Leukaemia and other blood cancer treatments are a postcode lottery in the UK – this has to change

Blood cancers are the fifth most common cancer type in the UK, impacting hundreds of thousands of people, and are the third biggest cause of cancer deaths. For too long, government cancer plans have ignored the unique needs of patients with blood cancer. Cancers which, unlike solid tumours, cannot be treated surgically.

60,000 people in the UK are currently affected by leukaemia alone, a cancer that progresses quickly and aggressively. Depending on their type of leukaemia and where they live in the UK, patients face unique challenges in treatment and care, leading to differing outcomes. This World Cancer Day, Leukaemia UK is calling on the government to recognise the challenges faced by people with leukaemia and other blood cancers in the upcoming national cancer strategy, and to take urgent action to stop them devastating lives.

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Many people with the signs and symptoms of leukaemia struggle to get in front of a GP, which contributes to why 37% of leukaemia cases are diagnosed in emergency settings such as A&E; far more than the average of 21% for all cancers. Those who do get to see a GP then face delays in being referred for a diagnostic full blood count test due to lack of capacity in these services.

Additionally, leukaemia and other blood cancers circulate the entire body, so they cannot be staged in the way that solid tumours are, meaning they are left out of government early diagnosis targets and strategies for cancers.

These factors significantly impact the effectiveness of treatment, prognosis and survival rates. Half of the people currently diagnosed with leukaemia in the UK won’t survive for more than five years. For those diagnosed with acute myeloid leukaemia (AML), a particularly aggressive form of the disease, the outlook is even bleaker. If no action is taken, nearly 80% of those diagnosed with AML today will not survive until the end of this parliament. This is simply unacceptable, especially in the context of higher five-year survival rates in European countries and the progress that has been seen in other common cancers.

As it is not a solid cancer type that can be removed through surgery, people with leukaemia rely on innovative treatments. However, depending on where patients are based in the UK, the treatment options available to them can vary dramatically.

For example, CAR-T therapy is a new type of treatment that has been proven effective against certain leukaemia types, extending survival rates. The treatment uses a patient’s own immune cells, modified in a lab to recognise and kill cancer cells once they have been returned to the bloodstream.

However, many people who would benefit from this treatment miss out because it is not available everywhere in the UK. This leads to an unfair postcode lottery of care.

Without ensuring that there is sufficient capacity in the NHS workforce to deliver these new treatments, people with leukaemia that would benefit from CAR-T therapy could die before they get the chance.

In addition, there is regional inequity when it comes to access to clinical trials, as they are not offered equally across the UK. Clinical trials often offer novel, innovative treatments for patients, further accelerating unequal access to potentially life-saving care.

People diagnosed with leukaemia also face a significant financial burden following diagnosis, with the median financial impact on a blood cancer patient standing at £181 per month, compared with £120 for a patient with breast cancer or £52 for prostate cancer. This includes travel expenses to and from hospital, food costs associated with specialist diets and additional use of home heating to keep warm, due to treatment side effects.

Additionally, nearly 65% of patients are forced to reduce working hours or stop work completely following diagnosis, as the often-harsh treatment takes its toll. This is partly because most acute leukaemia patients have to immediately start chemotherapy, whereas solid cancers can usually start with milder treatments, if caught early.

It is vital that the government takes the necessary steps to ensure that the right infrastructure and workforce expertise is available in the NHS right across the UK. They must foster a responsive and fair healthcare system, so that access to the best care is never determined by where people live.

This World Cancer Day, Leukaemia UK is calling on the government to ensure that the upcoming national cancer strategy commits to driving the improvements that people with leukaemia desperately need. This includes a national clinical audit and review of services for leukaemia, to understand existing gaps in care. This will help to ensure people are diagnosed early enough to benefit from lifesaving treatments, and that these treatments are available to anyone who needs them, no matter their location or circumstance.

We are ready to work with the government and everyone with the power to drive change to make this happen, working towards a future where leukaemia and other blood cancers no longer devastate lives.

Leukaemia doesn’t discriminate and neither should our response.

Fiona Hazell is the CEO of Leukaemia UK.

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