Rare Cancers Bill

Nusrat Ghani Excerpts

Friday 14th March 2025 Commons Chamber

[Patricia Ferguson (Glasgow West) (Lab)]

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this Bill. If, as we always say, politics is the language of priorities, then my hon. Friend has got his absolutely correct. I thank all Members who have shared their experiences and their stories, some incredibly moving. They should be what inspires us to take forward all the action we are proposing today.

I was struck by the fact that the hon. Member for Wokingham (Clive Jones) and I have something in common, which we probably would not want to have in common, in that we were both diagnosed with breast cancer in 2008. I have to say, my breast cancer was a strange breast cancer, and it always feels slightly strange talking about it, because no one’s ever heard of it. It is not a rare cancer as such, because it is a breast cancer, although there are some who argue it is actually a soft tissue sarcoma—whatever, it was treated as a breast cancer. It is called a phyllodes tumour.

Unlike other breast tumours, phyllodes tumours do not go into the ducts, but into the connective tissue. It presents differently from other cancers of the breast, and the treatment is also different, in that the only treatment that works is excision. Excision can be anything from a lumpectomy to a mastectomy. The hope is that there are clear margins, which mean the patient will be okay, but—and it is a big “but”—when a malignant phyllodes tumour is present, it can spread, and it can be difficult or impossible to treat. That is when it becomes a very different outcome.

I mention it today not because it is a rare cancer, but because it can be difficult to diagnose. It does not show up in a mammogram, for example, and there is no definitive explanation why such tumours occur. Some research is going on just now, but it is not conclusive as yet. A lot more work needs to happen, and because incidence is so low, it is difficult to research. The things we know about it for certain seem random to me. They tend to occur more often in the left breast. Why? I have no idea. They usually occur when a patient is in their 40s. As I have said, they do not seem to respond to chemo or radiotherapy, and they are not thought to be genetic or hormonal.

The reason I mention my case is that it can be a lonely thing to have an unusual cancer. When trying to explain it to family and friends, you say, “No, it did not show up in a mammogram. No, I am not getting chemotherapy or radiotherapy. No, I do not know why it happened. No, I had not heard of it either.” You begin to doubt yourself a little, and you begin to question what is actually going on. For someone with a very rare cancer, it must be incredibly difficult when there is not a background of research, not anything that they can read, and no one can give them a pamphlet about it and tell them what is happening.

It seems to me that we should know more about cancer full stop. We have got to 2025, and we know some things about cancer. We know how to treat some cancers, but there are so many others that we do not have the answer for. We need people to be diagnosed more quickly, which means that we have to have the research. We need people to have the best possible treatment, which means we have to look at the drugs and find out what works and what does not work, and where a drug can be transferred from one thing to another successfully. Crucially, we have to know why it is that some people get cancer and others do not.

This Bill will make a huge difference to the lives of some of the people we have heard about today. For some, as we know, it will not be soon enough. It is the responsibility of every single one of us to make change happen, and we have an opportunity today to take that step forward. My hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) spoke about her sister, Margaret, who I worked with for a time in the Labour party. While I was listening to the other speeches, I was reflecting on what my hon. Friend said. I think we all need to be angry. We need to say—to shout it from the rooftops—that change begins today.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

That was very powerful. I call Leigh Ingham.

--- Later in debate ---

[Johanna Baxter (Paisley and Renfrewshire South) (Lab)]

I will be brief, because I understand that we are at the end of the debate, but I rise to support the Bill and pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing it forward, and for the dignified, collegiate manner in which he has gone about things. Up to 95 people in Paisley and Renfrewshire South will be facing a less survivable cancer. That is 95 people who will wait longer for a diagnosis, will face a postcode lottery to access specialist treatment, and will be left asking why there are so few treatment options available.

The truth is that rare cancers do not receive the research attention or funding that they need. The Bill would take decisive action to change that. It would introduce measures to break down systemic barriers preventing research and innovation in rare cancers. These are not abstract policy changes but lifesaving reforms that would give patients with rare cancers greater access to clinical trials. Researchers would have better tools to study the diseases, and pharmaceutical companies would be given stronger incentives to invest in treatments that could transform lives.

Behind every rare cancer diagnosis is a person fighting for their future, a family searching for answers and healthcare professionals looking for better treatment options. We cannot allow those individuals to be left behind simply because their condition is considered rare. We have the opportunity to change that. By supporting the Bill, we send a clear message that no cancer is too rare to matter, and that no patient should be forgotten. I am proud to support the Bill and thank my hon. Friend for bringing it forward.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Secretary of State.

--- Later in debate ---

[Dr Arthur]

With the leave of the House, I would like to thank a few people. First and foremost, I thank the Minister for her speech. I met her yesterday, and she was filled with genuine passion, energy and excitement for this subject. It is great to see her come here today and use her power to support this Bill, and let us hope that it passes.

I thank the shadow Secretary of State, the right hon. Member for Melton and Syston (Edward Argar). Before this debate, people told me that he was respected across the House, and he has shown why. I must also thank my hon. Friend the Member for Crawley (Peter Lamb). People in the Gallery will not know this, but he has worked really effectively, right throughout the debate, to ensure that all the people who wanted to speak could do so. I thank him for that.

I thank the Whips and the Speaker’s Office for managing the debate sensitively, because this is quite a difficult subject, and I thank you, Madam Deputy Speaker, because it was you who pulled my ping-pong ball from the goldfish bowl. It was very skilfully done.

I wish I had time to thank everybody who spoke in the debate. Sadly, I do not, but they have my thanks and respect. They have done a great job of thanking each other as the debate has proceeded, so I thank them all. I will watch the debate again over the weekend, because it has been quite incredible and quite moving.

I thank our colleagues from the Department of Health and Social Care, who are in the officials’ box. They have been fantastic. Without them, this Bill would not have happened. Privately, there have been a few Sir Humphrey moments, but those from the Department have been absolutely fantastic, and that was very clear yesterday when I met the Minister.

I thank the charities that backed the Bill. They did not just back it; they helped get it to where it is. They were not just backing a finished product; they influenced and shaped it. I think that is why so many people are here to support it.

I thank the staff in the Public Bill Office for their patience and so much more, and I thank the staff in my office. I think Noel and Solomon are here today, but it is a team effort. Back in Edinburgh are Lucie, Salim, Xavier, Evie and Hannah. [Hon. Members: “Hear, hear.”] They deserve that.

In all the contributions today, we have heard evidence that people with a rare cancer diagnosis face great injustice, because their chances are so much slimmer and they face so much uncertainty. We have shown that we want change. We are not just being angry; we are using that anger to get even, which is really important. We talk in this Chamber, but often there is no action. Today we have talked and agreed, and hopefully there is going to be action.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

That was most definitely Parliament at its best.

Question put and agreed to.

Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).