35th ESMO Congress, 8–12 October 2010, Milan
ECCO’s Patient Advisory Committee:
Peter Goodwin – ecancer broadcaster and facilitator
Ellen Verschuur – Europa Donna
Stella Kyriakides – Europa Donna
Tom Hudson – Europa Uomo
Anita Waldmann – Myeloma Euronet
Gerlind Bode – ICCCPO Europe
Kathy Oliver – International Brain Tumour Alliance
Jan Geissler – Leukämie-Online
Media reporting of cancer
PG: Hello, and welcome to ecancer.tv. We have here, assembled in Milan at the ESMO conference, a rare collection of experts, not medical experts as such but people who have real experience of patients with cancer and I’d like to introduce you to some of them. Let me start. Ellen Verschuur, you’re with Europa Donna, could you tell me a little bit about that organisation? Tell us first of all who you are and what you do, very, very briefly.
EV: I’m Ellen Verschuur, I’m from the Netherlands and I am, by profession, a lawyer. I got into cancer patient advocacy when I was diagnosed with breast cancer ten years ago and I made a career in the breast cancer advocacy world. I’m the current President of Europa Donna, which is the European Breast Cancer Coalition and we are fighting for the best practice for every woman in Europe.
PG: So communication is really important to you?
EV: Yes.
PG: And what we’re talking about tonight is the media, how you communicate about cancer, the best ways to use all of the media available. Of course today media does not just mean radio, TV and the press, it means social media, Facebook, Twitter, you name it. Now Stella Kyriakides, you’re also from Europa Donna but the Cyprus version of it. Tell us a little bit about yourself please?
SK: I’m, by profession, a clinical psychologist; I’m currently a member of Parliament in Cyprus. I’m a breast cancer survivor, I was diagnosed in 1996 and 2004 and have been involved in breast cancer advocacy for the last ten years. We founded Europa Donna in Cyprus believing that we needed to form an organisation, we’re part of the European Breast Cancer Coalition, in order to spread the voice and break the silence about a disease that was not spoken about in our country. So, using the media is very important.
PG: Breast cancer is a very, very crucial disease but Tom Hudson, you are talking about men’s cancers because you represent Men Against Cancer. Tell us a little bit about what you’re doing.
TH: I also represent Europa Uomo which is, we use the phrase the little brother of Europa Donna. The reason is that women, many years before us, did something sensible about breast cancer and men just stood around with their hands in their pockets doing very little or nothing. Eventually we plucked up the courage, we followed the ladies’ lead and we formed Europa Uomo.
PG: And Anita Waldmann, you’re concerned with the Myeloma Euronet. Tell me a little bit about the work, what do you do in Myeloma Euronet as far as helping patients to understand cancer, and the public?
AW: We try to bring more awareness also for the disease because we found out that many people don’t know about myeloma; they mix up this disease with melanoma and we even have this experience by physicians. So we have to make a lot of awareness campaigns to inform not only patients but also other scientific areas like rheumatism or orthopaedics because many of our patients have a delayed diagnosis.
PG: So communicating in all the different ways is important, it’s crucial to you in fact.
AW: All the different ways, yes. And the best thing is we have our website in twelve languages in total so everybody can use their own language.
PG: Now Gerlind Bode, you’re working with ICCCPO, tell me about ICCCPO.
GB: ICCCPO actually is the International Organisation for Childhood Cancer for children with cancer and specifically for the parents of those children because the parents are the advocates of the children. So we are taking care of the kids, the teenagers and the young adults with paediatric cancers. It’s the international organisation but we also have a strong relationship with all the European groups.
PG: So you are helping parents and all the groups all over the world dealing with parents and helping them to learn how best to help their own children who have cancer.
GB: That’s right.
PG: Kathy, tell us a little bit about what you’re doing with the International Brain Tumour Alliance.
KO: Well the International Brain Tumour Alliance is a coalition of brain tumour patient support groups from all over the world but we also involve clinicians, researchers, nurses, anybody working in the field of brain tumours. We are actually a rare cancer and so we have to work internationally to combine as many patient groups as we can to work for change and greater awareness-raising. Media is extremely important to us because of the rarity of our cancer and because people are so spread out. We need to have online information available for them very readily.
PG: And Jan Geissler, you are a former patient with CML, you have chronic myeloid leukaemia, you’ve done a lot of organisation in this area. Tell me a little bit about the work you’re doing in patient advocacy.
JG: When I was diagnosed with leukaemia nine years ago, there was hardly any information about new treatments coming up. So I was actually, over the weekend, starting a blog about new treatments and I translated that into German because there was hardly any information in German. So I started that long before people were really talking about blogs and about social media, and that later on led to the co-foundation of the CML Advocates Network which is now a global network in the virtual internet platform about connecting CML groups worldwide.