11th- 13th October 2019
Skeppet Ärans Väg 23, Nya Varvet, 426 71 Västra Frölunda
version 16th September 2019
Work in progress
Friday, 11th October
Nordics hubs meeting (arrival the evening before)
13.30- 14.30 Melanoma QuickStart
14.30- 15.30 Coffee and registration
15.30- 17.00 We in the Nordics opening session
Welcome to Gothenburg and motivation for the first Nordic Melanoma patient conference
MPNE nordics steering committee
The latest from ESMO 2019
ESMO is the largest European cancer congress and members of our network attend every year. We expect several Melanoma updates- and we'll share the most important ones here!
Bettina Ryll and Fredrik Östman, MPNE
17.00- 18.30 How novel medicines reach Melanoma patients- Sweden in focus
Novel therapies have turned advanced Melanoma from a disease with no hope to one where survival is a real possibility. Due to their high cost, the introduction of these novel therapies was however not without challenges and timely access to new therapies has been one of our biggest concerns in Melanoma.
Most countries try to use their resources so that the largest number of people has the highest possible benefit. Countries therefore assess new medicines and therapies, also called 'Health Technologies' for their value and cost-effectiveness ('value for money'). That assessment helps to decide whether a new therapy is covered by the national health insurance- or not.
The way medicines are assessed and how that assessment is taken into account differs from country to country- so in this year's session, we will start with the Swedish example.
At the same time, collaboration between different HTA bodies is already increasing and comes with the hope that this translates into faster and more equal access to new medicines for patients. Finland, Norway and Sweden have already started a collaborative project- FINOSE- so what will that mean for patients in the Nordics?
- What is HTA- Health Technology Assessment?
- Why do it?
- Discuss concepts like value and opportunity cost
- HTA collaboration between different countries
- and where is the patient in all this?
Introduction: how novel medicines reach patients- the general principle in 2 min
Fredrik Östman, MPNE
Health Technology Assessment in Sweden
Jan Liliemark, SBU, confirmed
Niklas Hedberg, TLV, invited
Health Technology Assessment in the Nordics
19.00 Welcome reception and Dinner
Saturday, 12th October
9.00- 10.30 Session 1a: The latest Melanoma development: adjuvant treatment- and the very latest: neo-adjuvant treatment.
What does it mean? What does the data say? Which therapies are approved and which are reimbursed? And what is happening in the neo-adjuvant setting?
Adjuvant therapy in Melanoma
Ana Carneiro, Lund University, invited
Access to adjuvant therapies in the Nordics
Tone Skajaa Rye, invited
Adjuvant versus neo-adjuvant Melanoma treatment
Judith Versluis, NKI, Amsterdam, Netherlands, confirmed
The latest approvals for Melanoma treatment were in the adjuvant setting for patients with Stage 3 disease. Now, neo-adjuvant treatments are also tested. Find out what we know about adjuvant treatments so far and how neo-adjuvant treatment differs.
Further reading on neo-adjuvant therapies
9.00- 10.30 Session 1b: Melanoma of the Eye- treating Uveal Melanoma (focus on the primary tumour)
chair Erik Näsman
An introduction to ocular Melanoma (anatomy, different types of ocular Melanoma and their differences)
Clinical Management of the primary tumour
Charlotta All-Eriksson, invited
Risk stratification: who will progress?
The importance of surveillance
10.30- 11.00 Coffee
11.00- 12.30 Session 3: Challenging situations in Melanoma- treating when evidence is scarce
When therapies fail patients- a patient perspective
Kristian Øye, Norway
Marius Normann, Norway, invited
Best standard of care
Lisbet Rosenkrantz Hölmich, Copenhagen University, invited
A topic often discussed on patient forums- can I influence my response to immune therapy by what I eat?
Max Levin, Gothenberg University, invited
11.00- 12.30 Parallel session: metastatic ocular Melanoma
Liver-directed therapies in uveal Melanoma
Ana Carneiro, Lund University, invited
HER2-CART in uveal Melanoma
12.40- 13.50 Lunch
14.00- 14.30 Melanoma & Men- journal club
Why do men with Melanoma seem to do worse?
Göran Jönsson, Lund, Sweden, invited
14.30- 16.00 Access to treatment
Accessing clinical trials abroad
Eric Näsman, MPNE, confirmed
Access to clinical trials abroad- the Danish example
Access to clinical trials abroad- the Norwegian example
16.00- 16.30 Coffee and CAKE 🍰and find your group
Country-specific Group activity
17.00- 17.45 'Have a Margarita with your oncologist' with Gil Morgan
Back after the success at MPNE 2018- have a margarita with your oncologist.
Good communication between patients and their medical team is critical for high quality care.
We felt that the current way of dealing with the challenge- patients attending workshops 'how to get the most out of your oncologist' and oncologist attending workshops 'how to talk to difficult patients' were painfully illustrating what wasn't working in that communication- and decided to therefore have a session TOGETHER. Find out why talking to patients can be hard- and why talking to oncologists is as least as hard. And obviously also how we ended up having margaritas with our oncologists!
19.00 Conference Dinner
Sunday, 13th October
Advocacy day- patient advocates only
9.00 - 9.45 Knowledge protects.
‘Fake news’ are a real danger for Melanoma patients- but finding correct information isn’t always easy. This session will explain the difference between real science and pseudoscience and how to check whether medical information is valid. And end with a chilling example about how difficult it can be to find out what is actually solid evidence.
Pseudo Science versus Real Science
Gilly Spurrier, MPNE, France, invited
Rigvir- a drug without evidence
Olga Valcina, MPNE, Latvia, confirmed
How to read Scientific papers
Bettina Ryll, MPNE, Sweden
9.45- 10.30 EUPATI- you cannot change a system you don't understand
EUPATI is a former IMI program designed to train patient advocates in the development in new medicines. A crucial topic when survival depends so much on new medicines like in Melanoma! Members of our network have participated in the program since the beginning- hear how they program came to be in the first place, experiences from participants and from EUPATI nordics, the sister initiative for our region!
Background on the European Patient Academy for Therapeutic Innovation
Anders Olauson, former EPF president and the 'grandfather' of EUPATI, confirmed
Mirjami Tran Minh, Kari Anne Fevang, Merete Schmiegelow
10.30- 11.00 Coffee
11.00 - 12.30 Making a difference for Melanoma patients in the Nordics
Vigiaccess- a powerful resource about side effects
Rebecca Chandler, Uppsala Monitoring Centre, Sweden, invited
Effective Melanoma therapies are new and have only been approved in the European Union since 2011. As the clinical trials have been small and especially checkpoint inhibitors are an entirely new class of therapies, we are still learning about new side effects and Vigiaccess is a very useful tool!
Panel discussion: looking at our challenges, what can we as network do?
12.30- 12.45 next steps and conference closure
13.00- 14.00 Lunch and departure
We are looking forward to seeing you in Gothenberg!
Last update 16th September 2019 BR
MPNE nordics 2019
Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe