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“Knowledge is power” – how knowledge of AML is shaping the patient experience

written by

Leukaemia Care, Charity

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‘Know AML’ is a global initiative that aims to raise awareness and education of acute myeloid leukaemia (AML) to patients, carers, families, healthcare professionals and the general public. Knowledge is power and by empowering each and every one of these groups the outlook for AML patients can be significantly improved. Here’s how.

You may be aware of our Spot Leukaemia campaign for blood cancer awareness month. The basis of our campaign is this: currently 53% of AML patients are diagnosed by emergency presentation and statistics show that patients diagnosed by emergency presentation have significantly reduced one year survival.

Many people are not aware that leukaemia is cancer of the blood. A common misconception is that leukaemia only affects children, when in fact the average age of AML diagnosis is between 65 and 70 years old. Additionally, the symptoms are often attributed to lifestyle factors such as ageing and not to cancer.

These factors may all be contributing to the high levels of emergency diagnosis, as patients delay in visiting their GP when they experience symptoms. By improving knowledge within the public of what AML is, who it affects and what symptoms to spot we can empower people to seek medical attention sooner and improve their outcomes.

Spot Leukaemia not only aims to empower the general public with knowledge, but also primary health care professionals. Our ‘living with leukaemia’ report reveals that 22% of AML patients are treated for something prior to diagnosis and you can hear Sandra’s story of being given antibiotics to clear up “an infection” for 6 months before GPs did a blood test that revealed she had AML.

A GP may only see one case of leukaemia every 4 years and with the symptoms being similar to those of common conditions, being able to identify potential cases of AML may be hard. Empowering GPs with knowledge and understanding of leukaemia and its symptoms will enable them to recognise and diagnose patients sooner, improving the patient’s outcomes.

Beyond an AML diagnosis it is important to establish the type of AML that a patient has. With the rise of genetics over the last few decades, there have been key improvements in the knowledge of what causes AML. Cancers are driven by genetic changes that cause the loss of normal control over cell division and cell function.  There are a number of different genetic changes identified in the myeloid cells that are associated with AML and these can be indicators into the response to treatment and hence prognosis of a patient. Therefore, it is better to split AML into subtypes determined by the genetic change.

Providing the patient with knowledge of their AML subtype can be important. It can empower them to know more about what is causing their cancer and be aware of their prognosis. Moreover, it allows the patient’s healthcare team to take a more tailored approach to care and treatment and enables the patient to make informed decision towards this.

The current standard treatments of AML are chemotherapy or transplant. These are non-subtype specific treatments and therefore, leave little room for a tailored treatment process. Drugs that are currently on the horizon and going through clinical trials are, however, changing the landscape of AML treatments. The new therapies are targeted to the specific gene changes driving the subtypes of AML. This in theory means fewer side effects and greater chance of successful treatment.

Building on the knowledge of genetic changes that cause other types of leukaemia and developing appropriate treatment has proven very successful. The best case study is the treatment of chronic myeloid leukaemia that has long been considered incurable. Clinical trials are now assessing whether patients can stop their treatment, which causes minimal side-effects, and remain in long-term remission. This is seen in the eyes of many patients as a cure.

If this same success is the outcome of using targeted therapies for treatment of AML patients, the future is looking much improved, because current 5 year survival rates for patients are poor. Particularly because many of those diagnosed are not fit enough to withstand the current intense treatments.

You can therefore see how increasing knowledge of AML is shaping the treatments and the future for AML patients. In the meantime, it is important to ensure AML patients, their families, carers and healthcare professionals know where to find and how to access support services.    

To find out more about KnowAML visit:

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