Youth Cancer Europe participates in EU’s Cancer Mission Consultations - Youth Cancer Europe (YCE)

Youth Cancer Europe participates in EU’s Cancer Mission Consultations

Youth Cancer Europe’s ambassadors were invited to participate in a series of thematic workshops and a conference organised by DG RTD, the European Commission’s Directorate General for Research and Innovation, to take stock of progress and discuss upcoming priorities. This dialogue steers the work of the Cancer Mission, enabling young cancer patients and survivors to co-create initiatives that will help address their specific needs, such as mental health, follow-up care or continuity in education, through research or policy actions.

Youth Cancer Europe’s Katie Rizvi, Sarunas Narbutas, Carmen Monge-Montero, Erik Sturesson, Stewart O’Callaghan, Ania Buchacz, Victor Girbu, Ana-Maria Totovina presented our work and advocated for our research priorities to the DG RTD.  They emphasised the need for a concentrated focus on Adolescents and Young Adults (AYAs) with cancer, highlighting the importance of Equity, Diversity and Inclusion (EDI), and addressing quality-of-life issues such as fertility counselling and treatment options for fertility preservation and reproductive planning before, during, and after cancer treatment.

Further emphasising the need for more data in Adolescent and Young Adult (AYA) Cancer Care, Katie spoke about STRONG-AYA, an EU-funded project where YCE leads patient engagement, and FORTEe project, running the largest randomised controlled trial amongst children and adolescents with cancer to create high evidence for the use of precision exercise interventions, for exercise therapy in oncology to become evidence-based standard in the EU.

To have evidence-based strategies for healthy living, good mental health, nutrition, physical exercise, and a healthy environment as cancer prevention (as well as ameliorating and preventing late effects, secondary cancers, and comorbidities), we need more studies aimed at social determinants of cancer, something that Youth Cancer Europe is militantly advocating for and was eager to discuss on this consultation.

The Young Cancer Survivors Conference was an opportunity for young people living with and beyond cancer from all Member States to interact with representatives and policymakers of EU institutions.

Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at the University of Sheffield, talked about the importance of equity in delivering Adolescent and Young Adult (AYA) Care services across Europe. 

Ana emphasised the mental health burden of cancer survivors, a particularly important aspect to be considered especially after treatment, during the remission phase, when patients eventually start fully realising the impact cancer is having on their lives.

Victor Gîrbu, Patient Advocate at YCE and Member of the WHO Youth Council spoke at the “Inequalities for Childhood and Adolescent Cancer Survivors” session, where he talked about Adolescent and Young Adult (AYA) cancer patients in many geographic regions of Europe being unable to receive appropriate medical care and inequalities experienced by marginalised populations, for example, young people from LGBTQ+ communities. 

In this session, young cancer survivors, WHO and EC representatives, stakeholders, and experts debated the implications of inequities and inequalities for young cancer patients and survivors and the substantial differences experienced by young people living in different countries,  regions, and belonging to different social groups concerning various aspects during their cancer treatment and follow-up care (e.g. services, information, continuity of education etc), both in terms of access and quality.

Nicola Unterecker, Patient Advocate at YCE, spoke during the Research actions to address survivorship” session. This session focused on the efforts of developing more specific, effective, and less toxic treatments, as well as investing to better understand and manage adverse effects during and after treatments. 

“Research needs to shift from killing cancer to curing people better. We need research that looks at real-life survivorship issues. No data means no hope for effective policy changes”, said Nicola.

Another aspect that was addressed was that young cancer patients and survivors are voicing strong interest but have limited opportunities for their direct involvement in the design and implementation of research studies (e.g. clinical trials). Examples of successful research projects and initiatives addressing survivorship, innovative treatment approaches, and patient’s involvement in the research were showcased.The overarching goal of the EU Mission on Cancer is to improve the lives of more than 3 million people by 2030 through prevention, optimization of diagnosis and treatment, increased knowledge about cancer, and ensuring equitable access to the above all across Europe. To achieve its ambitious goals, the EU Mission on Cancer is working hand in hand with Europe’s Beating Cancer Plan.

These engagements have created the basis for the establishment of a new dialogue between young cancer patients, survivors and the European Commission, through the Cancer Mission. 

As announced at the conference and as an immediate follow-up, a workshop will be organised in May 2023, to deepen discussions on some specific issues of survivorship, which will contribute to shaping upcoming cancer Research&Innovation and policy actions.

Watch the EU Mission on Cancer Video  – Addressing the needs of Young Cancer Survivors HERE.

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