Turning a blind eye on children with cancer is not an option: a father’s personal perspective

Admittedly, movies with children suffering from cancer are hard to watch, so I used to simply change the channel.

This is an easy way out of a very upsetting thought of a child fighting for their life and all the drama and pain of everyone affected. A subject that movie producers can easily use to stir people’s emotions without the need for big budgets or special effects. Just the image of a hairless and frail child that cannot really understand why bad things are happening to them and wants desperately to go back to playing with friends, being able to run, and spending time at home with family rather than in hospital.

My aversion to the image of children with cancer was dramatically altered when my daughter, Arianna, was diagnosed with bone cancer (osteosarcoma) at the age of 5.

Maybe the actual reason that I was choosing not to watch such movies was my work. As an academic at the Nuffield Department of Primary Care Health Sciences, University of Oxford, I conduct research that provides economic evidence on what treatments should be provided in the NHS. Most cancers in children are rare, and the cost to the NHS to provide treatments to them can be high. So, watching such a movie would give me a personal story, a child’s face, that could have possibly been impacted by my research. And thus, I chose not to have this image in my head.

My initial response to the news of my daughter’s diagnosis was to reach for the metaphorical remote control, failing to believe that this was actually happening to us. However, I realised that I had no option but to be strong for Arianna and the rest of the family, which was expanding as my wife was expecting our third child imminently, so I knew I had to pull myself together.

Instinctively, I contacted an oncologist and internationally renowned expert in the type of cancer my daughter had, Professor Bass Hassan, who I was collaborating with in Oxford. A month before Arianna’s diagnosis, after an online meeting with him, my wife asked me who he was and I replied “If you’re a parent, he’s the person you don’t want to get to know”.

Of course, I was referring to his professional capacity because as a person, he is as amazing, impressive, and giving as are all the doctors, nurses, physiotherapists, play therapists, dieticians, charity workers, medical students (and more) that I came across during Arianna’s year-long treatment in the NHS.

Experiencing the NHS at its best

Her treatment in the NHS was a streamlined clinical pathway that started with Arianna’s brilliant GP who sent us straight to A&E when Arianna presented with symptoms from an apparently low-impact fall on the way to school. Our experience of bone sarcoma care was that of a well-coordinated and person-centred service of high quality and compassionate care.

Everything that my academic work is aiming to achieve in healthcare systems materialised in the care for my daughter. A service that made us feel so lucky that we had access to unrivalled NHS care.

However, I was shocked when I started looking into clinical guidelines and scientific literature and discovered that little progress had been made in the medical treatment of osteosarcoma in the last 40 or more years.

A very intensive and long course of platinum-based chemotherapy that has severe adverse effects has been used since the 80s to treat bone cancer. I couldn’t understand why the survival rate of children with bone cancer, including Arianna, was pretty much the same since my childhood, despite all advances in medical technology and the proportionally large public spend in cancer innovation. Even treatments to counteract the adverse effects of the chemotherapy were limited.

When Arianna was sleeping off the adverse effects of her chemotherapy and between the endless beeping in Kamran’s Ward – the dedicated Oncology ward at the Children’s Hospital in Oxford - where we were virtually living for a year, I was working on a scientific paper with Bass about a genetic test that evidently prevents adverse effects of chemotherapy and could potentially save the NHS money.

It was possibly the first time that the data in my analysis were so closely related to my daily life, which was full with Arianna’s nausea, diarrhoea, neutropenia, fatigue, loss of appetite, nose bleeds, infections, permanent hearing loss, and alarming loss of weight. It was the NHS staff and charity workers that guided and supported me through these horrible experiences as well as the kindness and mutual understanding of the other parents in the ward, who were moral supporters and informal therapists.

But above all, it was the strength and bravery of Arianna and the other kids in the ward and their occasional cheeky smiles that kept me going. Something that makes me wonder why there has been little development in treatment for their cancers and what can be done to change that.

So, using my academic knowledge and personal experience, I tried to get a better understanding of the issues surrounding these questions and hopefully, contribute some useful views in the future of treating bone cancer and other rare cancers that seem to have received less attention than more prevalent cancers.

I need to clarify that I am not saying that there is such thing as “better” cancer but I do believe that there are disparities in the public attention, research funding and efforts, and “market attractiveness” for manufacturers between different types of cancers, and in some cases even between rare cancers.

It was something that I felt deeply during Arianna’s treatment, when I envied the availability of some promising and cutting-edge therapies, with absent or mild adverse effects, in some cancers. Children with bone, brain, and some other cancers seemed to be less privileged in that regard as they were spending most of their (remaining) life in the ward.

Why has treatment stood still for so long?

Some of these disparities may be inherited due to the complexity of some types of cancer. Bass explained that “the treatment of sarcoma is more problematic than other cancers because there are so many different types of sarcoma at the genetic level, each genomic change in the tumours signals a different potential treatment strategy. This means the economics for drug development become more stark: the investment needed to develop a drug would be disproportionate to the number lives that might be improved”.

While it’s hard to fault the logic of investment vs lives improved being disproportionate, it’s because of this cold logic that, in my view, this is indeed an additional reason for the scientific community, large funders and public authorities to focus their efforts in understanding the pathology of such “complex” tumours and create research networks across scientific labs and databases to build shared knowledge on how to develop approaches that lead to better responses in these tumours.

Also, charities may play a role towards that direction so, I asked Zoe Davison, Head of Research, Information and Support at the Bone Cancer Research Trust, about their contribution. She said: “The diagnosis, treatment, and management of bone sarcomas is vital to ensuring that more patients survive and have a better quality of life beyond primary bone cancer. To help further our understanding of the interplay between the immune system and osteosarcoma cells, and how we can exploit this to develop new treatments, this year, we have provided funding of £1 million to enable the continuation and expansion of ICONIC – a national clinical trial for osteosarcoma patients. By adopting a collaborative approach to research, we aim to develop a new clinical trial to carry new therapies forward, bringing us one step closer towards a cure for bone cancer.”

I asked Arianna’s oncologist about the existing treatments in osteosarcoma, in case I had missed something. Dr Shaun Wilson, with whom I had collaborated on an unsuccessful proposal to get funding for research on sarcoma a year before Arianna’s diagnosis, said that “Sadly, the treatment of osteosarcoma has changed very little form the early 1980’s. The use of toxic drugs, such as doxorubicin and cisplatin, has changed the outcome of osteosarcoma, but at price to the patient and their family. The lack of innovative and effective novel agents is frustrating. I can only hope in the post-COVID era, the regulatory changes that allowed for the rapid development of novel vaccines, will support the development and adoption of novel agents”.

My thoughts turned straight to the barriers in the healthcare system for innovation and how we can overcome them, as this is an area of my scientific work. I therefore, asked Dr Matthew Prime, Head of Value Delivery & Evidence Generation for Roche Information Solutions, and a former NHS doctor, who I work with as part of the Oxford Precision Oncology for Sarcoma (OX-POS) study, to provide me with his views taking on board the manufacturer’s perspective.

He said, “The main challenge in healthcare is not the invention of new technologies, ideas, or processes, but rather the adoption and implementation of such innovations at scale, which can drive system transformation. Take the OxPOS study, for example, here we are trying to understand the barriers to the implementation of a precision oncology service - we have the technologies but how do we best integrate all relevant and clinical data (i.e. patient history) and diagnostic data (i.e. imaging, genomics, pathology) and use this data to power clinical decision support tools (i.e. guidelines apps, publication searching apps, clinical trial matching apps, and therapy matching apps) to enable clinical decision makers to make the best decisions for patients like Arianna.”

From individual stories to collective responsibility

The barriers seemed so familiar to me as I had come across them previously in my academic work, but the immediate positive thought was that there is a bulk of scientific literature and health policy initiatives pointing on how to overcome them. When we fail altogether to mirror improvements in the survival rates of other cancers for decades, the message is clear. We need to join forces and work together to do better. As the scientific literature suggests, public-private partnerships may be the way forward to overcome existing barriers and enable technological innovation, much needed in rare cancers.

I wondered then, what is the next generation of treatment in osteosarcoma. What should the research effort be focusing upon. Bass explained to me again that “there are a new generation of agent agnostic to specific tumour therapies, these are immunotherapies. They range from vaccines, immune cells that are engineered to destroy and reject tumours and new drugs that activate our own immune systems to destroy tumours. Many of these are in the clinic and many researchers are widening the application to rare cancers such as sarcoma”

When I asked Zoe if there enough commitment to do more research on these innovative treatments and have them in the NHS soon, she replied “Funding to support Ad-ICONIC has been awarded as part of our new ten-year research strategy, Accelerating Research to Help More Patients Survive and Thrive, which sets out the next steps for our pioneering studies in what is an exciting time for new medicine and technologies. Over this strategic period, we will commit £10 million to life-saving research that will help develop kinder, more effective treatments for patients like Arianna.”

This was very reassuring to me as it seemed that most stakeholders were aligned in their views and actions on how to improve treatment for bone cancer. And that included my views through my experience with Arianna’s cancer, my academic expertise, and my involvement in charity work. However, all these innovations would be less effective if we delayed diagnosing aggressive and complex cancers such as osteosarcoma.

GPs trained in identifying symptoms of rare cancers, advanced diagnostic technologies, and integrated clinical pathways informed by precision oncology are prerequisites in maximising the value-for-money of these innovations. The thought of a whole system approach, supported by public-private agreements to bring the best possible innovation for something as complex as a bone tumour warmed my heart.

After the completion of Arianna’s treatment, in a personal chat, Bass recommended that I watch The Fault in our Stars, a movie about a teenager having osteosarcoma. It was emotionally hard to watch but cathartic at the same time. While I was watching it, my thoughts were focused on how we can deal better with bone cancer. I had lived the ‘drama’ myself, with Arianna’s cancer, and had the face of Arianna and all the other children in Kamran’s Ward in my head, that all their stories could have been made into movies.

So, instead of sadness, my emotions were dominated by hope. Hope that we can provide better medical care to the next cohort of children who will be hospitalised in Kamran’s ward, and any other such ward. If we do that for a population as vulnerable as children, the ripple effect of this collective achievement will reach other age groups and types of rare cancers, and not just in our country but across the globe. A butterfly effect caused by children in need of better care. Because these children exist in real life, not just in movies, and their needs do not go away simply by turning a blind eye on them. Leaving them behind on our cancer journey would be a self-fulfilling tragedy.

It is, I believe, the responsibility of the whole cancer community, from patients with common cancers to cancer specific charities, to dig deep and offer a helping hand rather than a blind eye.