How a pan-European cancer patient organisation is tackling a funding shortage while helping the wider community
The unprecedented impact of covid-19 on healthcare systems across the world has caused tremendous side effects. The impact has been felt not only on the immediate treatment of other diseases. Access to medicines and access to screening have been disrupted. The delivery of mental health services and psychosocial services has been disturbed, as well as much else. With the focus shifted towards coronavirus and the search for a vaccine, areas of healthcare not immediately related to the virus, as well as charities and patient organisations worldwide, have been heavily affected in the last three months by huge funding shortages that ultimately put new and future patients at increased risk.
With both these shortages and the threat of an economic recession looming, organisations across the world have had to be creative: launching new fundraising campaigns, reviewing operational expenses and providing new types of services to support their communities.
Youth Cancer Europe (YCE), is a patient group made up of several thousand young cancer survivors aged 18-39 from across Europe, with its members representing half a million young people affected by cancer from 31 different countries. As self-isolation is one of the key stages in the treatment of most cancer patients (when their immune system becomes compromised), we have a large community of experts who are no strangers to what is slowly becoming the so-called “new normal.”
Our recent activities include encouraging our community to create a series of online videos which provide “Top Tips From The Experts” to help people cope with the lockdown. The idea was spearheaded by one of our most active members, Bradley Gudger, a chronic myeloid leukemia survivor who is also a youth expert advisor for the UK’s NHS.
Staying connected with others, helped him, and he believes, helps others when they’re feeling alone and vulnerable. “It takes five seconds to pick up the phone and say how are you; but at the same time I don’t expect anyone to feel like they have to respond—simply sending a message already shows that you’re there for them if they need someone to talk to. If they don’t feel like talking back, that’s also fine too, but it’s important for people to know that they don’t have to do something if they don’t feel like it,” he says.
We shared the tips our young patient advocates provided across our social media presence, and they were accompanied by illustrations by Andrea Ruano, an Ewing sarcoma (rare type of bone cancer) survivor from Spain who works as a professional graphic designer and is a member of YCE’s communications team. The UK’s Metro newspaper ran a story on Andrea’s lockdown routine and her views on the value of diving back into an old passion or discovering a new hobby. In her case, it was embroidery which related to her own cancer diagnosis.
Emi Schipor is a 26-year-old testicular cancer survivor from Romania and a member of YCE’s steering committee. He dealt with the isolation of his cancer experience through gaming, becoming an active member of online gaming communities. He is now using that experience, along with the extra time currently spent at home during lockdown, to explore new ways to fundraise for Youth Cancer Europe through online gaming.
Emi began the process by gathering Romania’s biggest gaming influencers for a charity event hosted via Twitch (a popular live streaming platform with a heavy focus on video games) to raise funds for Asociatia Little People, a Romanian childhood cancer charity (of which Emi is also a member). Emi is now organising an eSports charity tournament for both eSports teams and solo players which will be focused on raising funds for Youth Cancer Europe.
While the spread of covid-19 has brought about huge and unexpected challenges from a healthcare perspective, this doesn’t make cancer (or any other disease) go away. And as long as cancer is here, so are we—to help shape European policy, collaborate in and promote research, fight for better access to care, better treatments, better conditions and to help fix the disparities that exist across the continent for young people fighting the disease, as well as looking at socio-economic aspects such as returning to school or work and healthy life years after cancer.
These new challenges also open up new possibilities, and we will continue to face these head on not only for our cancer community, but for the benefit of all.
Katie Rizvi, CEO, Youth Cancer Europe.
Competing interests: None declared
You can find out more about Youth Cancer Europe via their website. YCE members are also regularly sharing their top tips for dealing with self-isolation on the organisation’s Facebook, Twitter and Instagram feeds.