The Here & Now call-to-action features at the European Breast Cancer conference

In March 2016 the Here & Now team took the campaign’s call to action to the 10th annual European Breast Cancer Conference (EBCC) 8-10 March, Amsterdam. The conference stand was designed to continue to raise awareness of advanced breast cancer (ABC) within the clinical and patient advocacy community and also to gather wider insight into the issues facing these women across Europe.

At the stand, delegates were asked to pledge their support for the campaign call-to-action by placing a coloured stamp on the wall alongside their country and also to vote on the one point of the call-to-action they felt was the most important.

The Here & Now stand at EBCC showing the ‘show your support’ wall and voting system

Overall, 140 votes were cast across 42 different countries. The most votes were for point number five – supporting the drive to increase the number of specialist breast cancer units in Europe, further highlighting the need for such centres in order to provide optimal care for women living with ABC.

Moving forward, we hope to build on the work of the Here & Now campaign to date and look into ways of how we, in partnership with the ABC community, can support the development of specialist centres alongside continuing to spread the word of the Here & Now campaign call-to-action to bring about meaningful change for patients.

Voices of Strength launches at ABC3

The European ‘Voices of Strength’ creative exhibition launched at the 2015 Advanced Breast Cancer Third (ABC3) International Consensus Conference in Lisbon, Portugal.

The Voices of Strength photography exhibition featured the inspirational and empowering words of women living with ABC from three European countries, Greece, Portugal and Cyprus. The unique collection of photographs shed positive light on the realities of ABC, in order to raise awareness amongst both the breast cancer community and the general public. The exhibit provided a platform for patients to share valuable insight and wisdom, bringing strength and positivity to other women living with ABC.

The exhibition ran from the 5th – 6th November 2015, and was widely and positively received by delegates attending the congress, as well as many European clinicians and Maria Cavaco, the First Lady of Portugal. Across the two days over 300 delegates visited the exhibit and many chose to share their own personal affirmations on Facebook, Twitter and Instagram using the hashtags #ABClisbon and #Here&Now, further widening the reach of the campaign.

Maria Cavaco, The First Lady of Portugal and Dr Fatima Cardoso during the Voices of Strength exhibition

The Voices of Strength photography exhibit featured patients from Greece, Portugal and Cyprus

I Am Not The Cancer at European parliament

From 27th-29th January 2015 the I Am Not The Cancer art installation was exhibited in the lobby of European Parliament . The campaign was invited by Member of European Parliament (MEP) Emma McClarkin, who has supported Here & Now since its inception in June 2013.

The event was attended by over 50 parliamentarians, policy makers, patient organisations and media representatives from eight countries. As part of the opening, Tootje Boutkan – who featured in the original installation – gave an emotive and powerful speech about her ‘life with ABC’ including her personal experience of coping with the disease, from the physical through to the emotional, practical and even financial implications.

In addition to the installation, European Breast Cancer Coalition, Europa Donna, launched their written declaration – a statement of policy developed by a number of European groups working in the area. The statement covered breast cancer more widely but most importantly included specific points to address the needs of women with ABC. Following the meeting, in July 2015 the declaration received the required 376 signatures from MEPs putting ABC firmly on the policy agenda as EU institutions, including the European Commission and/or Council are required to inform parliament about how they intend to move forward.

Once again the installation drew attention to the campaign. The Lancet Oncology published an in-depth review of the installation and its significance, praising the installation for being a “…reflective piece…underpinned by a drive for pragmatic solutions” that gets its “point across through such unconventional means.”

To read The Lancet Oncology review in full please click here.

The ABC roundtable meeting: Driving a call-to-action to improve patient outcomes in ABC

On 28th October 2014 the Here & Now campaign convened a group of 14 high profile oncologists, breast cancer nurses, patient organisation representatives, payers and health economists from nine countries across Europe to discuss the current care and support available to patients with ABC.

During the meeting attendees considered a wide range of topics from the barriers to innovation in ABC to the progress in treating cancer and the importance of the patient perspective.

As further background to their discussions attendees were also presented with new findings from the Here & Now HCP Survey commissioned by Novartis Oncology. The survey revealed the needs and obstacles faced by healthcare professionals (HCPs) working to diagnose, treat and manage ABC patients.

After considering the Here & Now HCP survey data and debating key issues facing women with ABC, the attendees agreed a set of consensus points which now form the basis of the campaign’s call-to-action. The call-to-action aims to drive access to optimal care and support for women with ABC across Europe. It will also be championed by each Here & Now campaign ambassador at a local level and shared with their peers in order to achieve the objectives set out in the statement.

The Here & Now call-to-action:

  • Publish existing ABC survey findings
  • Obtain new ABC patient quality of life data
  • Address challenges in access to a broader range of oncology treatments
  • Create ‘patient navigators’ in Multi-Disciplinary Teams
  • Support drive to increase the number of specialist breast cancer units

Click here to watch the stories of women living with ABC that were presented at the ABC roundtable meeting

Download the campaign call-to-action

Download the Here & Now HCP Survey key findings report

Here & Now campaign launches in Brussels

On 17th June 2013, the Here & Now campaign was launched in Brussels, Belgium, where the breast cancer community gathered to discuss and debate how support and care for women living with advanced breast cancer can be improved.

The meeting was attended by a total of 126 delegates, with representation from 35 European countries plus Asia and the Middle East. Meeting attendees comprised patient group representatives, patients, oncologists, breast cancer nurses, psycho-oncologists, members of the European parliament and Novartis Oncology.

The launch of Here & Now coincided with new findings from a European survey, commissioned by Novartis Oncology, which revealed poor public understanding of ABC. Click here for further information about the findings.

Download the Patient and Carer Survey Key Findings report

Media from across Europe attended the showing, which resulted in high profile coverage of the campaign and event to help drive awareness.

Here & Now report launched at ABC2 conference, Lisbon

Reactions to the I Am Not The Cancer art installation at the ABC2 conference

2013 campaign activity

On 7-9 November 2013, the Here & Now report was launched at the advanced breast cancer second (ABC2) international consensus conference in Lisbon.

The report, entitled, Unveiling the impact of advanced breast cancer on women, families, society and the economy across Europe, examines the personal, societal and economic impact of ABC in Europe.

Written by Professor Pamela Abbott, a Senior Researcher at Aberdeen University, UK, the report was based on the results of the Here & Now pan-European patient and carer survey involving over 300 patients and carers across nine countries. It provides a rich analysis of the research findings and highlights that advanced breast cancer is not just a personal tragedy, but a social problem for the people concerned, their families and friends, and society as a whole. It also considers the loss of ‘useful work’ and contributions women with ABC make outside of the traditional workplace – the so-called ‘grey economy’.

Since its launch, over 1,000 copies of the report have been distributed across Europe to healthcare professionals, MEPs and patient organisations, and over 500 copies were distributed at the ABC2 conference itself.

Click here to download a copy of the report, or to request a hard copy, please contact the Here & Now team using the following details: Here& / +44(0) 20 8939 1263.

The Here & Now art installation, I Am Not The Cancer, was shown at the conference to mark the launch of the report and campaign website.

Conference Chair, Dr Fatima Cardoso, also highlighted the campaign as part of her opening speech, introducing the report to the European breast cancer community.