Childhood Cancers: Research

David Mundell Excerpts

Monday 7th December 2020 Westminster Hall

[David Mundell (in the Chair)]

I remind hon. Members that there have been some changes to normal practice to support the new call list system and to ensure that social distancing can be respected. Members should sanitise their microphones using the cleaning materials provided before they use them, and dispose of that material as they leave the room. Members are also asked to respect the one-way system around the room, and to exit by the door on the left. Members should speak only from the horseshoe, and I therefore ask Members currently at the horseshoe to vacate a seat for the Members at the back who want to speak in the debate—once they have spoken, obviously. I call on Tonia Antoniazzi to move the motion.

[Tonia Antoniazzi (Gower) (Lab)]

I beg to move,

That this House has considered e-petition 300027, relating to research into childhood cancers.

It is a pleasure to serve under your chairship, Mr Mundell, and an honour to lead for the Petitions Committee in this debate. I welcome the large number of colleagues who have put in to speak today, and pay tribute to those who are unable to do so due to the parliamentary covid restrictions. As chair of the all-party parliamentary group on cancer, I really wanted to lead on this petition, as it is one that has touched many parliamentarians and their constituents. Indeed, I was approached by the hon. Member for Calder Valley (Craig Whittaker), who is unable to participate today, who asked me to pay tribute to his constituents Julia and Darren, who lost their beautiful daughter Fifi to childhood cancer. I put on record my heartfelt thanks to the petitioner, Fiona Govan, who lost her grandson Logan to a type of brain cancer called diffuse intrinsic pontine glioma, and to Amanda Mifsud from the charity Abbie’s Army, which was set up following the death of six-year-old Abbie from DIPG in 2011.

Children’s cancers represent under 2% of all UK cancers. Despite this low number, that still means that over 500 children die from cancer each year. It is the most common cause of death in children. The great news is that since the 1970s, mortality has decreased by around 70%, and even with the debilitating side effects of many treatments, that is testament to the achievements of research in saving our children. One caveat to those figures is the massive variation in survival rates by cancer type: 99% survival for retinoblastoma, contrasting with 0% for DIPG. Many forms of cancer affect children, but after speaking to Fiona and Amanda, I am going to concentrate on the disease that took Abbie, Logan and so many others.

DIPG is a highly malignant brain tumour located in the pons, or pontine, area of the brain stem, almost exclusively affecting children. DIPG tumours are one of the most aggressive forms of cancer, and the prognosis for children diagnosed with it is terminal—it has a 0% survival rate. What also struck me was that while there have been huge leaps in the treatment of many other cancers and diseases, nothing can be done to treat DIPG. Neil Armstrong lost his daughter to DIPG in 1962, and since that time there has been no development in treatments, let alone a cure. Thankfully, childhood cancers are rare, but that also means that they do not get the research funding that other cancers attract, and are often seen as too difficult to tackle. As Dr David Walker wrote in The Telegraph in February 2016:

“So-called ‘rare’ cancers are collectively as common as the ‘common’ ones. But the perception that research should be funded according to incidence means that individual rare cancers are doomed forever to receive a fraction of the money.”

As such, the equivalent of a classroom full of children die from DIPG in the UK year after year, while there are no meaningful advances in treatment options and no current UK trials.

What does the petition ask of the Government? Less than 21% of research funding on childhood cancers is provided by the Department of Health and Social Care, and there is little transparency on where the funding goes. To change that, the petitioners want the National Institute for Health Research classification system to include specific cancer types and age data. They also ask for a commitment from the Government on ongoing funding obligations and for a set percentage of other funding to be ring-fenced for research on childhood cancers. We also need to look at reprioritising funding, to make sure that money is being used strategically for actual research—and that it is not spent on infrastructure, as happens at the moment.

We need to take full advantage of the highly accomplished researchers we have in the UK, such as Professor Chris Jones, but they need funding to answer the key scientific questions, such as, how can we do better and how can we help these children? That has been done in other countries. The Australian Government awarded about $9 million in 2019 and 2020 for childhood cancer research, and there have been extraordinary advances in outcomes on some cancers. If we can get that funding, the UK can become a centre of excellence in the field.

Yesterday, Fiona sent me an email with a message from one of the families, who are going through an incredibly hard time with their son Joshua. Josh’s mum, Michelle Beresford-Smart, writes:

“Josh is still with us, but since August has been bedridden and no longer able to communicate. Completely paralysed by the end of September and blind in October and no longer able to swallow. About 10 days ago his breathing changed and this week he was put on a syringe driver. No life, just waiting for the inevitable. Horrendous. Josh… was diagnosed in August 2017 with a tremor in his right hand. The GP told us we were being paranoid! Just a trapped nerve!”

Nine days after the GP appointment, they were in Great Ormond Street Hospital. Michelle writes:

“My son was 15 at diagnosis. He is now 18. But, as you know, there aren’t any options here in the UK. He did radiation and chemo and then we were lucky enough to get him on the ONC201 trial in New York. We last visited in February 2020, then COVID struck and options were taken away.”

These incredible women told me their stories about making a change for other families and their children who will be affected with poise and passion, and today I am speaking up on behalf of all the families who deal with the tragedy of losing a child. I ask the Government to do the right thing and fund research on rare cancers to give future generations a fighting chance.

The majority of fundraising is done by parents and family-led charities. Earlier today, I heard that Alison Caplan, a constituent of the hon. Member for East Renfrewshire (Kirsten Oswald), lost her son Daniel, aged 17, to DIPG last week. He was a bright young lad who had his whole future ahead of him. His funeral is this Friday and the family hope to help other children who are diagnosed with cancer, especially DIPG.

These are people who have lost a child to a horrendous disease, but still they continue to fight for better outcomes for future generations. They deserve to have their voice heard and I am proud to have been able to speak for them today.

[David Mundell (in the Chair)]

To ensure that everyone can make a meaningful contribution, I am imposing a four-minute time limit.

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[Derek Thomas (St Ives) (Con)]

I commend the hon. Member for Gower (Tonia Antoniazzi) for opening this debate, and I also commend Fiona Govan for her incredible work to secure the signatures needed to trigger this debate. I know that Fiona would say that it is the least she could do following the loss of her grandson, but she, along with many other families suffering the same trauma, expect us to do something. The Minister understands that, as I know her to be a caring and compassionate individual.

In Fiona’s case, as we have heard, her grandson Logan died of a DIPG, which is a childhood cancer that wipes out hope and brings to an end a life of promise and potential. DIPGs, as we have heard, are tumours that are highly aggressive and difficult to treat, found at the base of the brain. But Fiona and her family are not alone; we all have families in our constituencies who have lost children to brain cancers.

I have the great honour of chairing the all-party parliamentary group on brain tumours. The charity that supports this influential APPG was born out of the loss of a girl following a diagnosis of DIPG. I cannot pretend to know what a family goes through when they are told such terrible news, but I can share a little in the pain, having lost a son at just nine months old. An account of Fiona’s family’s story can be found on the Brain Tumour Research website, and it is really powerful reading, for those who have not read it already. It sets out precisely the journey, and the trials and the challenges, that they had to go through, as their son and grandson lost his life.

When a family is told that their child has a DIPG, they do not have to search far to learn that just 10% of children diagnosed with this type of brain tumour survive for up to two years following a diagnosis, and that only 2% survive for as long as five years, and we know that few of these children, if any, survive at all for longer than that. As we have heard, this prognosis has not improved.

The work of the APPG is extensive, but what is particularly relevant to this debate is a recent meeting with Midatech. Midatech is a British-based company, which in October announced

“‘encouraging’ headline results from a phase 1 study at the University of California… in patients with… (DIPG)”.

We were told that in a cohort of seven children with DIPG who took part in a clinical trial whereby a drug is delivered directly to the brain via a catheter, five survived beyond 12 months and three continue to be monitored.

As always, it is important that we carefully manage the expectations of families with very sick young ones. However, the purpose of this debate is not to present the problem, which is well documented, but to seek to identify what will unlock the solution. We are aware of 200 failed drug trials relating to DIPG. There are very few promising signs, which is where I turn to the Minister. Will she investigate why a British company is limited to running clinical trials in the US—in the case of Midatech, in California and New York? Will she work with the National Institute for Health Research to find a way of committing and ring-fencing funds directly for research into childhood cancers, as the petition demands? Will she work with the APPG and Midatech to navigate a way to set up clinical trials in the UK? It seems that the only option for many parents is to travel across the world, at enormous personal expense. I associate myself with the recommendations of my hon. Friend the Member for Winchester (Steve Brine), his work on the strategy and the need for absolute focus.

The APPG has been told repeatedly there is a lack of research and clinical trials in the area of brain cancer. That can only be properly addressed if we build the skills and expertise base, but that is very hard if the Government are not proactively promoting and funding such research. We start at a low base, but with the right focus, as we have all heard, there is an opportunity to provide the hope that these families so desperately need.

[David Mundell (in the Chair)]

I now call Kirsten Oswald, who should have been referenced on the call list as an SNP Member.

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[David Mundell (in the Chair)]

There are about 20 minutes for Mr Norris and the Minister, because I would like the hon. Member for Gower (Tonia Antoniazzi) to have a few minutes to respond to the debate.