[10 January 2019] The IBTA is delighted to announce that the next International Brain Tumour Awareness Week will be taking place from Saturday, 26 October to Saturday, 2 November 2019 inclusive. Now in its thirteenth year…
The All.Can initiative has presented the first findings of its UK patient survey at a UK Parliamentary event. They showed that 36% of people considered the cancer diagnosis stage as the biggest cause of inefficiency in their care. Two in five people with cancer had been initially misdiagnosed with something else – sometimes on multiple occasions – and one in five had to wait more than six months for a cancer diagnosis.
The findings were presented at the Britain Against Cancer conference, hosted by the All-Party Parliamentary Group on Cancer. The event took place on 4 December at the UK Parliament in London. The UK national initiative is the first of nine countries to release findings from the All.Can patient survey, which sought patients’ and carers’ perspectives on inefficiencies in cancer care.
All.Can is an international multi-stakeholder policy initiative that is focused on improving efficiency in cancer care, in which the IBTA is one of the stakeholder organisations. The UK national initiative is the first of nine countries to release findings from the All.Can patient survey. A report of the findings from all countries is due to be published in early 2019. Read more.
The Medicines and Healthcare products Regulatory Agency (MHRA), the body responsible for regulating all medicines and medical devices in the UK, has announced proposals for arrangements should the UK leave the European Union on 29 March 2019 without a negotiated deal (termed 'no-deal Brexit'). The Agency has said that following the outcome of the EU referendum, they are working closely with the Government to analyse the best options and opportunities available for the safe and effective regulation of medicines and medical devices in the UK.
Following a consultation process, the MHRA has issued arrangements and guidance for medicines, medical devices and clinical trials. Announced on 3 January 2019, they include: automatically converting Centrally Authorised Products (CAPs) to UK Marketing Authorisations (MAs), a process known as ‘grandfathering’; a full accelerated assessment for new active substances; and aligning, where possible, with the EU Clinical Trials Regulation. A full list of arrangements can be found on the gov.uk website here.
Speaking about these proposals, Dr Ian Hudson, Chief Executive Officer at the MHRA said:
“The responses to our consultation have helped us prepare a robust plan to make sure our regulatory processes for medicines, clinical trials and medical devices are fit for purpose on exit day.
“We are committed to giving businesses and individuals as much certainty as possible, as soon as possible to make sure the UK continues to be at the forefront of regulatory innovation and processes.”
The MHRA proposals are still subject to Parliamentary approval of the relevant statutory instruments that are required to bring these proposals into law.
Read the official MHRA announcement here.
[14 July 2018] Copies of the 2018/19 world edition of our “Brain Tumour” magazine have been landing in the letterboxes of subscribers in over 110 countries across the globe, free of charge.
An Award that honours projects that help to tackle some of Europe’s most pressing health challenges has been presented to the European Cancer Concord (ECC), a pan-European collaboration of which the IBTA is a partner. IBTA Chair Kathy Oliver sits on the ECC’s Executive Committee. The European Health Award was established in 2007 to promote cross-border cooperation, multi-country working and the development of transferable initiatives which address current challenges with Europe such as disparities in health status, access to services and the provision of treatment.
The 2018 award-winning project, entitled ‘The European Cancer Patient’s Bill of Rights: A Catalyst for Change and an empowerment tool for cancer patients across Europe’ involves an equal partnership between cancer patients, healthcare professionals and cancer researchers.
Working in close partnership with European patient organisations and professional societies has been a key part of the initiative.
One of the key outputs from the research has been the development of a 70:35 Vision: 70 per cent long term survival for all cancer patients across Europe by 2035. Professor Peter Selby, President of ECC and Professor of Cancer Medicine at the University of Leeds said: “Our 70:35 Vision is built upon the pillars of cross-border and interdisciplinary cooperation, sharing best practice and ensuring that research and innovation gets translated for the benefit of patients.
“This is a superb example of how cooperative European activities that involve sharing best practice between countries can result in top class prize-winning initiatives.”
Following news of the announcement, Margaret Grayson, cancer survivor and Chairperson of the Northern Ireland Cancer Research Consumer Forum, said: “The news that the European Cancer Patient's Bill of Rights has received a top European award is wonderful. This collaborative initiative has patients absolutely at its centre.”
The IBTA is delighted that the ECC has been recognised and honoured with this prestigious award.
The European Cancer Concord (ECC) is an equal partnership:
- Professor Peter Selby, University of Leeds, UK and President European Cancer Concord
- Professor Mark Lawler, Queen’s University Belfast, UK and Vice President European Cancer Concord
- Professor Ian Banks, Chair European Cancer Organisation (ECCO) Patient Advocate Committee, Brussels, Belgium and Vice President European Cancer Concord
- Professor Thierry Le Chevalier, Chair, European Cancer Concord Executive Committee, Institut Gustav Roussy, Paris, France
- Professor Francoise Meunier, Director of Special Projects, European Organisation for Research and Treatment of Cancer (EORTC)
- Kate Law, Director, Lister Institute for Preventative Medicine, London, UK
- Peter Kapitein, President, Inspire2Live, Amsterdam, the Netherlands
- Dr Tit Albreht, Coordinator of the Joint Action iPAAC, National Institute of Public Health of Slovenia,
- Dr Sakari.Karjalainen, President of the Association of European Cancer Leagues, Helsinki, Finland
- Kathy Oliver, Chair and Co-Director of the International Brain Tumour Alliance, London, UK
- Dr Sarper Diler, President Myeloma Patients Europe, Istanbul, Turkey
- Professor Carlo LaVecchia, Professor of Cancer Epidemiology, Università degli Studi di Milano, Milan, Italy
- Professor Christoph Zielinski, President of the Central European Cooperative Oncology Group, Vienna, Austria.