Rare Cancers Bill

Monica Harding Excerpts

2nd reading
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.

Rare Cancers Bill

Monica Harding Excerpts

Report stage
Friday 11th July 2025 Commons Chamber

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

I once more thank the hon. Member for Edinburgh South West (Dr Arthur) for all he has done to bring the Bill forward. We, along with thousands of families throughout the UK, all owe him a huge debt. I am proud to have supported the Bill from the very beginning. I also pay tribute to the ongoing work of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), whose inspirational advocacy has set the example on these issues, particularly for new MPs like me.

I do not think I need take up much time restating why the Rare Cancers Bill matters; every hon. Member who sat alongside me in the Bill Committee knows that already, which is why we reported it to the House unamended. The Minister also knows, which is why the Government have repeatedly pledged their support, and organisations working with rare cancers know too. The Brain Tumour Charity describes this legislation as “a Bill of hope” and Pancreatic Cancer UK talks of its potential to transform survival for rare cancers. That potential sits with us today.

The Rare Cancers Bill takes concrete and common-sense steps to facilitate research into rare cancers, to improve the speed and quality of necessary clinical trials, and to help get orphan drugs—medicines often neglected because they target uncommon conditions—to those patients who so desperately need them. I urge the House to advance the Bill and ensure that its provisions become law as rapidly as possible. So much depends on getting this one right. To that end, I briefly remind the House what exactly is at stake today for families, including my own, throughout this country.

When I spoke on Second Reading, I told the story of Group Captain Pip Harding, my brother-in-law, who was diagnosed with an aggressive stage 4 glioblastoma in February 2024. His prognosis was such that he should not be here today. Pip is married with five children. He has served in the Royal Air Force in the Indo-Pacific, in Afghanistan and in Iraq. I am immensely proud of him, not least because of his battle against this devastating diagnosis.

Pip’s family, friends and those who loved him rallied around him. More than 600 of them set up a GoFundMe page to cover the cost of an experimental cancer treatment, oncothermia, which uses radio frequencies to target and treat malignant cancer cells. I am happier than I can say to be able to tell the House that Pip is alive and well, and that the tumour has shrunk from 7cm to less than 1 cm as a result of that treatment. For Pip’s loved ones, of course, that means the world—oncothermia is winning it for him. It means that there is more time for his family and more time for more treatments to come online to get his health back.

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

It is a matter of delight that the hon. Lady’s brother-in-law is still well and that the tumour has shrunk. But I should say to the House and all Members that that machine, which my late sister campaigned and raised funding for, is currently situated in a private hospital in London because it would get nowhere near an NHS hospital. That is the tragedy of the circumstances that we find ourselves in: our system is so restrictive that we cannot look for new innovations within our NHS.

--- Later in debate ---

[Monica Harding]

I thank the hon. Member for all her advocacy on the issue. She makes an important point, which was made previously: rare cancers are not rare for the victims and their families. That is why we need to bring such treatments into the NHS so that they are available for all, not just for those who set up GoFundMe pages that win tens of thousands of pounds.

Of glioblastoma, Pip said:

“This is a very sad disease of which the cause is…unknown and seems to randomly strike individuals. It would be just amazing if the policy to support these people was changed by this vote and I am personally so grateful to all of you who are so kindly driving this forward.”

His successful story and the challenge of accessing oncothermia underscore equally the importance of the legislation. In sum, innovative new treatments for rare cancers must be brought to patients as fast as possible.

My constituents in Esher and Walton, particularly those whose lives have been scarred by cancer, also feel that very deeply. In the last few days, many have written to me about the legislation to share why its success matters so much to them. One told me of his very young son, who was diagnosed last year with a rare brain tumour that has turned their lives upside down. One told me about his own battle with brain cancer, the excellent care that he has received in the NHS and the fundamentally limited treatment options available to him based on the current state of research and drug development and marketing. Another constituent whose daughter has glioblastoma offered me an important reminder about our work today when they said that

“every important issue or gain has to be fought over fiercely before anything is achieved.”

They are absolutely right.

I will take this opportunity to highlight some other people who have fought and for whom the Bill is vital. My constituent Kate Ford has been campaigning for the lobular moonshot project since she was diagnosed with lobular breast cancer two years. We have already heard how research for that disease has been entirely insufficient and how necessary that project is right now. I am proud to be one of hundreds of MPs on both sides of the House calling on the Government to support it, as we have heard. Like the hon. Members for Farnham and Bordon (Gregory Stafford) and for Bishop Auckland (Sam Rushworth), I was deeply saddened to hear of the death of Dr Susan Michaelis, the project’s founder, this week. My constituent Kate is now carrying forward Susan’s torch and will be at the meeting with the Secretary of State for Health and Social Care on Monday. I call on the Government to answer Susan’s call and finally back the project.

While I have the Government’s attention, I will raise one more important issue. Pip was an RAF helicopter pilot. There are a growing number of veterans who served as aircrew on military helicopters and were exposed to exhaust fumes during their time in the forces, and who have now been diagnosed with rare cancers, including blood cancers. That issue has been raised in recent months by hon. Members on both sides of the House, including my hon. Friend the Member for North Shropshire (Helen Morgan) and the hon. Member for Truro and Falmouth (Jayne Kirkham).

I understand that the Ministry of Defence is currently working to test engine exhaust emissions and to develop a clearer understanding of the health challenges facing veterans, including rare cancers related to their service. Those are welcome steps, but they are insufficient. Although I am conscious that the MOD does not unequivocally recognise the link between exhaust fumes and such cancers, and that I am not addressing the Minister for Veterans, I urge the Minister to do all he can to accelerate the collation of veterans’ health data, which is an essential project that could otherwise drag on, and to support the development of cancer screening programmes for veterans who may be at risk due to their record of serving this country.

Cancer can touch any life. It can come unexpectedly, and it can come cruelly. The Bill offers hope to all those whose cancer has been neglected and disregarded in drug research and clinical trials, but has upended their entire life. It offers us the chance to say to all those people, “You are not alone and you are not forgotten.”

Winning the battle against rare cancers requires us to advance on many fronts at once, so I gently push the Minister, even as he supports the Bill becoming law, to consider the vital calls from the hon. Member for Mitcham and Morden to improve outcomes for brain cancer patients, which have shown too little improvement for too long. Will the Minister commit to a target of getting 200 glioblastoma patients on to promising new clinical trials every year? Will he engage with the private sector to urge pharmaceutical companies to more rapidly make their drugs available for those trials? Will he consider mandating training in brain cancer specific oncology for all doctors seeking to become medical oncologists? Will he also ensure that all neuro-oncology multidisciplinary teams have as a core member a medical oncologist able to contribute their expertise to a patient’s care?

Finally, even as we advance the Bill today, we must not lose sight of the need to do far better by patients with cancer, rare or not. One of the most reassuring aspects of this Bill has been its cross-party support, but while I am here, I want to ask the Minister whether he will listen to Liberal Democrat calls and turn the current target of starting treatment within 62 days of an urgent cancer referral into an iron-clad guarantee? Will he also consider our call to expand the capacity of the Medicines and Healthcare products Regulatory Agency as another way of ensuring that innovative drugs are not snarled up in red tape and that they reach patients faster?

There is much work left to do, but today’s legislation is a real step in the right direction. I take note of the humbleness of the hon. Member for Edinburgh South West, so I will speak about the reach of the Bill and his work. Good politics changes lives and the best politics saves lives. All of us here in this place are committed to do that. I am proud to support this Bill, and I urge Members to vote for all those lives that the Bill could help save and for those families whose lives it will change.