Proposition 53K3345

Proposition de résolution relative à l'atrophie multisystématisée (MSA).

General information ¶

Authors

CD&V Nathalie Muylle
Groen Stefaan Van Hecke
LE Catherine Fonck
MR Valérie Warzée-Caverenne
N-VA Nadia Sminate, Reinilde Van Moer, Flor Van Noppen
Open Vld Bart Somers
PS | SP André Frédéric
Vooruit Maya Detiège

Submission date

Feb. 6, 2014

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

chronic illness health policy medical research resolution of parliament scientific research

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP ∉ Open Vld N-VA LDD MR VB

Contact form ¶

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Discussion ¶

April 3, 2014 | Plenary session (Chamber of representatives)

Full source

This resolution aims to alleviate the suffering of patients with Multiple System Atrophy (MSA) and to draw attention to their illness. The fact that many groups support this proposal shows that it makes sense. After all, the disease does not distinguish between political colour and the confrontation with it is equally hard for everyone. This draft resolution emphasizes the need to do more research on MSA and opt for a multidisciplinary approach.

Because of the N-VA MPs from the Public Health Committee, Reinilde Van Moer and myself, we would like to thank the colleagues from Public Health for their constructive cooperation. The draft resolution is an important policy signal that the government gives to patients.

Too often, MSA is confused with Parkinson’s disease. That confusion causes diagnostic and therapeutic errors, sometimes even causing the wrong medication. This makes the situation worse. A multidisciplinary approach is therefore essential. We are pleased that this resolution has crossed the boundaries between majority and opposition, as the resolution was unanimously adopted in the committee.

Mr. Speaker, dear colleagues, especially Mr. Van Noppen, the vote on this resolution has a very moving character, since its main author is severely affected by the disease on which the text relates. First of all, I would like to address Mr. Van Noppen the solidarity of my group, to wish him a lot of courage and to tell him how much we admire his gesture of wanting personal suffering to be transformed into an initiative of general interest, of public health interest. (The applause is )

Multisystemic atrophy (AMS) is diagnosed more often than before. This condition is no longer as rare as this, even though it is still considered a rare disease. This condition of the nervous system deserves all the more attention, I think, because we do not know its causes; because the diagnosis is not easy and often late; because there is currently no specific treatment and only a symptomatic approach.

The resolution that we vote today calls for resources for research, and the search for causes. I insisted during the committee debate on the fact that causes should also be sought in exposure to toxic products. On the internet, several sources suggest that there are probably links between this disease and other neuromuscular conditions and exposure to toxic substances.

We also ask for means for researching specific treatments with a multidisciplinary approach. We demand that there be reference centers as they exist in France, to gather expertise and put it at the service of patients. We also call for public awareness through an AMS Day.

Our society is facing various forms of neuromuscular degeneration and this is questionable, because these diseases do not only attack older people. This is not just because the population is ageing. For some of them, links to exposure to toxic substances were considered very likely. Parkinson’s disease among farmers is considered in France as a occupational disease in connection with exposure to pesticides.

I am therefore convinced that it is necessary to conduct a lot of research on the causes in order to be able to act and eliminate them. Society cannot deny its responsibility in the causes of many diseases, including cancer, on which we can act, on the pollution of our environment and to reduce the exposure of the human body to toxic substances.

I hope that our today’s initiative will lead to further steps and international collaboration towards better protection of human health.

Whoever is closely or closely following the Committee on Public Health knows that this issue is very important to us. Today, MSA patients often lose precious time before the correct diagnosis is made. We are pleased that this is finally being taken into account in order to be able to offer solutions. That takes away all our support, because so far — it has already been cited by previous speakers — patients unfortunately have no prospect of improvement.

The Flemish Interest Group would in any case support a resolution on MSA. The fact that a good colleague of us is suffering from this unknown condition makes sure that our group with even more conviction and even more sympathy will press the green button today.

Unfortunately, it is very unfortunate that we, as the only party, could not sign this resolution. But we do not let it come to our hearts, because it is not up to us. We know, and Flor knows, that there is much more friendship and support from our group than from some groups that have signed the resolution.

We sincerely wish Flor’s all support. We will fully support this resolution.

I have been following the Committee on Public Health since 2003. We discuss various bills and resolutions and approve them. I am always happy that I can do something for many patients, together with the other colleagues.

Today for me it is different, much more emotional. After all, we will soon vote on a resolution on Multiple System Atrophy, MSA, a rare condition that our colleague Flor Van Noppen suffers from.

Flor, I am glad that the committee can do something for you and for all other patients who suffer from this disease. From the many conversations we had, I learned that MSA is quite unknown, but unfortunately it is becoming more and more common. You told me that you first received the wrong medication, drugs for Parkinson’s disease, because of the affinity with parkinsonism. As a result of the wrong medication, the symptoms increased.

MSA is a severe condition, it is a degenerative process in the brain that requires a multidisciplinary approach due to its complexity.

Colleagues, Flor, I am pleased that today we can vote unanimously and with conviction across party boundaries on your resolution.

I wish you, on behalf of the SP-A-Fraction, the very best and a lot of strength.

I will do my best to make myself understandable.

All of you know that I am a person of few words. I hope that you will all positively expose this resolution.

I would like to take this opportunity to thank the members of the House and to say to all members of Parliament: thank you for being your colleague. (Long standing applause)