Campaigners Launch Manifesto For Rare & Less Common Cancers

brain tumour treatment - women smiling in circle

Cancer52, an alliance of charities representing rare and less common cancers, has launched a manifesto to raise awareness and improve outcomes for people affected by these conditions. The initiative is supported by the charity Brain Tumour Research (BTR), who campaign for better funding for research into brain tumour treatments.  

The manifesto, titled The Other Half: A manifesto to transform outcomes for people with rare and less common cancers, was launched at a reception in the House of Commons, Westminster on 16 April. The reception was attended by member, patient representatives, and MPs, and hosted by former Health Minister Will Quince, BTR reports

Mr Quince said the focus needed to be on public awareness, knowing the symptoms, early diagnosis and treatment pathways. He added: “The life sciences are a real passion of mine, and we need to make sure this sector flourishes – which means patients here in the UK are getting the latest treatments and therapies.”

Almost half (47 per cent) of cancers diagnosed are rare or less common, and they account for 55 per cent of all cancer deaths in the UK. According to Cancer52 CEO Jane Lyons, it was “the passion of the Cancer52 community that brings the charities together, under so many circumstances, to be heard with one voice”.

The manifesto sets out three main priorities. The first is to reduce the number of deaths from rare and less common cancers by 15 per cent by 2040; the second is to increase the early diagnosis of rare and less common cancers; and the third is to call for a new national mission for rare and less common cancers, which puts patient involvement at the centre.

There are over 200 different types of cancer, and according to Cancer Research UK, rare cancers are classed as those that affect a smaller number of people, starts in an unusual place in the body, or is of an unusual type and needs special treatment. However, there is no cut and dried definition of what a rare cancer is. 

Examples of rare and less common cancers include brain tumours, kidney cancer, non-Hodgkin lymphoma, pancreatic cancer, and melanoma skin cancer. It can take longer to diagnose these types of cancers because the symptoms might be more unfamiliar to doctors and less recognisable. 

These cancers may also require more tests to confirm the diagnosis, or the test might need to be sent to a specialist laboratory for analysis, and then further specialist tests might be required. All this can lead to a delay of several weeks before the diagnosis is confirmed, leading to possibly crucial lost treatment time for the patient.  

Furthermore, the doctor may need to consult about the cancer with other specialists nationally or internationally, if they lack expertise in a particular area. It may also take longer to work out an appropriate treatment plan and assemble an experienced medical team. 

In a statement on their manifesto, Cancer52 say: “We call on the next Government to take action to reduce deaths and address the needs of the growing numbers of people with rare and less common cancers. Core to this ambition is a need to minimise the impact of inequalities on people with rare and less common cancers.”

It continues: “There are currently more deaths from rare and less common cancers than there are new cases in the UK. Cancer52 is aligned with Cancer Research UK’s call to reduce deaths from all cancers by 15% by 2040.”

“This goal is even more challenging for rare and less common cancers as incidence is increasing and survival improvements are slower than the four most common cancers.”

“Over the past decade, mortality rates for the four most common cancers have fallen around twice as fast as rare and less common cancers combined. By reducing the mortality for rare and less common cancers by 15% by 2040, around 80,400 deaths could be avoided compared with current projections.”

BTR’s  Policy and Public Affairs Manager Thomas Brayford said: “We welcome Cancer52’s latest manifesto, which helps to shine a light on rare and less common cancers. The other half now needs to be listened to.”

It is hoped that the manifesto will lend further support to the ongoing work of the All-Party Parliamentary Group on Brain Tumours. 

If you would like some information about brain tumour treatment, please contact Mr George Samandouras of Amethyst Radiotherapy.