Q3. How do you work with countries? Are there any country best practices that you would like to highlight?
Absolutely. We take a close look at how different European countries tackle certain aspects of cancer treatment and after-care, and ensure that those with best practices become examples for everybody else to follow. At our recent European Parliament event we highlighted how, for instance, France is the only EU Member State with a law in place to protect cancer survivors against financial discrimination. We used this as a blueprint to push for similar legislation in other EU Member States, after which a number of UK MPs and relevant financial industry bodies joined the conversation. Our modus operandi on a policy level is simply to highlight existing best practices that are working at the national level and see if they have the potential to scale up in other European countries. Not all proposals demand coordination at EU level and not all of the solutions depend on public officials. We are committed to working with our natural allies from other patient organisations, healthcare professional societies and researchers to initiate pilots for change in health policy and practice.
Q4. How do you involve young people with cancer in your activities?
All our members are young people with cancer. They set the agenda, drive the organisation and of course sit on the Steering Committee. They are highly proactive cancer activists in their own countries. To this day, most countries don’t offer age-appropriate treatment for many young people affected by cancer, and by involving them in the conversation we can ensure that their experiences will help shape cancer treatment and after-care for future generations. Having tackled the disease and seeing how it affects their lives following treatment, our young cancer survivors are effectively a community of technical experts who are willing to be an active part of this movement.
Q5. Tell us about the Youth Cancer Europe (YCE) meeting on The right to be Forgotten for Cancer Survivors that took place on 17th October 2018 in the European Parliament. I understand that cancer survivors are often disadvantaged for life when applying for essential services such as loans, mortgages and travel insurance?
The “Right To Be Forgotten” was the first of five events which we’ll be hosting at the European Parliament over the next few years to address each of the five key issues laid out in our white paper. The first event, as you’ve pointed out, focused on the issue of financial discrimination against cancer survivors, which across most European countries is harsher than against convicted criminals. As a result, we’re seeing cancer survivors either being denied or charged exorbitant premiums for access to health or travel insurance, bank loans or mortgages, even decades after their diagnosis. This effectively hinders the chance for survivors to resume a normal life after cancer, with young people the most impacted. As mentioned earlier, France is currently the only EU Member State with a law in place protecting cancer survivors against this, freeing them from the legal obligation to disclose their cancer history ten years after being given the all-clear, or five years if they were treated while still under 18. We used this as an example to push for similar legislation in the other European Member States. Belgium has already committed to implementing this by the end of this year, while other countries are gradually starting to join the conversation, most notably the UK where we’re talking to MPs and the ABI (Association of British Insurers) about the issue. And this is only the beginning.