Rare Cancers Bill

Sam Rushworth Excerpts

Friday 14th March 2025 Commons Chamber

[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.

[Sam Rushworth (Bishop Auckland) (Lab)]

As the hon. Lady is explaining very well, invasive lobular breast cancer is not classed as a rare cancer. I am concerned that it would not come within the scope of this Bill, so I gently ask if it could be widened at the next stage. As she says, lobular breast cancer has many characteristics of a rare cancer.

[Monica Harding]

I thank the hon. Gentleman for that intervention. Yes, lobular breast cancer is treated in many ways like a rare disease.

I recently met my constituent Kate, who was diagnosed with lobular breast cancer in 2023. She explained to me that because almost all breast cancer research is based on the ductal variant, women like her are diagnosed later and often receive treatment oriented towards a cancer with a different biology from lobular cancer. Those two factors result in higher recurrence and lower survival rates. Kate has been in remission for more than a year, and has become an advocate for research. On her behalf, I ask the Minister whether she has met with the Lobular Moon Shot campaigners. What steps are the Government taking to increase research into the cancer? What consideration has she given to updating guidelines for the National Institute for Health and Care Excellence to encourage the use of MRIs to diagnose lobular breast cancer earlier?

The moon shot idea is the right one. In fighting cancer we should set ambitious goals, and we should innovate until we meet them. Moreover, as the Apollo project shows, research into seemingly narrow things often has spillover effects, producing vast, unanticipated benefits. That is often true when it comes to orphan drugs. To take just one example, Gleevec has changed the game, and not just for one rare form of leukaemia; it is now used to treat a range of other cancers and conditions.

The British pharmaceutical development sector is exceptionally strong, and now is a moment of potential. On genome mapping, artificial intelligence, biotech, immunotherapy and cancer vaccines, the UK is in a position to transform and save lives. I recognise the limited scope of the Bill, but I believe it to be vital. This House must take a keen interest in accelerating and incentivising research into rare cancers, including glioblastoma. This legislation meaningfully advances that goal.

I will speak briefly about young people and children, and specifically a lovely girl called Maddie Cowey. At the age of 18, Maddie was diagnosed with an alveolar soft part sarcoma. Sarcoma is an uncommon cancer that can occur anywhere in the body. All cancers in someone of Maddie’s age are considered rare, but in her case, the classification was ultra-rare. Partly in consequence, it took five months for her to receive a diagnosis. Maddie had just started university. She recalled that at the time it

“felt like my life was falling apart. In many ways it was and it did. It was a very lonely place.”

Maddie was diagnosed almost 10 years ago now. There are no approved treatments for Maddie’s type of rare cancer, and she is undergoing a clinical trial. It is likely that she will remain on treatment for life. Maddie is amazing; she is brave and she will not let cancer define her. I bring up her story because cancer in young people is so uncommon that often it is diagnosed later. Neither medical professionals nor young people expect it, but the later a diagnosis comes, the more likely the cancer is to be lethal. What steps are the Government taking to ensure that the rare cancers afflicting young people are caught earlier?

Finally, I am reminded of something that Emily Dickinson once wrote about hope:

“I’ve heard it in the chillest land, and on the strangest sea”.

We must get this right. We must give sufferers hope. We owe that to Pip’s family—his wife Claire and his five children—and to Nicola in the Gallery, and her and Ian’s sons Adam and Oliver, and to so many others who have suffered and who are here with us. I believe that we can.

--- Later in debate ---

[Sam Rushworth (Bishop Auckland) (Lab)]

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing the Bill to the House, and join him in paying tribute to our hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her campaigning, and for her powerful speech calling for a revolution in attitudes. I also thank my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) for his very moving speech. As somebody who lost a brother much too young, I was deeply moved by his words.

I have come here today to speak on behalf of my constituent, Katie Swinburne. She is a much-loved school teacher—in fact, she was the school teacher of one of my staff—and a mother of three who was diagnosed with invasive lobular breast cancer. As was mentioned a moment ago, lobular breast cancer is not classed as a rare cancer—in fact, it is the second most common type of breast cancer in the world, with 8,500 diagnoses annually in the UK alone—but it shares many characteristics of rare cancers in the sense that it is very difficult to detect. In Katie’s case, as in many others, it did not initially form as a lump in the breast, for example. It has distinct genetics, so is not detectable in genetic tests, and it is very easily missed in mammograms and ultrasounds.

As a consequence, many of the women who get this form of cancer will not be diagnosed until long after it has already spread. I am also told—thankfully, Katie is watching today; I received a WhatsApp message from her a moment before speaking—that a key point that I should make to the Minister is that, because lobular breast cancer presents differently from other forms of breast cancer and is not separated out in clinical trials, there is very little trial data on it. I met recently on Zoom with Katie and others who have been campaigning for the moonshot. This is not a lot of money; it is simply £20 million of funding that the University of Manchester could use to better understand the biological architecture of this type of cancer. That would lead to the possibility of developing the right treatments, because it currently has no specific treatment. This is a gentle request, really, that in the next stage of the Bill lobular breast cancer be considered alongside the rare cancers for which it already provides.

I finish by paying tribute to Katie and all the many brave individuals I have met. I cannot imagine what it is like to be young and have parenting responsibilities and be diagnosed with an advanced stage of cancer. Many of those campaigning know that they might not live to see the day when the better drugs and treatments are available, but they are bravely taking up this cause on behalf of those who come after them.

Katie was bravely doing a mile a day sponsored walks. My predecessor in this place joined her on one of those miles, and although we disagree about many things politically, we have already seen today that this is a cause that unites, because there is little—in fact, there is nothing—more precious in life for any of us than time spent with the people we love. Money cannot buy that—nothing can buy that—and, as my hon. Friend the Member for Mitcham and Morden made clear, the decisions we make in this place can have a real impact in the lives of others.

Government Policy on Health

Sam Rushworth Excerpts

Monday 9th September 2024 Commons Chamber

[Wes Streeting]

First, my right honourable friend, Alan Milburn, does not have a role in the Department. Secondly, of course we will publish, in the routine way that we do, details of meetings held in the Department and who attended them. I gently suggest that if the hon. Member has not made his way there already, there are plenty more interesting things to read in the House of Commons Library.

[Sam Rushworth (Bishop Auckland) (Lab)]

I think Opposition Members may be making the mistake of judging this Government by their own standards. I wish to ask the Secretary of State this: after my constituents and many others have suffered from the economic disaster that was caused in part by dodgy covid contracts and VIP fast lanes, what will this Government do differently?

[Wes Streeting]

I am delighted to see my hon. Friend here representing Bishop Auckland. The people of his constituency will be struck by the fact that this afternoon the Conservative party has chosen to create a mountain out of a molehill about a former Health Secretary coming in to lend his advice and experience to a Labour Government. On covid corruption, my hon. Friend is absolutely right to be angry, as indeed the country is, too. That is why my right hon. Friend the Chancellor of the Exchequer has been very clear that, when it comes to cronyism and corruption in covid contracts, we want our money back and the covid corruption commissioner is coming to get it.