Childhood Cancer Outcomes

Debate between Caroline Dinenage and John Lamont

Tuesday 26th April 2022 Commons Chamber

[Dame Caroline Dinenage]

The right hon. Gentleman is absolutely right. I shall talk about research in a moment, but childhood cancer research is currently the Cinderella of cancer research and we need to do much more to address that.

Once a child has been diagnosed, the gruelling process of treating the cancer begins. Between 1997 and 2018, only 18 new drugs were approved for 22 paediatric oncology indications, and they were generally for quite specific or relapse cases. That means many children are often given the same treatments as adults—incredibly aggressive chemotherapies and radiotherapies—and in many cases children’s treatments have not changed for decades. Even if the cancer is beaten, the child’s body is often so ravaged by the treatment as to leave long-term impacts from which they may never recover.

[John Lamont (Berwickshire, Roxburgh and Selkirk) (Con)]

My hon. Friend is speaking remarkably passionately about this important issue, about which many of my constituents have been in touch with me. They include Julie and her son George, and Leah and her son Toby—both children are suffering and living with cancer. Does my hon. Friend agree that much more needs to be done when children finish the course of treatment to support not only the child but the family, in terms of their recovery from the physical and emotional impact of the treatment?

[Dame Caroline Dinenage]

My hon. Friend makes an excellent point: there is such a huge impact on families who support a child through cancer and we need to look at how we support them in the round.

I have heard from parents of children who are known as cancer free—so they are probably counted as a success statistically—yet some of them are still in hospital because of the disastrous impact of the treatment itself. Very many survivors are left with long-term hormone deficiencies, some of which are life threatening. Survivors can also experience neurological, behavioural, cognitive and visual impairment. The St Jude Hospital in the United States takes an annual survey of former patients. By the age of 50, they all—100% of them—have life-altering health issues, from fertility issues to severe neuro-disability. I would love to know whether similar surveys happen here and whether the conclusions are the same.

As other Members have said, it is vital to find better treatments specifically for children, which means better research is vital. Children’s cancer is fundamentally different from adult cancer in that so much of it is developmental rather than environmental. The good news is that progress is within our reach—there is so much potential in immunotherapy and genomics—and the even better news is that the UK has a fantastic research community and the most comprehensive database of childhood cancer genomes anywhere in the world. The bad news is that paediatric oncology research is the absolute backwater of cancer sciences. It does not have the focus, the money, the public relations or the prestige of other forms of research. Until there is a concerted effort to change that, children like Sophie will be failed.

I expect the Minister to tell me today that great progress has been made on the cancer survival rate among children. Seventy years ago, children simply did not recover or survive a cancer diagnosis; now around 80% do. But the figures belie the fact that for many cancers, including the rhabdomyosarcoma that killed Sophie, the survival rate is as low as 20%. For another cancer, DIPG—diffuse intrinsic pontine glioma, which is a form of brain tumour—the survival rate is 0%. It is literally a death sentence. Can you imagine being that child? Can you imagine being that parent?

There is no doubt that research investment drives survival rates. Since 1960, the survival rate for childhood leukaemia has improved from 10% to 80%. By contrast, only two multinational clinical trials have ever taken place for rhabdomyosarcoma. With only 60 cases diagnosed in the UK per year, there is very little scientific evidence or appetite to develop and complete clinical trials. It is of no interest to big pharma. So we need to look much more imaginatively at how the National Institute for Health and Care Research can encourage more research in such types of cancer.

We also need to look at how new treatments can be brought forward much more quickly. I met Kevin and Karen, who lost their son Christopher just days before his sixth birthday from an aggressive form of brain tumour. They raised concerns about the EU paediatric regulations, which they feel are outdated and do not reflect the latest technological advances. Now that we have left the EU, we have the opportunity to produce new legislation that will incentivise world-leading pharmaceutical products, especially for children, and we need to take that opportunity.

Today, I ask the Minister to start a children’s cancer mission. We have seen from the incredible work on brain cancer inspired by our much-loved former colleague Tessa Jowell how much progress can be made when we are galvanised to bring together the best of Governments, charities, research, academics, medical and science into centres of excellence.