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 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 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.