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The Dutch Treat on Lung Cancer
It starts with Awareness
Each year, lung cancer is diagnosed in more than 10,000 patients in the Netherlands. The mortality from lung
cancer is about as high as the number of new cases per year. Lung cancer is the cancer with the highest mortality
and is in the top three leading causes of death, as well as coronary heart disease and stroke.
Of all the men who get cancer, 15% get lung cancer. There is a trend that the number of men in whom lung
cancer is diagnosed decreases. This is due to a sharp drop in the number of smokers among men in the period
1960-1990. Lung cancer affects mostly men; Lung cancer is 1.8 times more common in men than in women.
In women, lung cancer is after breast cancer, the most common form of cancer. Of all women who get cancer, 9%
get lung cancer. The number of new cases of lung cancer in women is increasing since 1960. This increase is
due to the number of smokers among women. Since 2012 in the Netherlands more women die of lung cancer
than of breast cancer!
Only 15% of persons that are diagnosed with lung cancer are alive after 5 years and therefore lung cancer takes
the lives of more patients than any other cancer. Yet, because the disease is so closely associated with the
lifestyle choice of cigarette smoking, sympathy for its victims tends to be mixed with blame. An important aspect
of the congress will be that we create awareness among the people that it’s not to blame the patient but the
industry. The tobacco companies have spent in the USA 8.8 billion dollars on marketing in 2011 while only 460
million was put in state anti-tobacco programmes and 315 million was put in lung cancer research.
Although the link between smoking and lung cancer has been firmly established for decades, about 15% of lungcancer cases in Europe occur in persons who have never smoked or were light smokers. In 2013, the
International Agency for Research on Cancer confirmed outdoor air pollution as carcinogenic. As the number of
people smoking cigarettes continues to decline throughout the world, risk factors for lung cancer will change and
lung cancer is not a disease that will entirely go away when people stop smoking.
Inspire2Live wants to act and not just talk. This conference is meant to create awareness around lung cancer.
We believe that through awareness we can put lung cancer on the research agenda better then we did so far. But
not only this; we can also activate patients to participate in research and give them the faith that we can change
this deadly disease into a chronic disease like some other types of cancer already are. We have defined three
topics that we will work on during the conference and with which we will start shortly after:
1.
We have to create awareness among the people that it’s not to blame the patient for getting lung cancer
but the industry. How is it possible to market a product that contains carcinogenic substances? How is it
possible to market a product that deliberately makes people addicted? What can and should be done to
create the awareness that it’s the industry that kills? Not the so-called free will of the smoker?
2.
There is a difference in the treatments of lung cancer patients between hospitals because of the
differences in diagnostics. Molecular sequencing for the determination of the gene mutation, state of the
art imaging techniques for a better understanding of the tumour and its position and a team effort of
experts to determine the right treatment, based on the information of the sequencing and imaging. This
is only been done in a small number of hospitals in the Netherlands and not for all the lung cancer
patients. These differences lead to inequalities in treatments. We have to take care that all the patients
get the best treatments based on the best diagnostics.
3.
The price of the treatments is a problem with smaller patient populations because of the differentiation
through gene mutation (for example; only 1% of lung cancer is BRAF mutated and need specific drugs).
The treatment that follows means treatment with expensive drugs that are not available in every hospital
and are often available for off label use only. Currently, health insurance companies do not reimburse
use of off label drugs. We have to take care that off label drugs for lung cancer patients are reimbursed.
To make a change in the field of lung cancer that benefits patient directly, we need to solve these three problems
first. We really can do more at this moment and should not accept quality differences in lung cancer treatment.
Therefore, Inspire2live will create a platform that facilitates a discussion between patients, clinicians, scientists,
insurance companies and other stakeholders involved in this fight, to make a change that matters for patients with
lung cancer today.
A one day conference will be organised in the Netherlands aiming to answer the question ‘What to do for
improving the results for lung cancer treatments in general and more particularly in the Netherlands?’ on March
25, 2015
Practical.
The congress will be an open, one-day, congress but we specifically invite some important representatives from
the lung cancer groups from the Netherlands and abroad. Essential in this conference is the knowledge and
experience that we bring in from other countries. Therefore the presence of patient advocates, clinicians and
researchers from other countries is most welcome.
The chair will be done by Piarella Peralta (PA at Inspire2Live) and Joop de Langen (lung cancer clinician VUMC,
Amsterdam)
We will organize a preparation dinner the evening before the congress for our foreign guests. The organizational
committee will be present as well.
We kindly ask the participants to take care of their own travel and housing. For invited foreign participants we can
deliver a ticket and hotel. Reimbursements will be based on economy class prices and hotels will be booked by
our organization. The meeting will be hosted at VUMC in Amsterdam, which offers the congress facilities for free.
We want to have people from the media at the congress. Journalists from Dutch newspapers NRC, Telegraaf,
Volkskrant and Financieel Dagblad will be invited and most urgently asked to be present at the press conference.
Our aim is to have an interview with one of the keynote speakers and a Patient Advocate on the Dutch Television.
These are some examples of the attention that we want to have on the subject Lung Cancer in general, the poor
situation in the Netherlands and the possibilities that we see potentially more particularly.
We have both communication of the VUMC and Inspire2Live working on this. Together we will have the biggest
chance of getting the attention this topic needs.
The congress will be more like a day of hard work for all the participants and we will produce a Manifest at the
end of the congress that has a promising and high ambition. Shortly after the congress we start with action.
Each working group produces a PowerPoint (with the help of students or postdocs from the VUMC) on their topic
with conclusions and actions to be taken. This is done in 2 sessions. The leaders of each group work out their
PowerPoint’s and the chair(s) collects them and take care that the report of the congress will be made out of
these Powerpoints and are distributed. This also with the help of 2 students/postdocs.
This Manifest is the basis for action. Several projects will be defined based on this Manifest. The Manifest will be
send to the participants shortly after the congress.
Program Board.
Benjamin Besse
Institute Gustav Roussy (Paris)
Cassandra Nan
Inspire2Live
Egbert Smit
VUMC and Dutch Cancer Institute
Joop de Langen
VUMC
Peter Kapitein
Inspire2Live
Program.
8.00
Registration, coffee & tea.
8.30
Opening by the chairs Piarella Peralta en Joop de Langen.
8.40
The impact of Lung Cancer patients and their loved ones by patient advocate – Clemens Cornielje.
9.00
Chickens Come Home to Roost? Nicotine Manipulation and Tobacco Industry Knowledge of CigaretteInduced Addiction, Cancer Causation, and Youth Targeted Marketing - Louis Kyriakoudes (University of
Southern Missisippi).
9.30
Lung cancer, a complex and heterogeneous disease. Benjamin Besse (IGR).
10.00
The importance for patients to enter studies and for doctors to offer the possibility to enter studies - Peter
Kapitein together with Joachim Aerts (EMC Rotterdam).
10.30
Diagnosis and treatment of lung cancer in a tertiary centre (in the Netherlands). Harry Groen (UMC
Groningen).
10.50
Coffee break
11.20
Differences in lung cancer treatments. Veerle Coupé (VUMC)
Indicators in lungcancer care – Jan van Meerbeek (UZA, Antwerpen)
12.00
Strategies to overcome treatment differences of patients including reimbursement of off-label drug use –
Martin van der Graaff, ZINL.
12.20
How do we regulate the market in such a way that all patients receive the optimal treatment for lung
cancer? – Sander Dalhuisen (Achmea)
12.40
Lunch
13.30
Working session 1. We split in 3 groups (Each group is chaired by 2 or 3 leaders).
We work out several topics during the congress in two separate groups:
Group A ( Chair: Wanda de Kanter, Louis Kyriakoudes and Jan Gerrit Schuurman (PA – I2L)
It’s not the patient to blame but the industry.
Introduction by Wanda de Kanter.
Group B ( Chair: Veerle Coupé, Jan van Meerbeek, Egbert Smit and Clemens Cornielje.
Differences in treatments.
Introduction by Veerle Coupé).
Group C ( Chair: Sander Dalhuisen and Veronica van Nederveen (PA – I2L)
The price of treatments.
Introduction by Sander Dalhuisen.
14.30
Report back by the chairs of the session. In this report back the whole group gives new questions for the
second session.
15.15
Working session 2. We split again in 3 groups (The chairs stay at their groups. The participants are
different than in the first session).
16.15
Report back by the chairs of the session. In this report back the whole group gives the final comments to
be taken into account when writing the final Manifest.
17.00
Wrap up by Piarella Peralta en Joop de Langen.
17.30
Closing of the congress.