Brain Tumours

Siobhain McDonagh Excerpts

1st reading
Wednesday 28th February 2024 Commons Chamber

Motion for leave to bring in a Bill (Standing Order No. 23)2.55 pm

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

I beg to move,

That leave be given to bring in a Bill to set a target for the number of glioblastoma patients who take part in clinical trials each year; to require training for medical oncologists to include training relating to brain cancers; to provide that any drug that has been licensed for use on tumours must be trialled on people with brain tumours; to make provision in relation to neuro-oncology multidisciplinary teams in the NHS, including a requirement that each such team must include a medical oncologist; to require manufacturers of drugs licensed to treat tumours to make those drugs available in specified circumstances for clinical trials relating to brain tumours; to make provision about the application of funding caps on funding for multi-drug treatments for glioblastoma brain tumours; to make provision about the processes for funding of drugs intended for the treatment of glioblastoma; to make provision about the management of drug trial data, for the purpose of increasing the quality of data relating to glioblastoma patients; to make provision about reviewing the allocation of existing funding for brain tumour research by the National Institute for Health and Care Research; to make provision about the direct referral of patients by optometrists to accident and emergency departments for the purpose of diagnosing brain tumours; and for connected purposes.

The reason I am speaking again about this terrible disease is a personal one. It is why this campaign will always feel different from the other campaigns I take on. On 24 June 2023, I lost my wonderful sister Margaret to a glioblastoma brain tumour. As soon as Margaret received her diagnosis, we found out just how bad the treatment was, how the life expectancy was nine months and how there had not been a new treatment on the NHS for 30 years. We found out that families in the UK were left to crowdfund and sell their houses to fund private treatment, and that they would have to take their very sick family member on to a plane and fly thousands of miles to access healthcare in Germany or the United States. That is why Margaret started her final campaign: to find a cure for glioblastoma brain tumours. When Margaret passed away on 24 June, it was left to me to take on that battle. Her mission is now my mission. The Government have left the disease in the “too difficult” pile for too long, and I am here to put finding a cure back on the Government’s agenda.

The second reason I am making this speech is above us in the viewing Gallery: I am incredibly grateful that a number of patients’ families have come to the House to hear the speech, and their support is a reminder that 3,200 people are diagnosed with a glioblastoma brain tumour every year. It is not just Margaret who was forced to fly thousands of miles to access the treatment that should have been provided on the NHS, but families up and down the country who are being failed and who deserve better. Having cared for someone with a brain tumour, I know how bad things are, and I know that if we try something different, we can give people diagnosed with this deadly disease some hope. This is my something different.

No. 1 is the pharmaceutical industry. Dr Paul Mulholland is Europe’s leading medical oncologist in glioblastoma. He believes that we are on the cusp of a cure and he would like to run clinical trials so that he can turn that belief into a reality, but the pharmaceutical industry has refused to donate the drugs he needs for those trials to take place. That is because glioblastoma is a very small market for those companies. With only 3,200 people diagnosed each year, the investment is just not profitable —there is not much money in it, and the companies are not interested. That is why, as policymakers, it is our job either to encourage or to force the pharmaceutical companies to provide the drugs for these trials.

I will give just one example. In October, I met Moderna to ask if it could donate medicines for a clinical trial of 10 patients. I had hoped that it would give clinical access to its mRNA pipeline to help find a cure, but it refused. This company with annual sales of $4 billion refused to donate drugs for 10 people at a maximum cost of half a million pounds. These drugs could save thousands of lives each year, so Moderna’s refusal is shameful.

The House will be interested to hear that Moderna has published an environmental, social and governance statement on its website that says it has

“a responsibility to the multitude of patients our technology could help, regardless of whether they have a disease shared by millions, or one that is unique to them alone.”

The statement says that Moderna

“understand what our stakeholders expect from us as a sustainable responsible business and leader in mRNA medicines.”

Those words are clearly meaningless.

I do not mean to sound pessimistic, because some companies have been very supportive—I have had wonderful conversations with Roche—but where companies such as Moderna have the funds and the medicines but lack the will to find a cure for brain tumours, I think it is the Government’s duty to step in and legislate to ensure that they do.

The second difference is about regulation. We need to ensure that our regulators incentivise the pharmaceutical industry and clinicians to do as many clinical trials as possible. Right now, the pharmaceutical industry sees the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence as a barrier, as a reason not to do clinical trials in the UK. That needs to change. For starters, when a pharmaceutical company is trialling a drug for glioblastoma and another disease such as melanoma, the MHRA should allow it to submit its data separately, so that glioblastoma patients’ results do not adversely affect the application.

Funding treatments as a package has been a major impediment to the industry. We can solve this issue if NICE funds each drug used in the treatment of glioblastoma separately. We will make progress if we make those changes, but we should not stop there. We need a whole host of policy changes if we want to make a change. If we carry on with the same old processes, we will get the same old results, which in the case of brain tumour research is failure. We also need a target of getting 200 glioblastoma patients each year into clinical trials on drugs that have the potential to change the course of the disease.

We need the NHS to ensure that every neuro-oncology multidisciplinary team has a medical oncologist as a core member, so that brain tumour patients are not left in a corner of the ward because there is nobody to fight for them. The NHS should make it easier for optometrists to directly refer patients straight to A&E for a scan without going through their GP.

On Monday I met the Anticancer Fund, which is based in Brussels, and I think I have discovered the one benefit of Brexit. Brexit means that the NHS medicines repurposing programme has been able to identify drugs that were initially purposed to cure another cancer, and that is exactly what we need to tackle brain tumours.

The NHS should require that every doctor training to be a medical oncologist goes through a mandatory course on brain tumours, which takes me to my final recommendation. In 2018, after Tessa Jowell sadly passed away from glioblastoma, £40 million of Government funding was promised to fund research into brain tumours. As of January 2024, just £15 million of that £40 million had been awarded. That is a real failure of government. The MHRA should be shouting loud and proud about how much money is available for investment in brain tumour treatments, but it does not and I cannot understand why.

For as long as there is no progress and I am a Member, I will come back to the House at every opportunity. I came into politics to fight for people who are not heard, and there are few people heard less than those who suffer from glioblastoma.

Question put and agreed to.

Ordered,

That Dame Siobhain McDonagh, Will Quince, George Freeman, Tracey Crouch, Steve Brine, Helen Hayes, Paul Blomfield, Sarah Owen, Dame Meg Hillier, Daisy Cooper and Wes Streeting present the Bill.

Dame Siobhain McDonagh accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 19 April, and to be printed (Bill 169).

[Mr Deputy Speaker (Mr Nigel Evans)]

Your campaign is one of Margaret’s legacies. Thank you, Siobhain.