cancer patient advocate Archives - Youth Cancer Europe (YCE)

Our remarkable project deserves an equally remarkable ending! 

Join us from 7 – 12 August 2024 in Cluj-Napoca, Romania, at the UNTOLD Festival for the grand finale of our EU-CAYAS-NET project! 

Young people aged 18 and above, living with or beyond cancer, are invited to register their Expression of Interest below for the chance to win a full pass ticket to UNTOLD, regardless of prior project participation.

  • Travel expenses and accommodation in student dorms are included.
  • While registration is open to the public, spots are limited. Selection will be made on a first come first served basis.

UNTOLD is one of Europe’s largest electronic music festivals and this edition will feature top artists like Martin Garrix, Sam Smith, Swedish House Mafia and Lenny Kravitz. Exclusive meet-and-greet opportunities will be arranged, offering some selected young cancer survivors the unique chance to go backstage, meet, talk, and engage with the artists.

The event is organised by Youth Cancer Europe and will gather all project participants and associated partners to celebrate the accomplishments of the two-year EU co-funded project. Topics of discussions and activities will include adolescent and young adult cancer care, mental health, quality of life, cancer survivorship, health equity, and more.

Let’s celebrate two years of hard work, dedication, and incredible achievements!

Learn more about the projects we are leading within EU-CAYAS-NET and about our participation in other EU-funded projects here.

To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

The European Parliament event organised by Youth Cancer Europe and hosted by MEP Stelios Kympouropoulos brought discrimination into focus and addressed the needs of minorities, vulnerable groups and disenfranchised communities like Roma, LGBTQ+, immigrants, and other underserved populations in the cancer care setting.

The Recommendations were developed collaboratively and the process was led by young people living within and beyond cancer in the Equity, Diversity, and Inclusion (EDI) workstream overseen by YCE, as part of the European Commission co-funded European Network of Youth Cancer Survivors project.

Based on our findings, we focused on four important areas to ensure fairness and inclusivity in cancer care:

  1. Race, ethnicity, culture, refugee, or migrant status:
    To address disparities and ensure equitable access to cancer care for individuals from diverse racial, ethnic, and cultural backgrounds, including refugees and migrants.
  2. Gender identity and sexual orientation:
    To promote awareness and support for LGBTIQ+ individuals affected by cancer, ensuring they receive respectful and inclusive care regardless of their gender identity or sexual orientation.
  3. Age, physical and mental development, and wellbeing:
    To recognize the unique needs of individuals at different stages of life, including children, adolescents, and young adults, and recognise mental health status and neurodiversity as important determinants of health outcomes.
  4. Education, career, and socioeconomic status:
    To address social determinants of health and ensure that individuals from all socioeconomic backgrounds have access to quality cancer care, regardless of their education level, career status, or living conditions.

RECOMMENDATIONS

Our recommendations for strengthening EDI in research: improving patient data collection and enhancing research team diversity

EU member states should systematically and within legal bounds improve the data they hold for ethnicity, LGBTIQ+ identity, psychosocial development, quality of life, physical and mental health, education, socioeconomic status and employment rights of cancer patients. The EU should work towards a standardised data collection that is shared via the EU Health Policy Platform alongside other major EU initiatives. An equal weight should be given to efforts to increase diversity and inclusion in healthcare and research personnel.

Our recommendations for improving EDI in cancer services: providing culturally sensitive care and promoting diverse representation in care teams

Cancer services should develop, improve, and implement culturally sensitive care, ensuring that patients receive support that respects their cultural, psychosocial, financial, educational, reproductive, and sexual needs. Inclusive cancer services also require the promotion of diverse representation in care teams to better reflect the communities they serve. Patients with lived experience should be actively engaged in health strategy development, funding decisions and building services and the co-creation of new policies related to their care, fostering a collaborative approach that prioritises their unique perspectives and needs.

Our recommendations for fostering diversity and inclusion within patient organisations

Patient organisations should have a more proactive approach to achieving diversity and inclusion by actively recruiting individuals from diverse backgrounds, providing training on cultural competency and sensitivity, and implementing policies and practices that promote inclusivity and equity within the organisation. By embracing diversity and inclusion, patient organisations can better serve their communities and advocate for more equitable healthcare policies and services.

We also urge the Commission to prioritise the integration of equity, diversity, and inclusion (EDI) principles throughout all EU health initiatives with dedicated funding and resources for research, programs, and interventions aimed at addressing disparities in cancer prevention, diagnosis, treatment, and survivorship among marginalised and underserved populations, and look at social determinants beyond the currently captured data in the Inequalities Register.

Additionally, the Commission should promote the development and implementation of EDI-focused policies, guidelines, and best practices across EU member states to ensure equitable access to quality cancer care for all individuals, regardless of their socio-economic status, ethnicity, gender identity, sexual orientation, age, or other factors.

The European Network of Youth Cancer Survivors project demonstrates how multi-stakeholder engagement can inform practical steps towards more equitable and inclusive cancer care. Building on the findings that informed our recommendations, the project EDI workstream also set out to develop an Equity, Diversity and Inclusion Toolkit and Training Programme.The interactive curriculum featuring a train-the-trainer toolkit, in-person workshops and online content aims to equip three audiencesclinicians and healthcare providers; patient and community organisations; as well as researchers and educational institutions with greater awareness and skills to challenge prejudice and tailor cancer care to underserved groups. If interested, register here.

Read the full Policy Paper here

Recommendations for Equitable, Diverse, and Inclusive Cancer Care in Europe

Find the translations of the Policy Paper in

Youth Cancer Europe is excited to announce that our “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” Policy Paper will be launched in the European Parliament in Brussels!

The event will bring together Members of the European Parliament, health organisations, patient advocacy groups, and other stakeholders, and will invite young people living with and beyond cancer to share their experiences, their research findings and policy recommendations.
Discussions will have a strong focus on the needs of minorities and the especially vulnerable groups and disenfranchised communities like Roma, LGBTQ, immigrant, and other underserved populations.

The “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” collaborative document was developed with patients in the driving seat and benefited from large stakeholder input within the EU co-funded EU-CAYAS-NET project to deliver on Europe’s Beating Cancer Plan, resulting in recommendations that are designed to be aspirational, actionable, and most importantly, achievable.

Check out the full agenda here

The event, organised by Youth Cancer Europe, is set to take place on Tuesday, March 21, from 11-13 CET, in Room ANTALL 6Q1, and will be hosted by MEP Stelios Kympouropoulos.

Seats are limited, please register here today so we can save a spot for you!

Earlier this month YCE patient advocates Nicola Unterecker and Mariana Coutinho have been invited to
take part in a youth policy dialogue towards a comprehensive approach to mental health with
Commissioner Stella Kyriakides, in Brussels.

Nicki and Mariana shared their personal stories and highlight the struggles faced by young people living
with and beyond cancer, talking about loneliness, isolation, health anxiety, concerns about returning to
work, changes to family dynamics, and more, all the while emphasizing the need for free and specialized
mental health services for all young adults with cancer, before and after treatment.

Speaking at the event, Mariana shared her last year’s personal experience of loneliness and isolation
during cancer treatment, pointing out the absurdity of patients having to pay for mental health services
that should be free.

“I tried to seek the help of a psycho-oncologist in a public hospital, but I would have needed to wait for
several months, so I ended up paying out of pocket for private appointments”, stated Mariana.

She called on the European Commission “to improve access to mental health services, through funds
allocations and more innovative services” that would enable cancer patients and survivors across the EU
to receive appropriate and free mental health care.

From left to right in the picture, Nicola Unterecker and Mariana Coutinho.

“The fear of reoccurrence, depression, PTSD, isolation, body image issues due to changes caused by medications, loss and grief are daily struggles for many cancer fighters and survivors, including me. There are so many burdens on us already. Finding mental health support and being able to afford it should not be an additional one” said Nicola in her powerful intervention.

Nicola Unterecker and EU Health Commissioner Stella Kyriakides

Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at University of Sheffield, originally from Romania, shared her own story of childhood cancer in a high-level event hosted by European Commission’s Stella Kyriakides and Acko Ankarberg Johansson, Swedish Minister of Health Care.

(Stockholm, Sweden) 1st of February 2023 – In the run up to World Cancer Day 2023 the European Commission and the Swedish Presidency of the Council of the European Union co-organised a high-level conference on cancer. The conference took place under the title “Equity, excellence, and innovation – modern cancer care for all, Europe’s Beating Cancer Plan – eradicating inequalities within cancer care”

Following keynote speeches from Acko Ankarberg Johansson, Swedish Minister of Health Care, EU Commissioner Stella Kyriakides, Dr. Hans Kluge, WHO Regional Director Europe, Dr. Douglas R Lowy, Principal Deputy Director, National Cancer Institute and Spanish Minister of Health, Carolina Darias San Sebastián, Ana Amăriuței delivered a powerful and emotional speech, addressing topics such as Equity, Diversity, and Inclusion and spoke about EUCAYASNET, the first-time-ever EU funded project, coordinated and managed by young people with lived experience of cancer.

Ana called on the Swedish Presidency of the Council of the European Union and the European Commission “to provide a sense of unity and security by ensuring appropriate access to medical care to every single cancer patient in Europe regardless of their gender, race, socioeconomic status, sexual orientation, place of birth and residency, religious or spiritual beliefs” as all stakeholders work towards eradicating inequalities in cancer care.

Speaking at the event, Ana said: “We owe these changes to our loved ones and the cancer patients who are no longer with us and for whom we were too late to make a transformation, but most of all, to all those 2.7 million Europeans who are diagnosed each year with cancer”.

In addition to presenting the latest deliverables under the EU Cancer Plan, participants at the conference discussed three main topics: prevention, early detection, and the conditions for data-driven cancer care.

From left to right in the picture: Stella Kyriakides EU Health Commissioner, Ana Amăriuței, Biomedical research PhD student and YCE patient advocate, Mia Rajalin, Vision Zero Cancer and Lung Cancer Association, Acko Ankarberg Johansson, Swedish Minister for Health Care and Carolina Darias San Sebastián, Spanish Minister of Health.

Check out the highlights from our recent event at the European Parliament in Brussels to present our white paper and to tackle the first of five key issues addressed in it, the “Right To Be Forgotten” for cancer survivors.

Our event is already creating ripples across Europe. We were invited to the BBC to talk about the issue of financial discrimination against cancer survivors, which was also echoed by The Independent and the Daily Mirror newspaper. As a result, UK MPs and the ABI (Association of British Insurers) are already taking part in the conversation.

This is only the beginning of a long road ahead as we engage with institutions and stakeholders across Europe to create a brighter future for young people living with cancer.

“Today we are launching our white paper where we address five very particular issues and where we issue five calls to action. It’s not enough that we talk about cancer generally and it’s not enough that we talk about the patient experience generally. It’s very important that issues that are relevant for youth are talked about.”

Katie Rizvi, Co-Founder and CEO, YCE

“This event is really important because we need to increase awareness and to sensitise various stakeholders about the main issue of discrimination and cancer survivorship. There are more and more survivors, they are young and they have a whole life ahead of them, so it’s really important to involve the youth.”

Françoise Meunier, Director Special Projects, EORTC

“It’s really wonderful seeing our hard work come to fruition and it’s unbelievable that we are actually here in the European Parliament talking about youth cancer rights. Youth Cancer Europe are enabling us, young people, to change the lives of other young people across Europe. We are the only ones who understand what it’s like to go trough these services. So, ultimately, we should be the ones deciding on what happens to them for future generations.”

Bradley Gudger, YCE Ambassador

“We bring a different perspective. For us, it is not a short-term indication, a short-term experience; cancer stays with us for life. Then there are impairments that we are facing for life and some of them we should not face. Today we have shown that we will do what is necessary to address key stakeholders and policy makers to ensure that those who live with cancer are no longer abandoned by their institutions and facing harsher discrimination than convicted criminals. France has already lead the way in showing that this can be done with supportive legislation, and we will continue to push until this becomes a reality for everyone in Europe.”

Šarūnas Narbutas, Co-Founder and Chairman, YCE

“I didn’t know how great of an impact it could have financially, in mortgage, in insurance and then applying for a job. That is unfair discrimination which we need to stop in Europe.”

Sirpa Pietikäinen, MEP

“It is clear that for young people the situation is even harder because they are at the beginning of their life, they have passed through difficult treatments and then, they are facing many other barriers.”

Cristian-Silviu Buşoi, MEP

“There is a desire to bring insurance as quickly as possible to people, and often that means we move away from very exact risk assessment. Which is unfortunate, because that usually has a sort of negative outcome for those with a history of cancer. And I think that reminder is always worth giving to the companies who are perhaps overly focused on the cost, but not on the consumer. There is an awful lot of desire to bring about change. The passion showed today, as already said, was more likely to come from Youth Cancer Europe than perhaps some of the other patient bodies.”

John Turner, Head of Life & Health Underwriting, Continental Europe, Swiss Re

A special thank you goes out to our sponsors for helping make the event possible.

Robin, from Sweden, was diagnosed at the very early age of 9. In this interview, he tells us about his cancer journey, his experience with his doctors and how that shaped the person he is today. Robin is an active collaborator of the charity Ågrenska. He regularly visits hospitals where he talks to childhood cancer patients about his own experience, in addition to organising two charity golf tournaments of his own. Find out more about Robin’s journey in this video

Finding Out About Late Complications

Erik is a young cancer survivor from Sweden. Like many other survivors, he has faced the difficulty of late effects as a result of his cancer treatment. While this is a very common issue for a large number of survivors, it is still a taboo subject that patients are often not informed about correctly. As a result, many survivors are then caught off guard with these, often years after their cancer treatment has been completed.

For Erik in particular, this has also meant having to deal with mental health issues such as depression and anxiety, which are only exacerbated by the confusion and lack of information surrounding late effects.

Today, Erik is a strong advocate for Youth Cancer Europe’s cause, actively participating in meetings and workshop both across the continent and in his native Sweden. In this piece, you can read more about Erik’s fight with late effects and dealing with mental health as a cancer survivor. You can read more about his story in his personal blog here (in English and Swedish): https://www.livetefterbarncancer.se/en/erik-sturesson-cancer/

Getting over my cancer treatment with group therapy

Last year in Stockholm, I attended the second session of group therapy organized by the Swedish Childhood Cancer Foundation and its project, Maxa Livet. We’re part of a pilot project and we’re a reference group. Some members are here just because we need enough people to actually have group therapy, which I’m grateful for, seeing how others, like me, are here because we need it.

I have tried regular therapy before, but it wasn’t for me. I didn’t like the idea of group therapy either; I was a very closed person, I didn’t want to share these things with a group of strangers like that. I didn’t even post images on Facebook before 2017 – essentially the only posts I’ve made have been when someone had a birthday. Regular therapy didn’t work either; I always felt like they didn’t understand the issues I was dealing with. I mostly got the “be happy you’re alive” response.

Consequently, I never managed to get over my chemotherapy treatment mentally, and every time I’ve been fatigued since my treatment, it’s been following the same pattern. I’m active, almost like normal, then I get more and more tired, I become inactive, I get anxiety attacks because I feel trapped in my own body, and then I become depressed. My latest depression was unlike any of the others though, due to its cause. In my opinion, due in large part to being a physician’s pharmaceutical error.

Yet, in many ways, this depression could be one of the best things that has happened to me. It was the price I paid to see how bad the support survivors receive in Sweden is. It made me realize that although I’ve been surrounded by a lot doctors with a very wide variety of disciplines, they never told me the truth, mostly because they didn’t know the truth themselves. Either way, I never got the information or help I needed, and which I didn’t realise actually existed.

The revelation of learning about “late side effects”

I’ve always known that I got all these side complications from the chemotherapy or from cancer itself; it was the only logical reason. But as I’ve said before, there’s nothing in the media, anywhere, about this, let alone any information on how common it is. Not a single physician ever mentioned late side effects, not even my adult oncologist. Fine, I knew the cause of my issues. It’s pretty simple: all I’d do is look at my life prior to and after cancer. Before cancer I was athletic, used zero drugs, including alcohol. Would I take 14 different substances every day today without the cancer? No. However, simply knowing the term “late complications” put things into perspective. It made me realize I’m not alone or in the minority. Why then, has the system been so terribly bad when it comes to our treatment? Because it’s taboo, that’s why.

I was always a special case; eventually I got used to this sort of reasoning from my doctors. My endocrinologist had me do tests so rare that they only did them roughly twice a year, meaning the nurse had to read the instructions before performing the test. I got used to it. Then, I got this depression and at the same time, the Swedish medical system started to change, ever so slightly, for survivors. Not for those like me though, who already had vast health issues, a fact that was made abundantly clear in a radio interview I was involved in. One of the participants in this interview was my old child oncologist. He stated outright that these steps being taken now are not for people like me, who are already ill from the chemotherapy treatment. It’s for the next generation of survivors. I know this is something that frustrates him. Sweden have had the knowledge and means to care for us survivors, but chose not to.

I wasn’t just waiting around, doing nothing

I sometimes blame myself for ending up where I am now. I feel that I should have read more about these issues myself. I couldn’t, though. It simply made me depressed to look these things up. Adding to this, every time I saw something, it was always a positive read; they had no issues at all – seemingly. I didn’t bury my head in the sand for ten years, but I trusted that my oncologist would actually help me if she could, or send me to someone else who could. I mean, it’s Swedish healthcare. It’s supposed to be great. She didn’t however, because it wasn’t in her job description up until that point, in 2016/17. That is what she said when I confronted her, regarding why it had taken so long.

Nevertheless, at least I know the facts now. Without this depression, I would have never started to blog, never gotten in contact with the Maxa Livet-project, never gone to Lithuania for Youth Cancer Europe. I would be studying or working, until I got my next fatigue-episode and crashed. Now, I’m trying to adapt, to learn more about fatigue, what I can and can’t do.

Yet, it seems cruel that all survivors in a similar situation such as mine should find out in the manner that I did. I had a very severe depression; I never did hurt myself, but I was suicidal-in-thought for a while. All this happened to me because of ignorance, incompetence and a lack of transparency, lack of awareness.

If only there were some sort of network, with cables around entire nations, or even around the globe, through which journalists could broadcast audio… and if one dare to dream, audio, video and text via special devices that could display and reproduce these sounds. And then, you could have some sort of news on these devices, daily. Where important events and facts could be presented to the audience. As a means of public service. If only that existed…

As for my depression; a forest fire is devastating to the life living there, but afterwards, life is reshaped and flourishes. This is what happened to me. I burnt down to the ground and I’m trying to reshape, re-focus on what’s important. Rising from the ashes, as it were.

Cancer patient and YCE ambassador Kasia, from Poland, joined us at our latest annual meeting in Vilnius, Lithuania. In this interview, she tells us more about the issues around cancer treatment and lack of patient information in Poland, as well as the difficulties in accessing additional support from specialists in smaller towns away from the capital. Kasia is currently fundraising to pay for surgery in Germany as other therapies in her native Poland have so far not been successful. You can join Kasia’s fundraiser here http://rik.pl/katarzynawalinowicz/

 

Meet cancer survivors and YCE ambassadors Dusan and Milos. Both survivors of childhood cancer, in this video they discuss the lack of information available to young cancer patients in their native Serbia, as well as the stigma and misconceptions around cancer in society. Both Dusan and Milos represent the amazing Serbian childhood cancer organisation called MladiCe