Our Co-Founder and CEO Katie Rizvi, recently spoke to healthcare and public affairs specialist Anna Dé for the latest edition of HEALTH POLICY TALKS, which features interviews with the movers and shakers on European health policy matters. You can read the full chat below, which focuses on YCE’s policy properties and our recent event at the European Parliament to launch our white paper.
This interview originally ran in Anna Dé’s HEALTH POLICY TALKS website, which you can visit here.
First of all, tell us about Youth Cancer Europe (YCE). What work do you do? What are your objectives?
YCE brings together thousands of young cancer survivors, aged 18-39 from all over Europe to change attitudes and the lived experience for young people fighting cancer across the continent. Our mission is 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 around the continent for young people living with cancer.
What are your EU policy priorities? How do you engage with the EU institutions?
Earlier this year we drafted our white paper, which we launched at the EU Parliament in October and which addresses five key issues for young people living cancer, and the necessary steps to tackle those issues at policy level. These include financial discrimination for cancer survivors, access to fertility preservation, mental health support during and after cancer treatment, availability of dental and reconstructive surgery and improving access to cross-border health services. We are addressing one issue at a time as part of a long-term plan to see tangible policies implemented in the EU, as well as in European countries beyond its borders where we also have representation. In order to engage with EU institutions, we have aligned MEPs close to our call who have hosted us at the European Parliament to present our proposals to the relevant stakeholders, including insurance industry representatives, researchers, public officials and fellow patient organisations.
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 country 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 policy level is simply to highlight existing best-practices that are working at the country level and see if they have potential to scale 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 work with our natural allies from other patient organisations, healthcare professional societies and researchers to initiate pilots for change in health policy and practice.
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.
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 country 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 other European Member States. Belgium has already committed to implement 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.
What are your key policy activities for 2019?
Throughout 2019 and beyond we will be pushing for policies to be implemented across the continent in response to the five key issues we’ve highlighted in our white paper. This is a mid-to-long term, five to seven years plan that will take us into 2025 and will be the main focus of our work, during which we will continue to engage with EU institutions as well as with national governments to ensure that change is achieved for cancer patients and survivors. Next year our particular focus is on cross-border access issues and fertility preservation before cancer therapy, and for this we will return to the European Parliament to build a momentum not just for further discussion, but for low-cost solutions that are within reach.
What would overarching policy success in Europe look like to you?
At YCE we want to see a unified Europe, which for cancer patients and survivors would mean that the outcome of a diagnosis doesn’t have to depend on what European country they were born in or currently reside in. That, for us, is part of the sign of a truly unified continent, working together for the benefit of its people and, in this case, those in a vulnerable situation.