Rare Cancers Bill

Monica Harding Excerpts

Friday 14th March 2025 Commons Chamber

[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.

[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.