MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
Upon a joint invitation from m-icab, (Melanoma Independent Community Advisory Board),
and ESO, (European School ofOncology) about 90 stakeholders - Melanoma patients and
advocates, clinicians, representatives from the regulatory and Health Technology Assessment
boards and the pharmaceutical industry gathered last weekend in Brussels to discuss what
‘the melanoma trial of the future’ should look like.
‘Every time I meet someone involved in clinical trials, I ask them whether they would go on
that trial themselves if they were a Melanoma patient. So far, no one ever said yes, so there
is something wrong with the way we currently develop drugs in Melanoma!’
says Bettina Ryll, m-icab, who chaired the conference.
The poignant statements from patients clearly illustrated the need for change.
The conference started with a testimony from Lori Murdoch, a Stage IV Melanoma patient
from the UK, who described her experience on a current clinical trial like this:
“First you are told your mole is nothing, then you are told it is going to kill you and
then you are told that there is a drug that can help you, but you are not going to get it!”
The motivation behind this m-icab conference was therefore to explore alternatives to
the current system, and in particular to discuss whether adaptive licensing was a model
better suited to Melanoma patients’ needs of timely access to promising therapies,
a realistic evaluation of risks and benefits in a real patient population and a coordinated
regulatory and reimbursement approach.
Melanoma with its desperate disease situation and extremely promising novel therapies
appears to be a good candidate for an adaptive licensing pilot and conclusions will be
summarized in a statement paper to be published later this year which will be the basis
or the advocacy efforts for m-icab in the future.
Considering the European Medicines Agency’s call for adaptive licensing pilots
from 19th March 2014, the conference was extremely timely with a program that
anticipated the EMA’s call for a collaborative multi-stakeholder approach including patients.
M-icab is currently in discussions with IMI (Innovative Medicines Initiative) and
CASMI (Centre for the Advancement of Sustainable Medical Innovation) about follow-up
educational opportunities in order to enable Melanoma patient advocates to participate
constructively in the discussion.
The second day of the conference reflected the evolution of m-icab from a community
advisory board towards a patient network and was de facto the foundation of the
Melanoma Patient Network Europe (MPNE), which will in the future replace the
Melanoma independent community advisory board. The recently launched MPNE website:
MPNE intends to act as a platform for Melanoma patient advocates across Europe
to exchange know-how and to collaborate effectively on European issues in Melanoma.
The network identified the need for reliable information, especially in the context of clinical trials,
as top priority. The conference included a ‘Focus on’ session in which the network impressively
demonstrated its existing expertise. This year’s session was ‘Focus on Romania’ where Romanian
Melanoma patient advocates asked the network for advice on a number of pressing issues for
Romanian Melanoma patients, among them the necessity to reach remote rural populations
and how to address the stigma that is still attached to cancer in the region.
Conference participants unanimously commented on the constructive atmosphere and
collaborative approach at the conference and we are looking forward to follow up on the ideas
generated during this weekend!
A commented version of the conference program is accessible here.
information, please do not hesitate to contact Bettina Ryll.
Notes to the editor
Facts about melanoma:
Motivation for the conference
Unparalleled recent therapeutical progress gives,
for the first time ever, hope to patients with metastatic Melanoma who
historically only survived 6-9 months after diagnosis.
With the most promising therapies in clinical
development, clinical trials have effectively become the best therapy option,
where the chance of survival depends on access to fair and meaningful clinical
trials. While the overall situation is hopeful, Melanoma patients have become,
in times of financial austerity, crucially dependent on successful
pharmaceutical innovation, involving timely access to promising new therapies,
fair and meaningful clinical trial design and coordinated approval and
reimbursement of therapies that made it through the process.
Definition (These) 'adaptive approaches are all based on
the premise that knowledge about medicines is not binary but continues to
evolve over time. The proposal is to replace the single transition from
non-approval to approval with a series of approval stages with iterative phases
of evidence gathering and regulatory evaluation.'
Source: WHO-Priority Medicines for Europe and the World 2013 Update
The EMA call
for adaptive licensing pilot projects from March 19th, including
original literature on the topic: goo.gl/FJZSuf
Founded in 2011 upon the initiative of Patricia Garcia- Prieto and Quentin van Daele at
ECPC (European Cancer Patient Coalition), m-icab was a pilot to adapt the
successful ECAB concept of the HIV/AIDS community for oncology patients.
MPNE takes into account the evolution of m-icab from an advisory board to a network
providing patient support. MPNE functions as a platform to increase the
cohesion of Melanoma patients and their advocates across Europe and to
pragmatically help Melanoma patients. The platform will 1. facilitate the
exchange of experiences, knowledge and best practices 2. provide educational
opportunities, both on Melanoma-related topics as well as capacity building and
3. help to launch Melanoma-related projects.
ESO was founded by Umberto Veronesi and Laudomia Del Drago in 1982, with the aim of
contributing to the reduction of deaths from cancer due to late diagnosis
and/or inadequate treatment. ESO’s mission is reﬂected in its motto “Learning
to Care”, which stresses the concept of studying and learning and also of
caring for the patient in a global sense. By improving the skills of all health
professionals dealing with cancer patients, ESO shortens the length of time
needed to transfer knowledge from research centers to daily practice, combining
advanced technology with humanism in care.
'True to its motto “Learning to Care”, ESO has always given great importance to the learning
process, with special focus on the clinical aspects of the cancer problem. ESO
was therefore delighted to support the M-icab in the organisation of the M-icab
conference on clinical research in melanoma; this conference provided both
education and information as well as concrete suggestions on how to improve the
clinical reality of melanoma patients and is by this very much in the line of
thinking of ESO.