The European Parliament’s EPP Group is holding an Online Hearing on the “Right to be Forgotten for Cancer Survivors” this Wednesday, May 12th. YCE’s Katie Rizvi will be taking part as one of the speakers.
The Right to be Forgotten refers to unjust financial discrimination that cancer survivors face long after their treatment is over – be it through health insurance rates or even access to bank loans. It is also one of YCE’s top policy priorities, as laid out in our White Paper.
The event will take place this Wednesday 12 May from 14:00 CEST/Brussels time, and will be led by MEP Tomislav Sokol with contributions from the Portuguese Minister of Science, Technology and Higher Education Manuel Heitor and MEPs Bartosz Arłukowicz (Chair of BECA Committee), Cindy Franssen (EPP BECA Coordinator) and Peter Liese (EPP BECA Shadow Rapporteur).
This Thursday, the European Parliament’s Special Committee on Beating Cancer (BECA) is holding a public hearing on Cross-Border Health, knowledge and data share. As one of our most prominent advocates for bettering access to Cross-Border Health across Europe, Mariana Coutinho will be representing YCE to share her views & experience and to speak about misdiagnosis, lack of access to innovative therapies and the Directive that saved her life.
Cross-Border Health is one of the top five priorities laid out in Youth Cancer Europe’s White Paper. Mariana’s own case study was an integral part of our Cross-Border event at the European Parliament in 2019, with the revelation that 4 in 5 patients in the EU don’t know they can access life-saving treatment for free in any Member State.
Let’s clear the smoke! On April 6th we hosted an insightful webinar on a very hard-hitting and sometimes highly controversial topic. “Cannabis & Cancer” is an open and honest discussion with cancer survivors about the myths and realities surrounding the use of cannabis in cancer care (CBD/THC) in various European countries. We were joined by participants from 19 countries.
From legalities and access, impact on side effects, mental health and personal experiences, this was an opportunity for our panelists and the wider YCE community to lay it all bare.
On February 19th 2021, YCE took part in a webinar to know more and discuss the Right to be Forgotten for cancer survivors: “14 Million Reasons to Discuss Life after Cancer: Implementing the Right to be Forgotten across Europe”.
On behalf of Youth Cancer Europe, Katie Rizvi was be one of the speakers at this online event.
This crucial event focused on the implementation of the Right to be Forgotten, a right which can help ensure that former cancer patients no longer suffer from financial discrimination for financial services such as getting loans and mortgages following the end of their treatment. This event provided a platform for key stakeholders to collaborate on identifying the right path for the implementation of this right across Europe.
The Right to be Forgotten was the central topic at the launch of YCE’s White Paper at the European Parliament in Brussels, in late 2018.
Given the growing number of cancer survivors in Europe, we now have over 14 million reasons to discuss not only the need for an EU approach to the Right to be Forgotten, but also the implementation of a right which has now been widely recognised by European policymakers as it is mentioned in both the Beating Cancer Plan and in the report from Cancer Mission board such legal framework is currently existing in 4 EU Member States and the issue is to make it available for all EU Cancer survivors.
Youth Cancer Europe’s Jaymz Goodman, from the UK, is the main subject of an article in The Sun that puts the mental health impact of cancer in the spotlight. Jaymz’s story is an insightful read that shows just why YCE continues to be strongly outspoken about the attention needed towards mental health care for young people living with cancer, as highlighted in our White Paper and as discussed at length at our recent “Chemo Brain: Cancer and Mental Health” webinar.
Jaymz tells The Sun about the struggle he went through on his way back to normal life – battling PTSD while going back to work and trying to rediscover the joy of life that he felt was given to him as a second opportunity. As he puts it, “there is an unbelievable need for mental health support once you’re out of the cancer bubble”.
Soon the day to day grind became too much for Jaymz and he said his mum started to notice his mood had changed. “I wasn’t showering, wasn’t waking up at a normal time, wasn’t eating much. I was basically wallowing in self pity and trying to figure out what to do.” Jaymz said he was assigned a counsellor but the expert wasn’t a cancer specialist. He highlighted that he was lucky enough to receive private help through his mum’s insurance, but said that he knows not everyone is lucky enough to be able to access this and that even with private help it was hard for him to come to terms with how he felt.
Youth Cancer Europe was featured as one of the leading community voices calling for equal access to be made available to all.
Jaymz said more mental help and guidance should be given to youngsters who are dealing with cancer and is working with Youth Cancer Europe for equal access to quality treatment and follow-up care for young people living with cancer.
Jaymz finished treatment two years ago and in December he would have been in remission for five years. He added that once he was out of the “cancer bubble”, where you have consultants checking you over weekly, and found those tremendous waiting times for post treatment mental health care, he felt like he had “totally fallen out of the system”.
Jaymz added: “Much more needs to be done and I am just lucky that I was in a situation where I could access private mental health care.
“Many are not as lucky as I have been, and so many suffer much more as a result”, he added.
We are proud to continue helping to shed light on the mental health burden of cancer – both through Jaymz’s story and the voices of our wider community. A big thank you to The Sun for the opportunity to be featured in this article, which you can read in full here.
Today marks the all-important #WorldCancerDay on our calendars.
Yesterday, we welcomed the launch of the European Union’s Beating Cancer Plan: an ambitious project that puts cancer care and prevention at the forefront of European health.
The #EUCancerPlan is a massive step forward that demonstrates the potential of the EU’s leverage in the health space, which was, for far too long, only considered as a National Member State issue.
Screening Programmes and Vaccination Schemes will get attention and funding, Comprehensive Cancer Centres will be established (hopefully not to the detriment of progress in Cross Border Healthcare access) and the Inequalities Registry promises to deliver more than just a replacement to the currently available and yearly published indexes.
Childhood cancer has received a much needed and very important spotlight and we are pleased that long-term follow up and screening for late effects is also considered by the proposal of a Smart Card.
We’re especially excited about the emphasis on Personalised Healthcare and more specifically, the actions proposed for new digital platforms using Artificial Intelligence and High-Performance Computing to rapidly test existing molecules and new drug combinations to leverage innovative and promising treatments, as well as the Genomic for Public Health project expected to give secure access to large amounts of genomic data for research, prevention and personalised medicine purposes.
And while the EU Cancer Plan that was put together in one year and has managed to commit €4 billion in funding gives us good reason to hope and squarely puts the fight against cancer in the fast lane, there are some key issues affecting youth with cancer in Europe that are yet to be adequately addressed.
By far the least detailed section of the European strategy is the Survivorship and Quality of Life pillar. Mental health as an area is only mentioned in the current plan through a proposed solution to train a better-prepared workforce, and Fertility preservation, which is one of the five key issues included in our White Paper, isn’t part of the plan at all. Addressing the ‘Right to be Forgotten’, the Commission only puts in view the creation of a code of conduct to make sure that only necessary and proportionate information is used when accessing financial products.
We have listened to many of you who have been in touch with us over the last 24 hours regarding your observations and concerns, and promise, that building on this hugely important first step by the EU, we will now focus on implementation and continue our collaboration with stakeholders as well as with the Commission and the European Parliaments’ BECA committee to bring into focus these high priority areas that we fully believe are an integral part of young people’s cancer experience, cancer survivorship and quality of life.
We will make sure that young people do not feel like they are falling through the cracks while the EU mainly focuses on children and societal health behaviours, population based prevention, diagnosis, treatment and adult cancer experiences in general.
The Commission’s promise, that “today’s publication is the start of the process, not the end” gives us reason for optimism as we proudly celebrate World Cancer Day today and look forward to contributing to how the future of cancer care is shaped across Europe and beyond its borders. And on this note in this hugely significant day, we send you all our love from Youth Cancer Europe 💙💛💙
Today, on the eve of World Cancer Day, the European Union will launch its ambitious Beating Cancer Plan, marking the beginning of a new era in cancer prevention and care.
Youth Cancer Europe and its community of young cancer patients and survivors, are proud to have been a key part of the conversation over the last year leading up to this event, advising the team at the European Commission through our own experiences about the needs and key issues affecting young people living with cancer across the continent, as laid out in our White Paper.
Here at Youth Cancer Europe, we will continue to work in close co-operation with key stakeholders as the all-important implementation phase of the Cancer Plan unfolds, to ensure that all cancer patients, survivors, their families and carers can enjoy a high quality of life, no matter where they live.
Scroll down for additional resources about the Plan 👇
Earlier this month, YCE’s Katie Rizvi spoke at the European Commission’s Beating Cancer Committee’s (BECA) public hearing, set up to aid MEPs draft their report on Europe’s Beating Cancer Plan, and live streamed from the European Parliament.
The consultation focused on patient rights, survivorship and quality of life, and more specifically on topics such as the Right To Be Forgotten and other priorities included in YCE’s White Paper.
Katie’s intervention, which zoomed in on cancer-related fertility impairment and mental health, can be watched again in full above.
Her intervention’s key points included the following:
The EU must put an end to the huge inequalities in access to sexual and reproductive healthcare for young people living with cancer across Europe, and include adoption rules within their right to be forgotten.
Late effect surveillance and long-term follow-up should be an integral part of Europe’s Beating Cancer Plan. European guidelines must be translated into care at national level.
Mental health support for cancer patients and their caregivers needs to be part of routine care and covered within health insurance programs.
EU funding instruments need to be extended to the capacity building of patient organisations for EU cancer policy initiatives to become part of cancer patients’ reality.
A comprehensive list of the points presented from all participants in the hearing can be found here.
Scroll down for more info on our speakers and to watch highlights from the event.
Lauren Mahon, aka GIRL vs CANCER, is a presenter, creator and passionate campaigner. She was diagnosed with breast cancer in August 2016. Desperate for some reassurance and carcinoma companionship Lauren went looking for like-minded women who had faced the c-bomb for advice and encouragement.
In October 2017 Lauren created the GIRLvsCANCER website and launched it as a hub of information and encouragement, a place to be sign-posted to the appropriate charities and support services as well insider tips on how to ‘do’ cancer. She is also a host of the multi-award-winning podcast, “You, ME & The Big C” and is a champion of representation within the cancer community.
Leanne Pero is the multi-award-winning CEO of The Leanne Pero Foundation – a cancer charity which was founded in 2017 to educate, inspire & bring opportunities for Black women going through cancer, to connect with one another and share their stories without fear or shame. The work of the foundation includes the Black Women Rising peer to peer support groups, a podcast, a magazine and the first all-Black cancer portrait exhibition. As well as founding the charity, Leanne is a self-published author, entrepreneur and businesswoman of over 20 years who also runs The Movement Factory and The Positive Day Planner.
A two-time cancer survivor, Brad is a pioneer of the charity sector and his community. Brad is the founder of Alike, a new charity created to combat loneliness through digital tools. He has worked extensively to advocate on behalf of young people. His experience includes being a Youth Expert Advisor for the NHS, petitioning the UK government to offer more support to those being treated for cancer and he has spoken in UK Parliament numerous times about patient experience. As a proud gay man, he is passionate about representation and health outcomes of the LGBTQ+ community. Brad is recipient of The Diana Award, a Young Leader for the Queen’s Commonwealth Trust and a One Young World Ambassador.
Andrea was diagnosed at 15, in 2007, with Ewing Sarcoma. A natural creative, she received a Degree in Fine Arts, and has played a key role in helping to establish new forward thinking brands. Her artistic skills range from photography, illustration, and graphic design, bringing a brand new visual element to the world of purpose-led initiatives. Her unique designs have set the tone for non-profit organisations such as Youth Cancer Europe, Adolescentes y Adultos Jóvenes con Cáncer, and Alike.
Having experienced the long term effects of cancer treatment for over 13 years, Andrea is passionate about using creative outlets as a way of expressing experience of cancer. She says that “art is an escape that has aided in my mental health and stability while dealing with life-long issues from cancer treatment.”
Erik Sturesson was diagnosed with non-Hodgkin’s in 2003, and completed treatment in 2006. Erik is very open about the fact that after cancer had been treated, he has been plagued with late complications ever since, struggling with both mental and physical ailments. He distanced himself from everything cancer, except follow-up visits to the hospital. After experiencing a deep depression and fatigue, he discovered that his medical team weren’t transparent about the long-term effects of cancer. It was then that he decided to start advocating for better post-cancer treatment, especially mental health support.
Emanuel Schipor, 27 years old and 8 years and a half in remission from testicular cancer, is a member of the Steering Committee of YCE, a patient advocate for the Temerarii (The Romanian Community of Cancer Survivor Young People) and a project manager for the Romanian NGO – The Little People Association. He has participated in several PanCare and SiopE conferences and has a particular interest in fertility and fertility preservation for young adults affected by cancer.
With a special thank you to our sponsors for making this event possible:
The consultation will focus on patient rights, survivorship and quality of life, and more specifically on topics such as the Right To Be Forgotten and other such priorities included in YCE’s White Paper. Katie’s intervention will focus on cancer-related fertility impairment and mental health.
The European Commission’s John Ryan (Director, DG SANTE) will also take questions. The live stream is kicking off at 13:45 (CET). More info and access to the live stream here.