Policy Work Archives - Youth Cancer Europe (YCE)

This week, Youth Cancer Europe hosted its first of five events at the European Parliament in Brussels, Belgium, to call for EU-wide legislation to put an end to financial discrimination faced by cancer survivors across Europe, under the banner of the “Right To Be Forgotten”.

Cancer survivors are effectively hindered by institutions at both public and private level from resuming a normal life following their treatment, with young survivors the most impacted. When it comes to financial products, this means either being denied or having to pay top premium rates for access to insurance, bank loans or mortgages; even decades after being given the all-clear. Currently, only France provides legal rights for long-term cancer survivors to no longer inform insurers or loan agencies about their diagnosis after a period of ten years after their treatment has ended, or five years for anyone who was under 18 when they underwent treatment for cancer. By comparison, convicted criminals already have the legal right to not disclose their criminal record following a set number of years, after having served their sentence.

YCE’s call to end financial discrimination against cancer survivors, urging national governments and financial regulators across Europe to extend and implement those legal rights already established in France, is the first of five measures included in YCE’s multi-faceted white paper, which was presented to an audience of insurance industry representatives, medical associations, pharmaceutical industry representatives and other policy influencers. Also yesterday and in time with Youth Cancer Europe’s event, Belgium announced its commitment to pass legislation for the “Right To Be Forgotten” by the end of this year.

YCE was hosted at the European Parliament by Sirpa Pietikäinen (MEP) and Cristian-Silviu Busoi (MEP).

The white paper can be downloaded here.

“Cancer patients and survivors across Europe need to know that they’re not alone in this fight. 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, Youth Cancer Europe Chairman and Presidentof the Lithuanian Cancer Patient Coalition (POLA).

“YCE was born of the need to not only address the key issues affecting young cancer and survivors across the continent, but also to give them a voice and help them become an active part of how cancer treatment and life after it is shaped for generations to come. We have fought a long battle to get to the European Parliament today, but this is only the beginning of a brighter future for all. Paving the way for survivors to resume a normal life after cancer, free of discrimination is just the start of it and we won’t back down.”
Katie Rizvi, co-Founder and Executive Director of YCE

The event was followed by a networking reception where key stakeholders had the chance to meet YCE members, including young survivors and patients under active treatment from around the European Union.

In addition to the “Right To Be Forgotten”, YCE’s white paper addresses four other key issues affecting young cancer patients and survivors across Europe, including an increase in access to fertility preservation, mental health support, availability of dental and reconstructive surgery and improving access to cross-border health services.

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

Interviews with Katie Rizvi, Co-Founder and Executive Director of YCE, along with young cancer survivors who took part in our Fundamentals of EU Policy Making induction in Brussels.

In October, we will be back in Brussels to present the “Right to be Forgotten” provision, an important milestone in European policy making.

If you would like to join us at the event, or for more information please click here.

Patients can play an important part in policy making but it is important to come well prepared to a meeting. When defining your ask, make sure it is something your particular stakeholder can change.

Once you have defined your policy asks, it is important to also identify your stakeholders. Keep in mind that the most vocal stakeholder might not be the stakeholder with the most influence.

When developing your ask it is also important to not just be reactive to a policy that is debated in parliament. To be successful with your ask, it is important to meet early and to meet often to make stakeholders aware of the issue you are concerned with.

A stakeholder might agree to meet with you but if there is nothing they can do you will not have achieved your defined objective. When you work on a very specific technical detail of legislation the civil servants in a ministry might be the most appropriate person to work with instead of the minister directly. Also consider broadening your engagement with stakeholders and don’t just focus on healthcare related stakeholders.

For example, if you are asking for more funding for a specific cause it might be worthwhile to speak to the Ministry of Finance instead of the Ministry of Health as they will have the spending power.

When concluding a meeting with a stakeholder, always leave something behind such as a one-page document which summarises the key position you discussed.

Always make sure you follow up with your requests as your stakeholder will have many other meetings.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

Once you have defined your issue, it is important to identify the stakeholders you will want to address.

Understanding the policy environment in your country will help you to determine what your primary policy ask should be. For example, you can better understand the policy landscape by looking at bills currently discussed in the parliament.

When thinking about your issue, ask yourself whom are you seeking to influence? Your tactics should differ depending on your identified stakeholders. Identify the most appropriate stakeholders that care about your cause or will care about your cause in the future.

Different stakeholders have different concerns. For example the minister of health will have different concerns than a member of parliament.

Your issue may be very broad and appeal to a wide range of stakeholders. Sometimes your issue needs to be tailored to a particular stakeholder, such as member of parliament or a decision-maker in a ministry.

Ideally you should focus on just one ask to make sure that you are able to provide information, specific to this ask. Ensure your ask falls within that person’s remit and that they can take action.

Sometimes more junior civil servants might be more appropriate contacts than going directly to the minister of health. It is also important to think ahead in terms of election cycles and who can be your ally in the policy debate?

Lastly it is important to always follow up and keep track of your initiatives.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

As part of our continued policy work across the continent, Youth Cancer Europe recently participated as co-signatories of WECAN’s position paper on further EU integration of HTA (health technology assessment). The paper, which supports the European Commission’s legislative proposal for a regulation of the European Parliament and of the Council on health technology assessment and amending Directive 2011/24/EU, focuses on efforts to speed up the assessment process for new medicines and equitable access to new therapies, as well as proposing additional considerations for patient-centricity and patient engagement, transparency and accountability.

WECAN is an informal network of leaders of European cancer patient umbrella organisations, of which YCE is a member.

You can read and download the full paper, which was presented on 21 June 2018, on PDF here.

For more information about the WECAN network, please visit their website http://www.wecanadvocate.eu

Policymaking follows a clear and established route called the policy cycle. For you to make an impact, it is therefore important to understand the policy cycle in your country. There are typically many steps before a bill is introduced into parliament. It is here, where you can have a real impact.

The policy cycle starts with issue identification and often this task is performed by civil servants in ministries. At this level, you have the chance to talk to experts directly and have the most influence.

Alternative routes to agenda setting are conferences of political parties. Here, the parties will define their policy proposals for the years to come and you will be in direct contact with high-level policy makers.

Once you have established your issue, it is important to get your issue on the political agenda. Here, you can work with a variety of stakeholders you have identified earlier. These can be members of parliament but might also be other stakeholders that care about your cause.

Having established your issue on the political agenda, it is now also important find a member of parliament to support your issue. This person can then, for example, call you in as an expert to highlight your issue in the respective committee.

All policy proposals will stand or fail with their financing. A policy might be enacted but not financed. Therefore, identify the stakeholder that has spending power and make sure that person is onboard with your proposed solution.

Having passed all these steps, it is now important to follow the implementation of the policy and keep an eye on its implementation. This will make sure the policy is implemented as intended for the benefit of patients.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

In policymaking, it is important to note that high patient association participation does not necessarily equal high impact. There are a variety of tools available that will help you to achieve your desired outcome. These tools vary in their complexity and rigor. They will help evaluate criteria for achieving impact in particular settings. Amongst the most important are leadership, training & experience.

To achieve your goals, it is important to identify strong partners. In particular, this means the RIGHT partners for achieving your goals.

These can be supporters & influencers. Especially those who add credibility. It’s also important to consider potential ‘adversaries’ and think about how to involve them in your strategy. It is also important to think about how many partners are necessary to achieve your goal.

When thinking about building a coalition, you can either start a new coalition or start a collaboration. Ask yourself, whether it is possible to collaborate on a defined issue with existing groups?

Coalitions can be a powerful tool to achieve broader objectives, have greater credibility, and provide wider perspectives than a single person. Once you have found your partners and established your coalition, encouraging more information sharing will help each member to better understand each other’s unique roles. This in turn is helping to achieve better policy outcomes.

When meeting with stakeholders, underscore that patients are the experts in their beliefs, with their own values and preferences. Ensure that the “physical” dimension of care is not the only factor considered when talking to your stakeholders. Patient associations can ensure patient perspectives are integrated into policy-making and healthcare reforms, but also should ensure patient participation in hospital boards, clinical trial ethics committees, healthcare professional training programs or HTA analysis.

Successful partnerships are those that achieve real impact.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

Patients can play an important part in policy making but it is important to come well prepared to a meeting. When defining your ask, make sure it is something your particular stakeholder can change.

Once you have defined your policy asks, it is important to also identify your stakeholders. Keep in mind that the most vocal stakeholder might not be the stakeholder with the most influence.

When developing your ask it is also important to not just be reactive to a policy that is debated in parliament. To be successful with your ask, it is important to meet early and to meet often to make stakeholders aware of the issue you are concerned with.

A stakeholder might agree to meet with you but if there is nothing they can do you will not have achieved your defined objective. When you work on a very specific technical detail of legislation the civil servants in a ministry might be the most appropriate person to work with instead of the minister directly. Also consider broadening your engagement with stakeholders and don’t just focus on healthcare related stakeholders.

For example, if you are asking for more funding for a specific cause it might be worthwhile to speak to the Ministry of Finance instead of the Ministry of Health as they will have the spending power.

When concluding a meeting with a stakeholder, always leave something behind such as a one-page document which summarises the key position you discussed.

Always make sure you follow up with your requests as your stakeholder will have many other meetings.

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

We recently had the pleasure to meet Finnish MEP Sirpa Pietikäinen and the Head of Cabinet to the Commissioner for Health and Food Safety Arūnas Vinčiūnas for two of our main sessions as part of our Fundamentals of EU Policymaking week in Brussels, where participants had the chance to learn more about the key steps to successfully lobby for change in cancer treatment and after-care in their own territories.

Katie Rizvi, Co-Founder, YCE:

We have now had a four-day policy deep-dive, here in the heart of the European Union, Brussels, to learn about policymaking and to meet with many key stakeholders.”

Sarunas Narbutas, Co-Founder, Chairman, YCE:

“In order to better understand what we do, we took a 360-degree look into how stakeholders operate. And we didn’t just go there and observed what was happening. We engaged in discussions. We brought up new ideas and we forged new collaborations.”

Sirpa Pietikäinen, MEP, Finland:

“I am very excited about the power and the spirit of what you have. This is a very different kind of patient organisation. Existing patient organisations here in Europe are doing great work, but they are mostly focusing on prevention, medication and treatment of certain diseases. What I understand about your agenda is that it’s much broader, when it includes such things as the future of your finances, employment and many other issues that impact your life as a survivor.”

Jeremy Akhavi, Member, YCE:

“The highlight has been the in-depth look by the experts; you can read about it, you can watch videos on it, but you can’t actually ask questions. You can’t have these in-depth discussions about how everything works. And when you do understand how the inner workings of the European Union all work, that’s when you can finally implement policy changes. And that’s a huge part of what this division of Youth Cancer Europe is all about.”

Bradley Gudger, Member, YCE:

“Youth Cancer Europe have been very generous by putting us in front of the EU Health Commissioner’s team, as well as the different think-tanks. It’s been extraordinary to get to meet all these people and seeing how they listen to us.”

Arūnas Vinčiūnas, EU Commission:

“I think it’s hugely important for all our policy actions, whether legislative or non-legislative, that the voices of patients and all the stakeholders are the first thing we want to hear. They bring the issues to the table which we try to solve by listening to them. We want to listen to the people, to those who are involved in life, who face the problems… and that’s why your organisation is as important as any other.”

Countries represented at YCE’s Fundamentals of EU Policy Making included Austria, Belgium, Bulgaria, Czech Republic, Finland, Germany, Hungary, Lithuania, Poland, Portugal, Republic of Moldova, Romania, Serbia, Spain, Sweden and United Kingdom.

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

“We’ve seen through the enthusiastic faces in the room, through the outcomes that we managed to achieve in 8 hours with no structure but with everyone bringing up similar topics, sharing the similar visions that there are so many things that we can do jointly.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania
  • Lecturer on EU and International Law at Vilnius University
  • PhD Candidate (Networked Governance)
  • President of the Lithuanian Cancer Patient Society
  • Cancer survivor

“I believe meetings like this are important because it helps us get together with survivors from other countries and we can find out what issues other people face and what would be the solution on a European level.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think it’s very helpful to bring people together from across Europe to try and discuss the issues they are facing with cancer despite the differences we face in funding and medical care. And I think this really has helped and we have something we can hopefully build on.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Being in different groups through the meeting, I managed to talk with almost all the participants from the conference and this way we were able to see the problems that are around the whole of Europe Recommended Site. ”

Ana Amariutei – Romania

  • 12th grade student at Emil Racovita National College, Iasi
  • Patient support Volunteer with Little People Romania at the Sf. Maria Children’s
  • Emergency Hospital, Iasi
  • Cancer survivor

“I liked the fact that it was an open space summit and we had freedom to speak, freedom to what meeting we wanted. We could also raise our own issues and it was a very good way to get people together.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“Probably the most intriguing thing about this meeting was that it was an open summit, I never joined or participated in that king of meetings ever, so that was pretty impressive.”

Tomaz Dezelak – Slovenia

  • History and Theology Student at the University of Ljubljana
  • Author, The Other Me
  • Cancer survivor

“All the ideas were flowing, everybody was talking, everybody was discussing their own problems and their own issues and everybody was giving an opinion so it was a very productive day.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“I was very impressed by the level of knowledge and the ability to communicate it in a second language to most people. I couldn’t have done that in a foreign language, so I was very much blown away by that. But also the enthusiasm and the engagement everyone had throughout the day, despite the fact we all had very little sleep and too little coffee.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“My first reaction was not knowing what exactly was going to happen, I was a little bit afraid of the themes that were going to come up, what everybody is going to talk about, if they were really going to answer to my questions, what I was asking myself about, and I was pretty impressed to see that many people had the same questions as I had. Same themes came up that I was interested in and I was pretty impressed, I really liked it and I think it was really worthwhile coming.”

Francisco Mateos – Spain

  • Cofounder and board member of AAA – Asocoacion Espanola de Adolescentes y
  • Adultos jovenes con cancer
  • Volunteer Coordinator
  • Bachelor in Philosophy and student of Pedagogy
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

George Seremetakis – Greece

  • Double major graduate in Computer Science and Football Coaching
  • Vice-President of Kyttaro, Greek Organization of Adult Cancer Survivors
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor