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5 Things You Need to Know... May 2018

Published on 07 June 2018 back to previous

You know it has been a productive few weeks at EuropaColon when you hardly see your colleagues for the entire month!  We have all been busy with various projects, which have taken us all off in different directions. However, there’s a lot to show for it at the end of the month!

1)    Oesophageal/Gastric Cancer Patient Survey is LIVE! 

We are delighted to announce that our Oesophageal/Gastric Cancer Patient Survey has now gone live. It is available on our website in 12 languages (English, Flemish, French, Greek, German, Italian, Latvian, Netherlands, Polish, Portuguese, Russian and Spanish). 

The survey is open for anyone who has been diagnosed with oesophageal or gastric cancer. If that’s you, please do complete the survey – your input could make a real difference. We want to use the results of this survey to raise awareness of these cancers amongst Health Ministers, policy makers, the media, clinicians and anyone else who can help us make a difference for patients.

We passionately believe that more funding is needed for these cancers and the patient experience needs to improve through early diagnosis and better medicines. Only by understanding and communicating the patient perspective can we get to the heart of what matters most.

Anyone who can support us with raising awareness of this survey is invited to make contact with Geoffrey Henning to discuss how this can be achieved in your hospital or clinic. EONS, the European Oncology Nursing Society has already agreed to support the survey and we look forward to working with them.

We’ll provide more updates in the weeks ahead!

2)    There’s a new Digestive Cancer Group at the European Parliament

Staying with digestive cancers, there was a significant step forward taken in May with the creation of the Digestive Cancer Group, formed by Members of the European Parliament (MEPs) to support digestive cancers.

The group is comprised of 17 MEPs from all parties with the intention to raise awareness and support research and treatment for these cancers. The Group is chaired by MEP Pavel Poc (S&D, Czech Republic). The Co-Chairs are MEP Nessa Childers (S&D, Ireland), MEP Michèle Rivasi (Greens, France) and MEP Marian-Jean Marinescu (EPP, Romania).

The Group was created to raise awareness of digestive cancers and to promote policy initiatives to help prevent digestive cancer, deliver early diagnosis and ensure equitable health for all citizens across Europe. This is a very important step forward for digestive cancers and we look forward to working with the Digestive Cancer Group in the future.

3)    EU meeting to help cancer patients get back to work

A meeting was held in May at the EU Parliament on the topic of better policies for metastatic cancer patients. With the support of Deidre Clune MEP, this project has been gathering import over the year to bring attention to the topic of returning to work after a cancer diagnosis.

There are often difficulties and complications, largely with the various legal systems or employment conditions in different countries. A number of initiatives are being developed to address the rights of people wishing to return to work after an acute illness and we remain committed to supporting these as they unfold.

A key issue that was raised – for this and many other aspects of cancer care – is the difficulty of capturing data that clearly indicates the number of people with metastatic cancer in Europe. With the absence of comparable registries and the added complication of confirming a metastatic diagnosis, it is difficult to know the size of the problem.

The good news is that the EU Parliament is aware of the issue and the need for change. We will keep you updated with further discussions – both on returning to work after a cancer diagnosis and the push for better cancer registries.  

4)    The benefits of biosimilars

Our Director of Group and Project Development, Zorana Maravic, attended the 16th Biosimilar Medicine Conference,to provide the patient perspective on biosimilar medicines.

Biologic medicines have been transformational for colorectal cancer, having a significant positive impact on life expectancy. Of course, there are still significant issues with equality of access to these life-saving medicines and many people are still unable to have them due to high costs.

Biosimilars are almost identical copies of the original biologic products, which can be developed once the original product’s patent has expired. They can be significantly cheaper than the original product and therefore should have an important role to play in equality of access.

However, at the same time, it is important that patients are kept fully informed of all the relevant information as we believe it is important patients are armed with the full facts around what they are being prescribed.

So, while we fully support the development of biosimilar medicines and believe they have a vital role to play in increasing access, we believe it is vital that patients have all the information they need to be able to make their own informed decision. 

5)    Lots more in the pipeline!

We have had a lot of great preliminary meetings this month which could turn into exciting projects.

For example, our CEO Jola Gore-Booth spoke with EURORDIS – a non-profit alliance of 804 rare disease patient organisations from 69 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. There may be great potential to partner together to raise awareness around rare gastrointestinal cancers.

She also met with Professor Jane Blazeby and Dr Angus McNair from the University of Bristol in the UK who are doing some excellent work on the topic of Patient Reported Outcomes Measures (PROMs) in the UK. We look forward to further discussions to see how we can take some of their findings to the European level…….so watch this space!

Jola is also a member of the ULTRAPLACAD Consortium funded by Horizon 2020 which met this month in Nijmegen to finalise their project on the potential role of liquid biopsy in the very early diagnosis of CRC. The project is showing a lot of promise and hopefully they will be able to raise more funds to continue this great work in 2019

So, lots of meetings and lots of exciting projects in the pipeline!

We will keep you informed of any key updates in the next newsletter. Until then, we wish everyone a very happy start to the European summer!

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