MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

TLV mandate

The Dental and Pharmaceutical Benefits Agency, TLV, is a central government agency whose remit is to determine whether a pharmaceutical product, medical device or dental care procedure shall be subsidized by the state. We also determine retail margins for all pharmacies in Sweden, regulate the substitution of medicines at the pharmacies and supervise certain areas of the pharmaceutical market.Skriv ditt stycke här.

SBU mandate

SBU, the Swedish Agency for Health Technology Assessment and Assessment of Social Services, is charged with undertaking independent assessments of methods used in health, medical and dental services. SBU also evaluates methods used by social services and services provided with the support of the Law regulating Support and Service to persons with certain functional disabilities (LSS). 

Last update 7th October 2019 BR


in  the north of europe. 

11th- 13th October 2019 

Skeppet Ärans Väg 23, Nya Varvet, 426 71  Västra Frölunda
Gothenberg, Sweden


version 7th October 2019

please bring your laptop/ tablet

Friday, 11th October 

Nordics hubs meeting (arrival the evening before)

13.30- 14.30  Coffee and Registration

14.30- 15.00 Welcome to our first MPNE nordics!

Meet the organisers

15.00- 15.45  Session 1- Opening session

Chair Magnus Dale 

Comparator report on cancer in the Nordic Countries

Nils Wilking, The Swedish Institute for Health Economics, confirmed 

Further reading

Comparator Report on Cancer in the Nordic Countries – Disease Burden, Costs and Access to Medicines

15.45- 17.15 Session 2- How novel medicines reach Melanoma patients- Sweden in focus

Chair Bettina Ryll 
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? 

Learning objectives

- 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?

Health Technology Assessment in Sweden

Niklas Hedberg, Tandvårds- och läkemedelsförmånsverket, TLV, confirmed

Jan Liliemark, Swedish Agency for Health Technology Assessment and Assessment of Social Services, confirmed  


Background reading
Health Technology Assessment in the Nordics 

An overview of the Swedish system for pricing and reimbursement of pharmaceuticals (2017)

17:15- 18.00 Session 3- Melanoma QuickStart

  • Melanoma basics- disease and therapies
  • Know your Stage!
  • Introduction to the weekend

19.00 Dinner

Saturday, 12th October

8:45- 10.15 Session 4- The latest Melanoma developments:

adjuvant treatment- and the very latest: neo-adjuvant treatment.


How do we treat Stage 3 Melanoma today? And what about Stage 4 resected?Who needs CLND (Complete Lymph Node Dissection)? Which therapies are approved in the adjuvant setting and which are reimbursed? And for which stage? And what is happening in the neo-adjuvant setting? And what about Stage 2?  

Adjuvant therapy in Melanoma

Ana Carneiro, Lund University, invited 

A patient perspective on Lymphedema

interviewer: Magnus Dale, speaker 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.

Access to adjuvant therapies in the Nordics
Tone Skajaa Rye, Melanomforeningen Norway, confirmed

Further reading on neo-adjuvant therapies





10.15- 10.45 Coffee 

10.45- 11.30 Session 5- 
When therapies fail patients


​The patient's perspective

Kristian Øye, Norway, confirmed

The oncologist's perspective

Marius Normann, Norway, confirmed


11.30- 12.15 Session 6- The latest from ESMO 2019

ESMO 2019 has just concluded and

we will be sharing the most relevant updates

for the Melanoma Community.

You can already listen now to Teresa Amaral's

summary on ecancer!

Teresa Amaral, University Hospital Tübingen, Germany 


12.30- 13.50 Lunch

14.00- 15.00 Session 7- 
Brief introduction to Rare Melanomas: uveal, mucosal, paediatric and acral Melanomas

Introduction to rare Melanomas

Bettina Ryll, MPNE

Uveal Melanoma
Erik Näsman, MPNE, confirmed

Patient perspectives on mucosal and rare Melanomas

speakers tbc

Interested in rare Melanomas? Please consider a last-minute application!

MPNErare 2019 in Berlin, 25th- 27th October 2019

15.00- 16.00 Session 8- Access to treatment

Clinical trials as way of accessing treatment

Bettina Ryll, MPNE 

Accessing clinical trials abroad

Eric Näsman, MPNE, confirmed

16.00- 16.30 Break 

16.30- 17.30 Session 9- Panel discussion on communication between oncologists and patients and on what social media can do for you with Gil Morgan, Skåne University Hospital, Sweden

'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!

Social Media have changed the way we interact- not only for patients but also for oncologists. Find out what Gil has been up to- and what we can all do to keep patients online safe.

18.30 Reception 

19.00 Conference Dinner

Sunday, 13th October

Advocacy day- patient advocates only

9.00 - 10.30 Session 10- WORKSHOP

Reading the very latest Melanoma Scientific literature

Our flagship workshop: learning how to read original Scientific literature as the fastest way to know what's going on. And with our MPNE cheat-sheet, not as difficult as it might sound, we promise! 

In parallel groups, we will be reading the 3 recent Melanoma studies published in the NEJM that were presented or updated at ESMO. We'll annotate them and publish them for our community on the MPNE MELANOMA ESSENTIALS.

We will be reading

​​Five-Year Outcomes with Dabrafenib plus Trametinib in Metastatic Melanoma

​Five-Year Survival with Combined Nivolumab and Ipilimumab in Advanced Melanoma

​Combined Nivolumab and Ipilimumab in Melanoma Metastatic to the Brain

Material and tools provided but please bring your laptop/ tablet.

​10.30- 11.00 Coffee

11.00- 11.45 Session 11- EUPATI- you cannot change a system you don't understand

Chair Mirjami Tran Minh

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!

Why care about medicines' approval- an EMA experience

Lucy Davis, UK, MPNE

Background on the European Patient Academy for Therapeutic Innovation 

Anders Olauson, former EPF president and the 'grandfather' of EUPATI, confirmed

The EUPATI experience

Kari Anne Fevang

EUPATI nordics 

Mirjami Tran Minh, Kari Anne Fevang, Merete Schmiegelow, Roald Nystad

11.45 - 12.30 Session 12- 
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 provides a chilling example about how difficult it can be to find out what is actually solid evidence. So what can we as MPNE do to keep patients save?
Pseudo Science versus Real Science
Gilly Spurrier, MPNE, France, confirmed
Rigvir- a drug without evidence
Olga Valcina, MPNE, Latvia, confirmed


12.30- 12.45 MPNE- what's next? 
Bettina Ryll, MPNE

13.00- 14.00 Lunch and departure

We are looking forward to seeing you in Gothenberg!

MPNE nordics 2019