Prioritising blood cancer: a personal reflection

Charlotte Moss

Despite being the UK’s fifth most common cancer and third biggest cancer killer, awareness and understanding of blood cancer amongst the general public and policymakers remain low. MHP Health’s Charlotte Moss explores the need to prioritise this disease.

Although blood cancer has a higher mortality rate than breast or prostate cancer, it often flies under the radar compared to the ‘big four’ cancers. Frequently at the vanguard of cancer research, blood cancer is usually deemed to be doing “well enough” by Government funders and is therefore not adequately prioritised.

In reality, people with blood cancer encounter many challenges along the patient pathway, from initial diagnosis and treatment to survivorship care. My own knowledge of blood cancer was almost non-existent until the end of my first year of university in The Hague. Hours after I handed in my final assignment, my parents FaceTimed me from Yorkshire to tell me that my dad had been diagnosed with leukaemia.

Despite my university-level research attempts (i.e. skimming Wikipedia), it wasn’t until I saw my dad texting a friend that he’d been diagnosed with a ‘rare, nasty form of leukaemia’ that I began to understand the severity of his diagnosis. My best friend from university had earlier reassured me that her mother was also diagnosed with leukaemia and, with regular check-ups and medicine, still managed to live a perfectly normal life years later. But my dad had been diagnosed with acute myeloid leukaemia (AML), unlike her mother’s chronic form. The disparity between types of leukaemia – notwithstanding the 100+ other forms of blood cancers – plays into the common misunderstanding of this disease. It is also exceptionally difficult to initiate, develop and implement the comprehensive policies needed to tackle unmet needs for a form of cancer in which people have such hugely varying experiences, even within the same broad diagnosis category.

My dad’s hospital room in Leeds, where he spent weeks at a time having chemotherapy and was unable to leave due to infection risk, had no WiFi and terrible phone signal. He was allowed visitors; my mum, sister and I visited every day. We couldn’t hold his hand or touch him but were still grateful to be allowed in his one-room world. I remember my dad going for an x-ray one day in a nearby department and excitedly telling me afterwards how free he felt when he was wheeled out of his room. The highlight was passing an open window and feeling a breeze – he didn’t have windows in his room, and it was the first time he’d felt nature in weeks.

Writing in the midst of the COVID-19 pandemic, I recognise that these 2016 memories are oddly evocative of the last year. However, in the case of blood cancer, the pandemic has caused many existing issues to be compounded, where they had previously been under-prioritised by policymakers and health systems alike.

For instance, already-poor diagnosis rates have been exacerbated by fewer GP check-ups, leading to further emergency diagnoses. This is particularly concerning for a community who have been campaigning for speedier diagnoses for years, and induces fears of a flood of late diagnoses when the pandemic begins to dissipate.

Findings from the UK Coronavirus Cancer Monitoring Project (UKCCMP) suggest that people with blood cancer may be more likely to catch COVID-19 than those with other cancer types. As blood cancers and disorders affect your immune system and can lower your ability to fight infection, it is sadly unsurprising that people with blood cancer also had a 57 per cent higher chance of severe COVID-19 compared with those diagnosed with solid tumours – particularly those with leukaemia or who had recently undergone chemotherapy.

Many blood cancers are rare and hidden within cancer registration statistics. This elusiveness adds to its lower priority in health policy, where a strong evidence base is required for change, and creates an extra obstacle to being considered as a single cohort in cancer planning. In a similar vein, common symptoms are often not recognised by either the public or GPs, especially as they may easily be mistaken for less worrisome illnesses like flu. Take the month of April 2019: there were nearly 200,000 cancer referrals, but only 1,825 were for blood cancer – despite it being the fifth most common cancer in the UK.

These low referral levels are also an indicator of the many people subsequently diagnosed in emergency situations. Blood Cancer UK’s Delays Expected report found that 28 per cent of people with blood cancer are diagnosed by emergency admission to hospital; the charity is calling for this to be reduced to 19 per cent, the average for all cancers, by 2028.

While forms of cancer can be misunderstood for a variety of reasons, coverage of blood cancer is especially concerning. One 2012 study found that, alongside brain tumours, blood cancers like leukaemia and lymphoma dominate cinema. As someone with pretty dark film tastes, part of me appreciates these attempts to portray cancer in some of its most horrifying forms. But this over-dramatisation overlooks real-life experiences of blood cancer, which tend to involve more than solely harrowing sickness in a hospital bed. One researcher from this study noted that “very often the ill person doesn’t get over the disease and his death is somehow useful to the plot’s outcome. This pattern is so strongly [standardised] that it persists in spite of real progress of treatments”.

It is evident that films such as Dying Young or My Sister’s Keeper do little to represent the reality for most people living with blood cancer. This may go some way to explaining why 84 per cent of people cannot name a single symptom of blood cancer: the general public are overexposed to a dramatised version of the disease that focusses on treatment or dying. I for one hadn’t even realised leukaemia was a form of cancer until my dad was diagnosed.

All this is to say that blood cancer gets a rough deal – in health policy, in public perception, in the cinema. Disproportional to its status as the fifth most common cancer, it is currently the third largest cause of cancer mortality in the UK, which reflects a need to prioritise earlier diagnosis and better treatments.

With the imminent establishment of the UK Health Security Agency (UKHSA), there is a clear opportunity to drive earlier cancer diagnoses through increasing public awareness of cancer symptoms. Special attention should be paid to diseases like blood cancer, whose symptoms can often go unrecognised. Similarly, further education of primary healthcare professionals – in terms of both recognising symptoms and ensuring that a safety net exists to refer possible blood cancer cases to secondary care – is key.

Aside from this, a robust evidence base remains vital to proving that the state of play in blood cancer requires urgent and significant improvement. To address the gulf in evidence between blood cancers and other cancers, further data should be collected and appropriately reported by the NHS. Such data will substantiate experiences we know anecdotally to be common in the blood cancer community, and allow targeted policies to be created that enable earlier diagnosis and better treatments for the disease.

Finally, any policy or campaign work developed by governmental or NHS decision-makers should seek the input of patient groups to ensure any outputs are clear, sensitive, and genuinely meet the needs of people living with blood cancer.

Without specific action focussed on blood cancer as we emerge from the pandemic, its compounded effects could cause damage to the community for many years to come.