Working Together To Create Better EU Legislation for Patients
Vital Options presents Advocacy in Action (AIA), in partnership with the ESMO Cancer Patient Working Group and in collaboration with the ECCO Patient Advisory Committee. This six-part AIA Forum brings together influential leaders in cancer advocacy, to address the core issues that impact cancer survivorship.
Joining Vital Options CEO, Selma Schimmel, will be AiA co-chair Lorenz Jost, Chair of the ESMO Cancer Patient Working Group, joined by co-moderators Stella Kyriakides, Chair of ECCO Patient Advisory Committee and Europa Donna; Cora Honing, European Cancer Leagues (Dutch Cancer Society); Louis Denis, Europa Uomo; Richard Sullivan, Eurocancercoms PatientView Survey; Francesco De Lorenzo, European Cancer Patient Coalition; and Jan Geissler of CML Advocates Network. Special guest, ESMO President David Kerr, will join leading patient advocates across disease areas in this vital discussion for the European and international cancer patient community.
For more information on ESMO Guides for Patients, CLICK HERE.
Advocacy in Action at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:
VIDEO TRANSCRIPT
Selma Schimmel, Founder & CEO, Vital Options International:
The first question that we’re going to take on is how can medical professionals and patients contribute to better EU legislation for social protection for cancer patients in the areas of employment and access to financial services such as insurance, and what is the impact of global financial crisis that we’re facing on the health sector? And Cora, I’m going to start with you, give your title. I’m hoping that what you can do is explain to us the major issues facing cancer survivors, which have to be addressed if we’re going to improve quality of life.
Cora Honing, International Relations Officer, Dutch Cancer Leagues:
First of all I would like to thank you for the invitation to join you in this meeting, and having the opportunity to share the outcomes and the issues we have met in the EU Parliament two weeks ago. As you are all aware a substantial number of cancer patients and survivors experience problems at their work place. Although they are willing to return to work problems as colleagues who have overtaken their work during their absence, prejudices of employers, employees, and managers, colleagues because they think of risk of recurrence and that affects their behavior – physical and/or mentally – perhaps patients were not capable of doing their work due to cancer; it’s one of the ideas. And some are thinking that cancer patients are less reliable employees. Therefore their options for returning to full time or part time employment are often limited or denied, and that leads to financial decline in the family, risk of being pushed aside from the labor market, especially in this period of financial crisis that’s a real threat, and for patients themselves, diminished feelings of self-worth.
To diminish these problems first of all we think that it’s necessary that patients are better informed about their rights. But on the other hand, colleagues, managers, employers have to be informed as well, better informed because they have to get a more realistic view of the capacities of cancer patients. And last but not least, better legislation that gives cancer patients and survivors social protection as employees. During the continuing cancer care conference that was organized by the ECL at the EU Parliament on the 7th and 8th of September, which was hosted by the MEP in Iceland, we wanted to get this topic on the agenda of the EU Parliament, creating awareness. But we do not only want to create awareness we wanted to call the MEP to action with our declaration of support for our cancer patients.
In our call to action to the MEP’s we asked to work to extent end anti-discrimination legislation to people with increased risk such as cancer patients. And in the declaration we stated that we call for at a minimum a definition of disability as set out by the UN convention on the rights of people with disabilities to be implemented in all member states and applied to all existing and proposed EU anti-discrimination legislation. During the meeting, already nine MEPs signed the declaration and we are now talking with the office of Iceland to look what next steps have to be taken, and my question to this audience is, in which way could we collaborate with each other to enhance and accelerate the legislation when it comes to work and cancer patients?
Selma Schimmel:
Before we go to a more group discussion I want to go to Stella for a moment – and the perspective obviously there’s a political issue at hand here. So if you could please address the political issue and also the impact of the current financial crisis on cancer survivorship.
Stella Kyriakides, President, Europa Donna, Cyprus:
I think that there’s a major, major issue at the moment that touches on the aspects that have to do with survivorship because we are now facing very many different realities at the European level. The global financial crisis has impacted in every way of life. In fact, to increase what we are looking at and have seen in the past is health and equalities – not only across EU member states but within EU member states. We all know that health is determined by very many variables and the new concept that the EU commission is looking at in fact is this social aspect of health where everything to do with the environment that an individual lives in, the actual impacts on their way of life, and their disease risks and their mobility. And of course cancer patients are greatly affected by what is happening in Europe at the moment in the economic sector because it is serving to increase the disparities that we see between countries and within countries in the way that long term survivors are treated.
Having said that I, as a patient advocate, think that we are in an extremely fortunate position to be actually talking about survivorship. I think that it is important that we are able to be worried about these issues that we have to be concerned about cancer patients going back to work, living for many, many years after their disease experience, and I think that this is the positive aspect of where we are moving in terms of treatment for cancer. But because this is a very new area – and there are different issues coming up all the time – that have to do with insurance, that have to do with access to medicine, that have to do with palliation, that have to do with their rights and the way that they’re seen. I firmly believe that this is our role as patient advocates to help legislators, and to help those who are going to make these decisions understand what the issues are. And this can only be done if patient advocates are like we are here today, sitting around the table, and able to share what it does mean in terms of long-term survivorship effect of a cancer patient.
I think that the major issue that we have to integrate with survivorship questions, international cancer plans – I know we’re going to be discussing this – because I think that then we are going to be able to prioritize, we’re going to be able to look at how we’re going to use funds, we’re going to be able to look at what legislation we need in order to be able to safeguard the patients that are living for many years after their cancer experience.
I do not think that European Union has all the answers yet but I think that that is what we’re there for, in order to help move it towards legislation that will protect the patients.
Francesco De Lorenzo, Board Member, European Cancer Patient Coalition:
We feel that the social problems for cancer survivors is a crucial question. We feel that we should push on these to European Parliament. It would be nice also to see how each country up to now did on this field. In Italy we were able to lobby for this, and we succeeded it to get a very excellent legislation because since 2003 we succeeded to get special legislation for cancer patients, giving to them the opportunity to go from full time to part time as they decide. Once they are over the treatment for a while they are in the treatment but they are in the condition to go back to work. And we succeeded to get three years ago another important law that allows cancer patient relatives to have a priority in going in part time and to take care of their relatives. So I think that if we find out how things have been done and we were thinking to do this survey in… we discuss this in our board we were trying to look at each legislation of each country and see which country needs some law on this that could help it and also the European Parliament to get support from the national legislations. So it would be nice if we started doing this and then have all together a position to push European Parliament to work on this. But if there are already national legislation this could help a lot.
Rachel Giles, Chari, Dutch VHL Association:
And I’d like to point out, in response to some of the questions that Stella raised, in the Netherlands there has been a move – especially among the hereditary cancer syndromes – to organize this standard of care that is accepted by the insurance agencies – the psychosocial caregivers, the patient organizations, and the specialists that’re involved – so the organizations and the specialists. This is a document that of course is quite labor intensive. However once this is administered and submitted to the Ministry of Health the idea is to get a standard essentially, of how we can approach each of these problems. This will be, of course, relevant for general patients, cancer patients that have individual cancer experiences. In these families it’s very relevant because they have multiple tumor experiences over the course of one lifetime, and oftentimes you have four patients, five patients, ten patients in one family.
END OF VIDEO