MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
MPNCEE 2017
Melanoma
in Central and Eastern EuropE
A chance to live for all, not a privilege for few.
23rd- 25th June 2017
Hotel Dubrovnik, Gajeva ul.1, 10000 Zagreb, Croatia
When survival depends on access
to life-saving innovation
Living wellwith
Melanoma.
Walk the talk.
Prevention is the best cure. Early detection in Melanoma.
Program
Last update 19th June 2017 BR
PROGRAM
Version 18th June 2017
Friday, 23rd June
Afternoon
Opportunity- extra sign-up required
14.00- 15.00
Introduction to Dermoscopy
Zrinjka Pastar
Conference Opening Session
16.00- 16.30
Welcome to MPNCEE2017!
Zrinjka Pastar, Croatia
Introduction to the conference
Bettina Ryll, MPNE
MPNCEE- Melanoma in Central and Eastern Europe
Violeta Astratinei, MPNE
16.30 -18.30 Melanoma explained
Bettina Ryll, Violeta Astratinei und Gilly Spurrier, MPNE
18.30- 19.00
From Denial to Denali.
Fredrik Östman, Sweden
19.15- 20.00
MEET YOUR COLLEAGUES
Reception
20.00 Welcome Dinner
Saturday, 24th June
9.00- 10.30
Session 1 Understanding the problem: accessing life-saving medicines in Melanoma
1.1 The fight for access to effective medicines in Melanoma - the CEE experience
Violeta Astratinei, MPNE
1.2 Treating Melanoma patients from abroad.
Antonella Romanini, Italy
1.3 Mapping disparities in Melanoma in Europe
Lidjia Sekulovic, Serbia
1.4 Benchmarking/ indicators to monitor progress in access
Ana-Maria Forsea, Romania
Further reading
More than 5000 patients with metastatic melanoma in Europe per year do not have access to recommended first-line innovative treatments- http://www.ejcancer.com/article/S0959-8049(17)30069-2/abstract
Video on access to Melanoma drugs
10.30-11.00 Coffee break
11.00- 12.30
Session 2 Health economics in CEE
Central and Eastern Europe faces particular challenges when it comes to the financing health care. This session will provide an introduction on how to first measure the burden of cancer, how to evaluate the benefit of potential new therapies by Health Technology Assessment bodies and insurers and address specific challenges of the region.
2.1 The crisis of cancer medicines in the region.
Vlad Voiculescu, former Minster of Health, Romania
2.2 EUnetHTA and CEE
Mirjana Huić, EUnetHTA and Agency for Quality and Accreditation in Health Care and Social Welfare, Croatia
2.3 Health Technology Assessment- the Romanian experience
Vlad Mixich, former Health Ministry, Romania
2.4 The value of early detection.
Early detection spares patients enormous suffering and is both cost- effective as well as potentially cost-saving. Piotr Rutkowski, Warsaw, Poland
Further reading
Interactive map about the burden of non-communicable disease, including cancer, demonstrating the high need for functioning healthcare systems in CEE:
https://public.tableau.com/profile/willistowerswatson#!/vizhome/GlobalBurdenofNon-communicableDisease/GBD2015_1
Please note that as always, the reliability of the data depends on the quality of the underlying data sources such as registries!
Cancer Registries- what makes a good Cancer Registry? Basic principles, recommendations and quality measures from a training course of the European Network of Cancer Registries:
http://encr.eu/index.php/activities/courses
12.30- 14.00 Lunch
14.00- 15.30
Session 3 Action for better access to medicines in Melanoma
The political environment influences access to innovative therapies. How can policy and advocacy action help to gain access for desperate patients in diseases like Melanoma?
3.1 Treating Melanoma patients with innovative medicines in CEE.
Piotr Rutkowski, Warsaw, Poland
3.2 Action for Access to effective cancer therapies.
Vlad Voiculescu, former Minster of Health, Romania
3.3 Advocating for access
Tamas Berekzky, EATG, Hungary
3.4 Credibility in patient advocacy
Sarunas Narbutas, POLA, Lithuania
Further reading
Benefit of clinical trials to society
15.30- 16.00 Coffee break
16.00- 19.00
Workshop
Successfully advocating for patients in Central and Eastern Europe.
Patients increasingly demand participation in healthcare-decision making, also in CEE. The impact depends on the level of knowledge, making capacity- building a top priority. Can programs used in other parts of the EU simply be transferred or do they need adaptation for the region? If yes, in which sense?
Tamas Bereczky, EATG, Hungary
Sarunas Narbutas, POLA, Lithuania
20.30 Conference Dinner
Sunday, 25th June
please do not forget to check out from the hotel!
9.00 -10.30
Session 4 Prevention is the best cure. Early detection in Melanoma
No one chooses a Melanoma diagnosis. So what can we do to prevent and failing that, detect it as early as possible? And how can we ensure our healthcare systems are effective enough to deliver that type of prevention?
4.1 Challenges in Prevention & Early detection with examples of successful early detection actions in CEE
Zrinjka Pastar, Croatia
4.2 Vitamin D - a new intervention?
Ana Ljevar, Croatia
4.3 ‘You can’t escape your skin. Get it checked!’ This 2017 Macedonian campaign.
Biba Dodeva, Borka, Macedonia
4.4 Group discussion
How do we know that our campaigns are successful?
10.30- 11.00 Coffee break
11.00- 12.30
Session 5 Living well with Melanoma
Fortunately for us, the number of Melanoma survivors is constantly rising, also in CEE. Good management of side effects, attention to overall Quality of Life and the necessary support therefore become important that Melanoma patients not only live, but also live well.
5.1 What patient forums tell us- quality of life, side effects and how to cope with Melanoma.
Bettina Ryll and Violeta Astratinei, MPNE
5.2 Reporting side-effects- what can we learn from direct patient reports?
Adriana Andrić from Halmed, Croatia
5.3 Social support and palliative care
Nikolina Nizic, Croatia
5.4 Group discussion
What can we as network do to ensure Melanoma patients live well?
12.30- 13.00
Summary and conference closure
Zrinjka Pastar and Bettina Ryll
13.00 Lunch and departure
Looking forward to seeing you all in Zagreb!
Bettina, Violeta and Zrinjka
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Melanoma Patient Network Europe @ 2013