireland with Tilly’s mum and big sister Emily to start a new job. I thank Livingston’s Team Jak for their ongoing support for Tilly’s family and many others. Neither Jonathan nor I want to suggest that the Bill would have saved Tilly, but we hope that it will improve survival rates for others, and take them beyond the 50% rate given to Tilly. That is why Jonathan is here today, and why I am here today.

Nobody told me that the most amazing thing about being an MP would be the people we meet almost daily, who want to make their community, our country or even the world a better place. That is particularly true of the people I have been humbled to meet on my journey to speaking about the Bill today, including cancer patients, survivors, the bereaved and campaigners, all of whom want just one thing: justice. Although the healthcare system in the UK is founded on the notion of equality, fairness and justice, they believe that rare cancer patients are being overlooked. Their demand for justice covers three points.

The first is that beating a rare cancer should not be less likely than beating other cancers. I have said that 47% of all UK cancer diagnoses each year are of rare and less common types. These patients already have the cards stacked against them, as they are 17% less likely to survive—an injustice caused by the relative lack of research and development in this field over many years.

Secondly, having a rare cancer should not mean being less likely to benefit from a medical breakthrough. According to Cancer52, in 2024, an astonishing 82% of patients with rare and less common cancers were not offered a clinical trial, and so were denied access to potentially lifesaving treatments. Often that is because such trials do not even exist, because there has been so little progress, and when they do exist, they are not always easy for patients to access.

Let me give an example: there is a remarkable young woman in my constituency known as Kira the Machine. Kira has been living with neuroblastoma since she was 10. She has been through it all: a prognosis of inoperability, 26 rounds of chemotherapy and eight relapses. Her and her mum, Aud, are fundraising legends locally. I do not know a school or workplace in Edinburgh that did not help when they were given just three weeks to raise £500,000 for lifesaving specialist treatment in the USA. Now 21 and fundraising for other cancer sufferers, Kira is an example to us all. She owes her life to a lung cancer drug not typically provided to treat neuroblastoma and not yet generally available in the UK for that purpose, although I understand that Solving Kids’ Cancer is working on that.

Kira appears on my social media so much, and is really well known in Edinburgh because of the fantastic campaign that she and her mum ran. She is a bit of a celebrity, if I can use that word. She came into my office recently to talk about the Bill. It was really humbling to meet her, and because she has that celebrity status, in my mind, I was also quite starstruck; I told her that it was like Taylor Swift entering my office. I resisted the temptation to exchange friendship bracelets with her, but she gave me a Solving Kids’ Cancer badge, which I am proud to wear today.

Kira’s story is important because it reminds us that repurposing existing drugs can unlock great benefits, but those benefits can be delivered at scale only through additional medical research efforts and clinical trials.

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

The NHS has a drug repurposing office. To date, it has repurposed one drug, and that was for breast cancer. Does my hon. Friend think that is good enough?

--- Later in debate ---

[Mike Wood (Kingswinford and South Staffordshire) (Con)]

I congratulate the hon. Member for Edinburgh South West (Dr Arthur), both on his good fortune in being drawn in the private Member’s Bill ballot and on his wisdom in picking this very important issue to take forward. Having been similarly lucky in being drawn in that ballot a few weeks after I was first elected, nearly a decade ago, I know the barrage of calls and emails that suddenly come your way—the very sudden and slightly fleeting popularity that comes from coming towards the top of the private Member’s Bill ballot—and the very many, very worthy causes and campaigns that come your way for you to choose between. The hon. Gentleman could not have picked a better cause than the one represented by this Bill, and if he is never again quite as popular as he was in the few hours after the publication of the ballot results, I know that he would willingly exchange all of that popularity in an instant for the difference that this legislation can make to so many lives across the country, if and when it is passed and implemented—as we hope it will be.

I stand today not just as a Member of this House but as a friend who is deeply moved by the pain of seeing someone I care about—someone who has become like family—struggle against an insidious disease. This Bill is not just another piece of legislation; it is a cry for help. It is a plea for those who are fighting for their lives—a lifeline for families who are watching their loved ones slip away, bit by bit and day after day. Too often, those diagnosed with rare cancers are left stranded in a system that does not have the answers they need.

We know the wonders that pharmaceutical companies can do in drug development, but the horrible truth is that few people are able or willing to invest the enormous amount of money needed to take forward drug development—knowing that about one in 25,000 drug candidates make it to market—for conditions that will require that drug 1,000 or 2,000 times a year, at most.

[Dame Siobhain McDonagh]

Does the hon. Gentleman agree that there is a whole range of new modern immunotherapy drugs that could be used on these cancers? They already exist, they are used to treat other people, but they are simply not tried. The cost of those trials is not overwhelming and we can do them, and the NHS repurposing project should be doing them.

--- Later in debate ---

[Monica Harding (Esher and Walton) (LD)]

I thank the hon. Member for Edinburgh South West (Dr Arthur) for bringing the Bill before the House, and pay tribute to him and to the hon. Members who have already spoken so movingly on this subject, including the hon. Member for Calder Valley (Josh Fenton-Glynn). I also pay tribute to the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) for her tireless advocacy.

The many forms of cancer categorised as rare according to the Bill might each strike a small number of people, but taken together rare cancers make up almost one in five of all cancer diagnoses. Each incident, each diagnosis, each prognosis has the same devastating impact on families throughout the country, my own being no exception. My brother-in-law, Group Captain Pip Harding, who was 53, was diagnosed with stage 4 glioblastoma this time last year. At the time, he was serving in the Royal Air Force with the US Indo-Pacific command, one of his many tours, including in Afghanistan and Iraq. He was given nine to 12 months to live. For his wife Claire and his five children, the news changed everything.

In September, I joined Pip, his family and over 400 other loved ones at RAF Benson in Oxfordshire for what was called a “dining out” or farewell ceremony, an event to allow everyone to be together with Pip, potentially for one last time. You can imagine how difficult, yet how moving, that was. A few weeks later, Pip was lucky enough to come across the pioneering brain surgeon Dr Paul Mulholland, who has been trialling a treatment called oncothermia. This employs radio frequencies to target and heat malignant cancer tumour cells while avoiding healthy cells. Oncothermia is not currently available on the NHS and each one-hour treatment costs £1,000. A tumour like Pip’s requires 36 sessions.

For most people, indeed for almost all of us, that kind of money and, consequently, that course of care, is out of reach, but the 400 friends and family who attended Pip’s farewell dinner set up a GoFundMe page, which is now covering the cost of the treatment. We love Pip, which is why we all put in as much as we could to fund it. Cancers like this, with a brutal and bleak prognosis, bring people together to fight it. I want the Government to share that resolve. Since starting the monthly oncothermia sessions in December, the first MRI scan showed that Pip’s brain tumour had reduced in size from 7 cm to 1.7 cm. Pip is, thank God, still alive and watching today. European studies now suggest that oncothermia can extend life for four to five years. For Pip’s five children, that time is everything.

But that is not the whole of my experience with glioblastoma. In 2021, my husband John’s best friend Ian died from the disease. His widow Nicola is in the Gallery. Almost unbelievably, Nicola’s sister Karen, who had done so much to help Nicola through the loss of Ian, was herself diagnosed with a stage 4 glioblastoma last year and died a few months later.

I know that others in the Chamber and in the Gallery have had their lives touched by glioblastoma, too. I am sure they will agree that in the past three decades there has been an unacceptable lack of progress made on this disease: a lack of progress in developing new treatments, making them widely accessible and keeping those diagnosed with glioblastoma here with their loved ones. In the past 50 years, cancer survival rates in the UK have doubled. Whereas in the 1970s only 25% of those diagnosed were expected to live 10 years, today over half do. That is a record of staggering success and represents countless lives extended, made richer and fuller, and even saved. When it comes to glioblastoma, however, there is far less to celebrate. The chances of living a decade with the disease are one in 100. The gains in life expectancy over recent decades can be measured in months—precious, yes, but not nearly enough.



Glioblastoma is a rare cancer, but also an exceptionally lethal one. Brain tumours are the biggest cancer killer of children and of adults under the age of 40, yet in recent years, glioblastoma has been apportioned only around 1% to 2% of UK cancer funding. In 2018, to honour Dame Tessa Jowell, the Government announced a doubling of funding for research into brain tumours, but six years later, it was widely reported that less than half of the pledged £40 million had actually been spent. During each of those years, as funding was being delayed and sluggishly deployed, more than 3,000 people in the UK were diagnosed with glioblastomas. Will the Government update the House on how the remaining funds have been and are being spent? Will the Minister assure me that as the national cancer plan is developed alongside the NHS 10-year plan, deliberate and specific consideration will be given to glioblastomas?

The Medicines and Healthcare products Regulatory Agency incentivises research on orphan drugs, granting exclusivity for manufacturers and making it cheaper to bring drugs to market once they are developed, but clearly, when it comes to glioblastomas, it has not had adequate success.

[Dame Siobhain McDonagh]

I have been to see the MHRA numerous times and have asked about repurposed drugs. Many pharmaceutical companies are worried about repurposing drugs; the fear is that if glioblastoma research were to affect the main cause for having the drug, that might make the drug less successful. We have beseeched the MHRA to treat glioblastoma separately. Would the hon. Lady support such a move?

[Monica Harding]

I would of course support such a move, and I urge the Government to listen and take action.

Getting it right on glioblastoma is vital. Despite minor breakthroughs, exciting innovations and apparently promising research leads, for this disease, there has simply not been the improvement in survival rates that most cancers have had. To put it bluntly, glioblastoma remains a death sentence—an increasingly common one. In the UK, cancer diagnoses have increased, but although there are some worrying sub-themes, this trend is largely due to increased life expectancy. However, that is not the case with glioblastoma. In the past 30 years, rates in the UK have more than doubled. There has been far more of an uptick than is attributable to us all living longer. More people are developing this disease, yet we have failed to make meaningful strides on treatment and cures, or even on giving those with glioblastoma a little more time with those dearest to them. Now is the moment to do something about that.

I welcome the Bill. I welcome its emphasis on improving research—I have already touched on drug development—and the provisions to facilitate clinical trials, because the grim reality is that for glioblastoma, those trials are hard to conduct. There are too few patients, and frequently their life expectancy is too limited. Anything that can be done to connect eligible patients with researchers faster and with less friction is valuable.

I emphasise that there are great opportunities in front of us for accelerating research and making broad advances in the battle against rare cancers. Along with almost half my parliamentary colleagues, I am proud to have pledged my support for the Lobular Moon Shot project, which advocates a boost of around £20 million over five years for research on the basic biology of invasive lobular breast cancer, with a view to developing new treatments. Despite being the second most common form of breast cancer, lobular breast cancer is in many ways treated like a rare cancer. It is under-researched, difficult to diagnose through the standard screening mammogram, and often presents fewer symptoms than invasive ductal carcinoma, which makes up the overwhelming majority of breast cancer incidents.

--- Later in debate ---

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

Through you, Madam Deputy Speaker, I want to apologise to the young black man on the Northern line tube from Colliers Wood this morning for having to spend his journey looking at me sobbing my heart out. It must have been a very odd experience. I wanted to say to him, “I am not just sad; I am angry.” I am angry at the NHS. I am angry at the MHRA. I am angry beyond belief at the National Institute for Health Research. It should be renamed the national institute for something that does not do very much at great public expense.

All these institutions are bedevilled by the desire to carry on doing what they have always done. It does not get them sacked. As the former Home Secretary John Reid—Lord Reid—constantly tells me, “Siobhan, nobody ever got sacked for continuing to do the same thing. You are only sacked if you do something different.” My God, has this morning not told us that we need to do something different? We have the tools to do something different, but the people in positions of power and responsibility choose not to. We have the best health system in the world for potential drug trials—a uniform system with well-trained doctors, great scientists, great universities and great hospitals—but do we do them? No. Do we fail people every single day? Yes. Do we threaten those doctors who try to do something different? Let me tell the House, groundbreaking oncologists are looking over their shoulder, waiting for the regulator to come and get them when one of their colleagues grasses them up. That is the atmosphere in our intellectual and health service institutions.

I could feel sorry for myself and for my loss, but I do not want that; I want things to change. All of us, from all parties, need to run fast and break things, and provide a challenge to the people running our systems. We have a drug repurposing project in the most universal health system in the world, so why are we not repurposing drugs for people with rare cancers? Why is that not being done for glioblastoma? Why is it that in May, we will open a drug trial at University College London and University College London Hospitals trust in Margaret’s memory to trial one such drug that has been in the system for years? We organised a dinner with former Prime Minister Tony Blair; some ran marathons; and others sold cakes and scones in beautiful Cornwall villages. Doing those things gave us a great deal, but why, under our system, do we have to do them?

Why is it that the trial in May, under the amazing Paul Mulholland, will be based in only one trust? It is because if we had negotiated with all the other hospital trusts that are experts in this field, it would have taken us two years to get started. Why are we outstripped by Israel, Spain, America and any number of countries? It is because we cannot get our act together to start a trial, as each hospital trust is arguing about and seeking to renegotiate every trial and every plan.

This is not new. The issue was raised by Lord O’Shaughnessy in his great report on clinical trials. That report is two years old, but we have made no progress. We made no progress under the former Conservative Government, and we have made no progress under our Government. The £40 million given to the National Institute for Health and Care Research in 2017 for glioblastoma and brain cancer drug trials has not been spent. Can any Member of the House explain to me how that is humanly possible? Do we not have drugs that we could trial? Yes, of course we do. Trials are not that complicated; we can do them if we choose to. We have the doctors to do them. We need to want to change.

I apologise to the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton), because when she came to talk to me in the Tea Room this morning, she got this at a very fast pace. I have now met four wonderful cancer Ministers, two Conservative and two Labour. They have all been dedicated, and all wanted to sort this out, but we cannot do this by edict, or by hoping and wishing. Unless we change things and unless, I dare say, some people are removed, it will never happen. All the institutions I mentioned continue to exist because they do not do things differently.

Someone diagnosed with a glioblastoma will get the same treatment that they would have got 25 years ago. They will have their tumour removed. They will be delighted that it is gone, but it is not gone; it is coming back. They will be given eight weeks’ radiotherapy. It is brutal. It will help them for a while, but the tumour will come back. Then they get given chemotherapy— the drug is temozolomide, which was approved at the beginning of the 2000s. It will help, but the tumour will come back. They have to be able to withstand that drug themselves.

Margaret could not do that. By March, five months on from her diagnosis, she could not take it; her kidneys collapsed. What happens then? We had money and good friends. At this point, I would like publicly to thank Lord Waheed Alli for the kindness and friendship he showed us through Margaret’s journey. The treatment that he has experienced from the press is absolutely appalling. He helped us on our way. But what about somebody with no money who cannot fundraise? Their life ends at the chemotherapy. There is nothing on the NHS, but those lucky enough to have the money can find a way.

I am really grateful that the brother-in-law of the hon. Member for Esher and Walton (Monica Harding) is on the oncotherapy machine. My sister fundraised for that machine, because we had to go to Dusseldorf to have it, so we brought it here. It is great that he is receiving much benefit from it. I know that many other people are, too.

Why is the NHS, which is so risk-averse that it will not allow slightly alternative therapies for cancer, happy for people who are really ill to get on a plane and go to a different country? Is it because it does not see what happens in another country, so that is okay? I have told the stories of holding my sister’s head as she was sick in a bucket in terminal 5 at Heathrow airport, of carrying her on to a plane in the hope that the air stewardess would not see how she was, of lying next to her overnight hoping that she would be alive in the morning, because what was I going to do in a hotel in Germany, where I could not speak that language? That is my experience, but I am only one of thousands and thousands of people who do this every year, including children, because our system will not allow the use of novel treatments.

Why? Why can’t we change things? Why don’t we get up every single day and want to cure something? I do not know about other hon. Members, but since I joined the Labour party, and since I became an MP in 1997, I have got up every day and hoped that we could make things better in some way. I do not understand why our systems do not want to do the same thing. I want to understand, but it is beyond me. If there are drugs that could cure or give longer life to people with glioblastoma, why don’t we trial them? That is not beyond our ability. We have the money to do it. If we do not have the money, we will raise it. We just need the opportunity.

I do not know why we do not have that wish to achieve. I was given some hope yesterday by the proposed abolition of NHS England, because something needs to change. I do not know whether that is the right or wrong thing to do, but we need to liberate people to do things. Let us face it: in the end, only people who are well motivated and willing to take a risk can change things. Beyond that, people will continue to die, will continue having to go to other countries, will continue having to spend large amounts of money. People not lucky enough to be in that position will just die prematurely.

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill and for the courtesy he has always shown me, which must have been difficult at times as I sat shouting at him in Portcullis House about how everything was useless and hopeless. In my calmer moments, I understand that progress begins with small steps. I am frustrated that those steps are too small. I am delighted that there will be one database for trials, but if there are no trials, the database does not get us very far.

We will have a report on the orphan drug Act in 18 months’ time. In that period, over 3,500 people will have been diagnosed with a glioblastoma, and many of them will have died. Why is it going to take us 18 months? Why can’t we change things now? Why, in spite of the huge support we have had for the Bill from the Secretary of State for Health, could we not get something much more fierce in it? It is not a criticism; it is an observation. I know progress begins slowly, and I am grateful for my hon. Friend the Member for Edinburgh South West taking up the Bill and for having the calm demeanour that I lack, because I do not think the Whips would have accepted anything that I would have come up with as a private Member’s Bill.

We need a revolutionary attitude. We either see and harness progress, or we come back next year, the year after and the year after that to ask why there has been no progress. All of us, individually and communally, need to dedicate ourselves to that progress and to keep asking the questions, being angry and simply refusing to accept that nothing can be done.