Youth Cancer Europe will speak at the Economist’s 8th Annual World Cancer Series Europe, to be held in Brussels on 8-9th November 2022. More than 90 speakers will explore best-practice solutions to improving care and patient outcomes, aligned with the EU Beating Cancer Plan, identifying strategies to reduce inequities and encourage innovation through treatment and technology.
YCE’s Katie Rizvi will be joining the 8th November 10:25 am -11:05 am CET Panel “The future of European cancer control in a time of crisis”,speaking about our response to queries and requests of Ukrainian patients needing continued cancer therapy outside of the war-torn country. Please see the detailed Agenda here.
YCE members can register to attend free via the link below
With studies suggesting that between 40% and 80% of adult female cancer patients are at risk of becoming infertile and between 30% of male cancer patients may become sterile after treatment for cancer, increased survivorship means that the preservation of fertility is becoming an increasingly important topic for patients [Knapp, Caprice A., Gwendolyn P. Quinn, and Devin Murphy. “Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions.]. It’s also been suggested that fertility impairment might be considered one of the most life-altering late effects of cancer treatment, affecting the survivors’ body image, sexuality, dating relationships, marriage patterns and sense of wellbeing [Levine, Jennifer M., et al. “Fertility and Sexuality.” Paediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management (2015).].
However, despite Europe’s ageing population and an increasing consideration for European citizens’ right to build a family, awareness of this issue remains low and discussions linking fertility and cancer are not highly placed on the European Union’s political agenda. Considering the growing momentum in the field of cancer, we wonder why Europe’s Beating Cancer Plan does not reference fertility issues even once.
Following the objectives set out in our White Paper published in 2018, Youth Cancer Europe’s advocacy project focuses on building support & impacting policies through a EU Presidency contact programme, including meetings with the Permanent Representations and specific Members of the European Parliament as well as monitoring on-going legislative files and Council Conclusions/Parliamentary Actions.
After the publishing of the European Commission’s Beating Cancer Plan, we spoke up at the European Parliament’s BECA committee hearing. As a direct result, the Report on strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy (2020/2267(INI)) adopted in February 2022 by the European Parliament, for the first time, addressed topics that were completely ignored by the Beating Cancer Plan, such as fertility. In it, the European Parliament “calls on the Commission and the Member States to plan actions that promote, in the context of care and treatment, greater attention to the protection of patients’ fertility, in particular in the case of paediatric and juvenile cancers” & “strongly urges the Member States to ensure that all cancer patients are fully informed about the possibility of fertility preservation procedures prior to the start of active treatment; calls for the development of guidelines at EU level for health professionals, defining the age at which cancer patients should be informed about the availability of reproductive health procedures; encourages, furthermore, the Member States to make provision for all cancer patients covered by compulsory national health insurance to be reimbursed for such services by national health insurance schemes”
Youth Cancer Europe is also participating in three distinct thematic Stakeholder Contact Groups facilitated by the European Commission on Europe’s Beating Cancer Plan:
“Childhood Cancer” thematic group
“Quality of Life” thematic group
“Reducing inequalities” thematic group
In these contact groups YCE provides input to the Commission on the implementation of the Europe’s Beating Cancer Plan and the Horizon Europe Cancer Mission in areas under the remit of the thematic group. These groups will work in synergy with other already existing Commission stakeholder groups and consultation mechanisms.
Our research activities include evidence and gap mapping to assess currently accessible fertility presentation and fertility treatment options and costs across Europe, as well as an online survey and qualitative study to understand the lived experience of young adults with cancer regarding fertility preservation and fertility assistance and cancer survivors’ attitudes on building a family.
In 2022 YCE launched a Survey on Awareness and Accessibility to Fertility Preservation Procedures in Europe, to better understand young people’s awareness on fertility preservation and its relationship to quality of life and mental health. The respondents were over 600 cancer patients and survivors, aged 15 to 39 at diagnosis, recruited across a wide European region.
The study reveals that about 28 % cancer patients did not discuss medical options for fertility preservation with their healthcare provider, with the Eastern European Countries reporting the lowest rates of involvement in fertility discussions. Furthermore, respondents who were not informed about available fertility services reported the lowest quality of life, fertility-related concerns greatly impacting their level of anxiety and depression.
Based on our findings we can conclude the following:
within Europe, there are significant cancer-related fertility inequalities between countries and healthcare systems;
accessible fertility preservation programsshould become an integral part of cancer rehabilitationfor young people and they should be actively included in the development of any novel guidelines;
young people’s mental health and quality oflife may be compromisedby fertility-related distress and should be monitored throughout the cancer continuum.
Read more about the online survey methodology here.
As part of Youth Cancer Europe’s advocacy work, we joined the world’s largest international community of cancer experts at the Union for International Cancer Control (UICC) World Cancer Congress (WCC 2022) in Geneva, where YCE was invited to host a round table. In the session we discussed findings and clinical implications from the results of a pan-European survey of young people and presented novel evidence on FP access and awareness. Using a holistic and cross-sectoral approach, together with a group of experts, the session provided pragmatic, evidence-based, acceptable and scalable solutions to reduce cancer-related fertility inequalities among young people. Round table panellists included Dr. Richard Anderson Professor of Clinical Reproductive Science, University of Edinburgh; Max Williamson medical student at University of Oxford, BSc in Biomedical Sciences at UCL, patient advocate and representative for the NCRI Teenage and Young Adult/ Germ Cell Tumour Research Group; Katie Rizvi founder of Youth Cancer Europe; Dr Anja Borgmann-Staudt professor and medical doctor. The session was chaired by Dr Urška Košir, scientific advisor and advocate with Youth Cancer Europe, lecturer at the University of Oxford. YCE’s recorded session for the WCC 2022 can be watched in full above. 👆
Next up, in November, YCE’s Urška Košir will represent us at the ECO Summit 2022 in Brussels, speaking on fertility preservation and quality of life among adolescent and young adult cancer patients across Europe.
Fertility impairment prevention, fertility preservation and fertility treatment (including assisted reproduction) continue to be very high on YCE’s agenda and are topics YCE represents in many European and international networks and consortiums, such as ENTYAC and EU-funded projects StrongAYA and EU-CAYAS-NET
This project would not be possible without the generous support of YCE’s sponsors:
Inspiration Family is a charitable fund to support adult cancer patients in Ukraine.
Directions of the fund’s activity:
Systemic changes in the field of oncology
Emotional and informational support
Education about cancer
Who created the Inspiration Family?
Five ladies who underwent cancer treatment – Anna Uzlova, Daryna Brikaylo, Inessa Matyushenko, Yulia Balan, Mila Reutova.
We separately founded our own public organizations in 2017: Cancel/R, Soul Sisters and Kvant. We did small projects to support cancer patients, got acquainted and understood that we all want one thing – systemic changes in the country regarding oncology in Ukraine.
Named the association Inspiration Family, which in September 2020 became a fund to support adult cancer patients.
Support for cancer patients during the war.
We are currently working in the following areas:
We are collecting and providing up-to-date information on the work of oncology centers in Ukraine and the list of services they provide;
We are providing information on the receipt of humanitarian aid to specific oncology centers in Ukraine;
We are collecting information from foreign clinics and coordinate patients to continue treatment;
We are submitting requests for humanitarian aid.
On February 24, 2022, Russia started a war with Ukraine. Despite threats from Russia, we still did not believe that the war would begin. The entire population of Ukraine has landed in a difficult situation and many have been forced to escape from the country, but people with serious illnesses have been hit in the hardest manner. Nowadays, cancer patients need support more than ever, so we continue to work harder and help adult cancer patients in these difficult conditions.
First of all, we are looking for an opportunity to continue the treatment of cancer patients in Ukraine, to provide information about the work of oncology centers and the import of humanitarian aid. However, despite the fact that it is now possible to continue treatment in any oncology center in the country, regardless of the place of registration, not all patients are able to continue treatment in Ukraine due to lack of drugs, limited laboratory work, limited access to diagnostic procedures, radiation and surgery and provision of services.
Only in case we find out that the patient is not able to continue treatment in Ukraine, we recommend him to go abroad to continue treatment.
We are grateful to all countries and foreign clinics that provide assistance to Ukrainian cancer patients! You are saving the lives of our fellow citizens, relatives and friends and our nation will always be grateful to you!
Join us on May 18th for our War and Cancer webinar and listen to first-hand accounts of young people with cancer in Ukraine and what we do to help them. Register via this link Since Russia’s invasion of Ukraine on February 24th, Youth Cancer Europe has organised a coordinated response and helped hundreds of patients to find continued cancer treatment despite the war. With 1 in 3 households home to at least 1 person with a chronic condition and unable to secure medication and care in Ukraine, patient organisations like YCE and our Ukrainian partners, Inspiration Family, have become indispensable in cancer patients’ fight for survival. Join our webinar via Zoom to meet Ukrainian YCE members joining from Kyiv and Lviv. You will also hear from cancer patients who have crossed the border and now receive cancer therapy in other European countries, and meet our volunteers and the people on the ground who are supporting the coordination of this massive effort. You must register via this link to participate. Look forward to seeing you there!
ВІЙНА І РАК
Вебінар Youth Cancer Europe
Приєднуйтесь до нас 18 травня на нашому вебінарі «Війна та рак» та послухайте з перших вуст про онкохворих людей в Україні, а також про те, що ми робимо, щоб їм допомогти. Реєстрація через посилання. Після вторгнення Росії в Україну 24 лютого Youth Cancer Europe організувала скоординовану відповідь і допомогла сотням пацієнтів знайти варіанти продовжити лікування раку, незважаючи на війну. Оскільки щонайменше в третині сімей проживає принаймні одна людина з хронічним захворюванням, яка не може отримати ліки та допомогу в Україні, такі організації, як YCE та наші українські партнери Inspiration Family, стали незамінними помічниками в боротьбі онкохворих людей за виживання. Приєднуйтесь до нашого вебінару через Zoom, щоб познайомитися з українськими членами YCE, які приєднуються з Києва та Львова. Ви також познайомитеся з хворими на рак, які перетнули кордон і тепер отримують лікування раку в інших європейських країнах, а також із нашими волонтерами та людьми на місцях, які підтримують координацію цих масштабних зусиль. Вебінар проходитиме англійською мовою. Для участі необхідно зареєструватися за посилання. Чекаємо на вас там!
Since the war broke out in Ukraine on February 24th, YCE members, staff and volunteers have organised a coordinated response and operational support for cancer patients in the country.
We first met Inessa and Iulia when they attended YCE’s Leadership Summit in Budapest, one of our last face-to-face meetings before the Covid-19 pandemic began. Inessa and Iulia, together with other formidable cancer patients, have since set up Inspiration Family, one of the first patient organisations inside Ukraine to provide hands-on support for people with cancer affected by the war.
Russia invaded Ukraine on February 24th. YCE launched its crisis response on February 26th.
In 40 days, Youth Cancer Europe has responded to 207 cancer patients who need help accessing continued cancer treatment. Of those, 127 patients are now receiving therapy in hospitals in 16 countries across Europe.
Together with their families (totalling more than 400 people) they now have access to safe and appropriate housing, food and social care. Most importantly, they are treated with love, respect and dignity and are given a chance to live, to get better and to get the medical care they deserve.
However, many cancer patients are still trapped in high-conflict zones, unable to leave. Many of them are men between 18 and 60 years of age, who are yet to receive military exemption.
Out of those trapped in their communities, 16% say it is not safe for them to leave amid active hostilities, while 6% are staying in order not to leave family members behind. 3% also say that they would not know where to go.
Much of our efforts are therefore focused on information gathering and communication with Ukrainian cancer patients on the availability of free medical services and specific cancer medicines and/or therapies for Ukrainian refugees in different European countries, as well as advice on EU legislation, country-specific regulations and legal provisions, and assisting with registration processes in order to access health services. Inspiration Family’s Ukrainian Telegram channel, followed by nearly 3,000 people, also gives daily updates on local information and medicine availability for cancer patients.
While the EU has activated to the Temporary Protectionemergency mechanism to allow displaced persons to enjoy harmonised rights across the EU (including the right to residence, access to education for children, access to the labour market, housing and medical assistance) little else is done to ease the European-level coordination of chronically ill patients, including those with life-threatening diseases such as cancer.
In the face of glaring lacks of European-level information, data and most importantly, the lack of coordinated pathways, the contributions of NGOs, such as Inspiration Family and Youth Cancer Europe, remains crucial in solving the urgent needs of Ukrainian cancer patients.
According to the International Organization for Migration (IOM) of the United Nations, there are 7.1 million internally displaced persons in Ukraine and 4.3 million refugees have fled Ukraine. More than 50% of displaced households have children, 57% include older persons and 30% have people with chronic illnesses, including cancer.
With hostilities-related trauma and injuries on the rise, many hospitals have been repurposed to care for the wounded, leading to disruptions to basic and routine health services. Close to half of all pharmacies across the country are also thought to be closed, limiting access to essential medicines.
Since Russia’s invasion of Ukraine, over 1,000 health facilities have been affected. The World Health Organisation reported that it is now confirmed that well over a hundred of these were actively targeted by Russia.
The needs of cancer patients (and generally, the management of non-communicable diseases) only ranks 5th in the list of priorities established by the World Health Organisation (WHO) together with the Ukrainian government: behind conflict-related trauma and injuries; maternal and newborn health; food security and nutrition; and the risk of emergency and spread of infectious diseases. The list continues with technological hazards and health risks, mental health needs and the risk of human trafficking and the escalated risk or sexual and gender-based violence.
While our sincere wish for all cancer patients and Ukrainian refugees is to be able to return to their homeland and be able to rebuild their lives in safety and good health, we know that for many, for a considerable time to come, this will not be a reality.
We thank everyone who has supported our efforts so far and ask our readers to help us continue our work by sharing this email and our donation request for Youth Cancer Europe’s EMERGENCY CANCER FUND for UKRAINE.
Find out more about how you can support directly here.
To stay up to date with all things Youth Cancer Europe, make sure to subscribe to our newsletter here.#
❓ ДЕ можуть лікувати мій рак? В: Якщо для вашого типу раку існує ефективна терапія, ви точно зможете лікувати його в одній із європейських країн. Оскільки в Україні наразі недоступна безперервна онкологічна допомога, окрім екстрених випадків, в будь-якій точці Європи зараз є більше шансів знайти лікування, ніж в Україні. ⚠️ Першочергове завдання – потрапити в безпечне місце.
❓ Чи переведуть мене в онколікарню ОДРАЗУ, коли я перетну кордон? Відповідь: Ні. Якщо ви не потребуєте невідкладної медичної допомоги (в цьому випадку вас негайно доставлять до лікарні швидкої допомоги, а не до онкологічного центру), може минути декілька днів, перш ніж вас запишуть на прийом до онколога. ⚠️ Ось чому так важливо не їхати в останню хвилину, а варто робити це одразу, як тільки можете зробити це безпечно.
❓ Чи потрібно мені мати підтвердження від онкологічного центру, що вони можуть мене прийняти, ДО ТОГО, як я покину Україну? В: Ні. Ваша безпека найважливіша. ⚠️ Будь ласка, не витрачайте дорогоцінний час, чекаючи, доки лікарня відповість вам.
❓ Чи повинен я залишатися для лікування раку в тій країні, де я перетнув кордон? Відповідь: Ні. Після того, як ви перетнете кордон і прибудете до безпечного місця, ваші документи перевірять, вам нададуть їжу та притулок, і ми можемо допомогти вам і направити вас до найбільш підходящого онкологічного центру в цій країні (Польща, Словаччина, Угорщина, Румунія, Молдова) АБО ви можете проїхати транзитом через цю країну зеленими коридорами, спеціально створеними для українців (автомобілем, автобусом, потягом чи комерційними рейсами) і дістатися до бажаного пункту призначення.
❓ В яку країну мені поїхати? Відповідь: Перше і найважливіше – ви маєте потрапити до БЕЗПЕЧНОЇ країни. Після того, як ви приїдете до першої безпечної країни, ви можете або пройти там лікування, або поїхати далі в іншу країну. Іноді потрібно багато днів, щоб отримати підтвердження з лікарень або щоб знайти найбільш підходящий центр, якщо у вас дуже рідкісна пухлина. ⚠️ Будь ласка, не чекайте, доки увесь цей процес закінчиться, оскільки ви ризикуєте не мати можливості безпечно покинути Україну. Будь ласка, покиньте Україну якомога швидше, і коли ви будете в безпеці, ми зможемо обговорити з вами варіанти. Поки ви чекатимете, ви будете в безпеці в тимчасовому притулку або житлі.
❓ Чи доведеться мені платити за лікування раку? Відповідь: Механізм тимчасового захисту Європейського Союзу (Директива Ради 2001/55/EC) надає захищений статус, подібний до статусу біженців, у будь-якій країні ЄС, на один рік з можливістю поновлення для всіх громадян України, які були змушені втекти від війни після 24 лютого. Цей статус включає право на проживання, доступ до житла та освіти для дітей, право на роботу та медичну допомогу. Однак кожна країна має дещо різні внутрішні правила та процедури, і, ймовірно, чергу з власних громадян, які чекають діагностичних тестів та процедур через дворічні затримки, спричинені пандемією COVID. Через це багато європейських організацій зрозуміли, що в деяких випадках можуть знадобитися власні витрати, і створили ФОНДИ НАДЗВИЧАЙНОЇ ДОПОМОГИ, щоб допомогти пацієнтам оплачувати їх. Хоча ми не можемо нічого обіцяти чи гарантувати, важливо знати про ці потенційні можливості допомоги, якщо це необхідно. Ми можемо надати вам додаткову інформацію лише після того, як ви вирішите поїхати або якщо вже прибули до країни призначення. ⚠️ Будь ласка, не чекайте, поки у вас буде інформація з усіх країн і всіх можливих лікарень. Може знадобитися багато електронних листів, багато запитів, тож дорогоцінні дні можуть бути втрачені. Дістаньтесь до найближчої безпечної країни, і ми допоможемо вам звідти.
❓ WHERE can my cancer be treated? A: If there is effective therapy available for your cancer, for sure you will be able to get it treated in one of the European countries. Since there is no continued oncology care currently available in the Ukraine, except for emergencies, anywhere in Europe right now there is a better chance for finding treatment, than inside Ukraine. ⚠️ The first priority is to get somewhere safe.
❓ Will I be transferred to an oncology hospital IMMEDIATELY when I cross the border? A: No. Unless you have a medical emergency, in which case you will be immediately taken to an emergency hospital, not a cancer centre, it might take days before you will be given an appointment to see an oncologist. ⚠️ This is why it’s so important not to leave in the last minute, but as soon as you can safely do so.
❓ Do I need to have a confirmation from a cancer hospital that they can take me BEFORE I leave the Ukraine? A: No. Your safety is the most important. ⚠️ Please do not waste precious time by waiting for a hospital to get back to you.
❓ Do I have to stay for cancer treatment in the country where I crossed the border? A: No. Once you crossed the border and arrived to safety, your papers will be checked, you will be given food and shelter and we can help you and direct you either to the most suitable oncology centre in that country (Poland, Slovakia, Hungary, Romania, Moldova) OR you can transit that country through green corridors specially arranged for Ukrainians (with car, bus, train or commercial flights) and get to your desired destination.
➡️ If you already know which country you want to go to: we can help you recommend a hospital or can even put you in direct contact with a clinic or a doctor.
➡️ If you don’t know which country you want to go to AND you are willing to go anywhere: we can discuss the best options for you and help you get advice from a specialist network dealing with your specific tumour type.
❓ Which country should I go to? A: The first and most important thing is for you to get to a SAFE country. Once you reach the first safe country, you can either get treatment there or travel further to another country. It sometimes takes many days to get confirmations from hospitals or to find the best centre if you have a very rare tumour. ⚠️ Please do not wait for this process, as you might risk not being able to safely leave the Ukraine. Please leave the Ukraine as soon as possible and once you are safe, we can discuss options with you. While you wait, you will be safe in a temporary shelter or housing.
❓Will I have to pay for my cancer treatment? A: The European Union’s temporary protection mechanism (Council Directive 2001/55/EC) grants a protected status similar to that of refugees, in any EU country, for a renewable period of one year for all Ukrainian citizens who had to flee the war after the 24th or February. These rights include residence, access to housing and education for children, the right to work and medical assistance.
Each country, however, has slightly different internal rules and procedures, and presumably a backlog of their own citizens waiting for diagnostic tests and interventions due to two years of delays caused by the COVID pandemic.
Because of this, many European organisations have realised that in some cases out-of-pocket costs might be required, and have set up EMERGENCY FUNDS for helping patients pay for these. While we cannot promise or guarantee anything, it’s important to be aware of these potential avenues of help if needed.
We can only give you further information once you have decided or you have arrived in the country of your destination.
⚠️ Please do not wait until you have information from all the countries and all possible hospitals. This takes many emails, many enquiries and many precious days might be lost. Get to the nearest safe country and we will help you from there.