Proposition 53K1078

Proposition de résolution relative à l'instauration du 22 octobre comme journée nationale dédiée aux Maladies Inflammatoires Chroniques Intestinales.

General information ¶

Authors

PS | SP Colette Burgeon, Marie-Claire Lambert, Yvan Mayeur, Franco Seminara
Vooruit Maya Detiège

Submission date

Jan. 19, 2011

Official page

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Status

Adopted

Requirement

Simple

Subjects

chronic illness resolution of parliament public health

Voting ¶

Voted to adopt

Groen Vooruit Ecolo LE PS | SP MR

Abstained from voting

CD&V ∉ Open Vld N-VA LDD VB

Contact form ¶

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Discussion ¶

Oct. 20, 2011 | Plenary session (Chamber of representatives)

Full source

Approximately 30,000 Belgians are affected by chronic inflammatory bowel disease (CCI), including Crohn’s disease and ulcerative colitis. Approximately 15,000 people suffer from Crohn’s disease and 15,000 from ulcerative colitis.

These diseases are chronic and incurable. Once installed, they evolve by push throughout the patient’s life. They are also largely unknown to the general public. Symptoms are socially very disabled, maybe that’s why we sometimes don’t want to see them. These symptoms lead to non-recognition of patients and the impact of these diseases on their daily lives.

To try to remedy this lack of recognition, this disability of the disease and its chronic character, various associations launched in 2008 the campaign "Control Crohn". The idea is to make the disease known to the general public and to generate a list of establishments in Belgium – shops, restaurants, cafes – that offer free access to their toilets to patients suffering from the disease.

The response rate has been good but it is not yet satisfactory in relation to the needs and the need for social recognition. Belgian associations have therefore wanted to create, somewhat on the French model, a national Day dedicated to chronic inflammatory intestinal diseases. The aim is to inform and raise public awareness about this type of disease. In addition, these patient associations have told us about other types of difficulties they encounter and their desire to have adjustments in certain aspects of their daily lives.

The initial objective of the resolution presented to you today was to establish a National Day of Chronic Inflammatory Bowel Diseases in Belgium on 22 October. As we are already on October 20, an emergency request had to be introduced.

The second point of the resolution was to get in touch with regional and community governments so that this translates into concrete information and awareness-raising actions. This resolution was discussed in the Public Health Committee. Representatives of the various parties had the opportunity to speak on this subject. Two sessions were needed to get everyone’s opinion.

My N-VA colleagues do not underestimate what patients with this condition experience on a daily basis. However, they raise doubts about the usefulness of the proposal studied. N-VA supports a horizontal rather than vertical health care model and opposes a vision where care is organized by affection. The N-VA was joined in its objections by the Vlaams Belang.

On the other hand, the PS and sp.a who supported the proposal defended the idea that a National Day of Disease could have a significant symbolic effect in terms of revalorizing those people who regret that their suffering is not recognized. Despite the symbolic character that a National Day can have, it seemed to us very important. From the beginning, the Ecolo-Groen group! They supported the resolution. I have submitted amendments to strengthen it. These aimed to raise awareness in the horeca sector so that it gives free access to toilets to these people.

The second amendment concerned the need to examine the possibility of avoiding any obstacle to employment. People suffering from MICI should not be discriminated against in their company.

The third amendment addressed the issue of insurance and aimed to prevent such persons from being subject to discrimination in insurance, in particular with regard to the insurance premium “for remaining balance due”.

Note that this is a resolution and not a legal proposal.

With this clarification, Mr. Damien Thiéry expressed his reluctance to the last amendment mentioned above, believing that the issue of insurance should be settled in another debate. A law has been passed to prevent this type of discrimination, but it is not yet applied.

We understand the point of view of Mr. Thiéry, my group and others supported the amendments that had been submitted because we felt it was important to add this dimension to the resolution.

The CD&V considered that the establishment of a national day was not ⁇ interesting in that it favors a more horizontal and more general approach to chronic diseases. The Open Vld has taken the same position.

Finally, even though some parties were absent, the resolution was voted by 7 votes for and 2 abstentions.

After speaking as a rapporteur, I would like to say that as a member of Ecolo-Groen!, I confirm that my group will support this resolution proposal.

Mr. Speaker, colleagues, in sympathy for the many discomforts, suffering and concerns of patients suffering from Crohn’s disease and ulcerative colitis, I wear this ribbon today. It is a sign of solidarity with those affected by chronic inflammatory bowel disease. Nevertheless, I have strong doubts about the added value of this proposal for a resolution.

Of course, we are all in solidarity with chronic patients. We only have questions about the introduction of a national day. Every disease has its discomforts, and if we have to proclaim a national day for every disease, then we eliminate every signal function. All those days mean nothing in practice.

There is already World Cancer Day, World Kidney Day, World Down Syndrome Day, World Tuberculosis Day, World Park Day, International Day for Safety and Health, World Asthma Day, International Fibromyalgia Day, World Hepatitis Day, World Multiple Sclerosis Day, Multiple Sclerosis Week, Heart Week, International Alzheimer’s Day, World Dawn Day, World Mental Health Care Day, International White Stick Day, World Diabetes Day and so on. I wonder if those patients are helped with a national day.

The resolution provides no added value for patients and ⁇ not for Parliament. Next week there is another resolution proposal in the committee, this time for hepatitis patients.

Chronic patients need good health care. It provides appropriate treatment and proper care, regardless of the condition a person suffers from. It is a horizontal health care, where each patient has access to the care that one truly needs, and not as it is now, a vertical health care, where a care is organized by condition. Every disease has a member of parliament who wants to put himself at the forefront.

Such a health care does not have the N-VA in mind. We strive to provide good care for all patients, not only for patients with chronic inflammatory bowel disease, but also for those patients for whom there is no national day. In addition, the policy must be determined by the responsible authority. When it comes to concrete information and awareness, prevention, therefore, as requested here, it is not the federal government, but the Communities. We believe that the national government should not be bothered with a policy over which it has no competence.

Despite our sympathy for the patients, we will not support this resolution.

Mr. Speaker, colleagues, a large group of people is affected by chronic inflammatory bowel pain. Approximately 850 new patients are diagnosed each year. I find it bizarre that, despite these high figures, the two main conditions, colitis ulcerosa or inflammation of the colon and Crohn’s disease, an inflammation that mainly prevents the transition from the colon to the small intestine, are hardly or not known to the public. Usually one is also unaware that there are complaints of real attacks of diarrhea – that is, that one should spur to the toilet and not step to the toilet –, blood at the stool, severe complaints of abdominal pain to fatigue and fever. The fact that a large proportion of patients thus end up in social isolation is even less conscious.

According to the experts and the patient associations, ignorance is mainly due to the too big taboo associated with these disorders. The reason is not far away, my colleagues. From childhood, we are taught not to talk about this subject. A child is promptly encouraged not to do with the words that it is dirty. So it is not done. For this reason, it is extremely difficult for adults to talk about the subject without any shame. It is extremely difficult to explain to colleagues or friends that one cannot go out shopping or eating because it is too difficult.

The patient associations and experts have asked us to help break the taboo. This can be done in a good way, namely by setting up a national day.

For this reason, I find Mr Beuselinck’s argument very weak. It is weak to say that all chronically ill people should be treated equally. For example, a diabetic patient has completely different expectations than someone who suffers from Crohn’s disease. A fibromyalgia patient also has other needs.

Therefore, sp.a today supports the present proposal for a resolution. I am very happy that we will get a majority in this Parliament.

Collega Detiège, you list all the problems, namely that the conditions are not sufficiently known and that patients have difficulty expressing themselves. Do you really think they are really helped by establishing a national day?

Colleague Beuselinck, when drafting a resolution, conversations are normally conducted with various associations and with experts.

Around each illness, a number of core points emerge. Some people with this disorder have been sitting in the public tribune for several hours waiting for the result, to know what can be done for them. Patient associations usually ask for money, but this group exceptionally does not. They are asking for recognition of the disease. If it is symbolically so important for them to be able to break the taboo in this way, then I offer them that. I am pleased that the majority of the Parliament is willing to do so.

It is your full right to disagree with this, as you just said. However, we follow the line of the people who ask for it.

Mrs. Detiège, what will concretely change the situation by organizing a national day?

I believe that this question should come from the patient association, from the social partners, thus from the bottom, but not that in Parliament one week a resolution is adopted on a particular disease or condition and the next week another resolution on another disease or condition. How would this help the stakeholders concretely?

Mr. Beuselinck, I will explain it to you, because I came to that point in my argument.

There are two objectives in the resolution. One of them was added by Ms. Snoy and means a huge added value. This was done through an amendment and our party supported it.

Two elements are very important to break through social isolation.

First, recognizing that day means giving emotional support to a significant group of people. You do not like it, but I think we do. We provide mental support to those people who have lived in a kind of taboo for years.

One has to bear in mind to say that one suffers from the gut. How many people do not start laughing? That is a fact, that happens so in our society, because there is a taboo about it. You can deny that there is a taboo, but I catch other signals. So it means a huge emotional value for that group of people that they finally feel supported with regard to their condition. They have not received that support for years. The debate can also be held on that day. For example, information can be provided on that day. That brings me to the second leak.

There has been a pass for those people for several years, but apparently this is not a conscience. On such a day, one can remind the hospitality industry and government agencies of this, in order to avoid involving patients having to wait for an event. Their condition is a reason for some patients not to dare to go to a performance. Imagine that there are six people waiting in front of them at the toilets and that they still have to explain to the toilet lady what that pass means! These situations lead to social isolation.

Therefore, I find it ⁇ strong that Mrs Snoy’s amendment was also added to the resolution.

Colleagues, to complete what has been possible in France since 2006, it must also be possible in our country. The first Belgian edition took place last year without any support from the government or Parliament. The second edition, which takes place on Saturday 22 October, may take place with the support of the Minister and the majority of the Parliament.

Mr. Speaker, dear colleagues, the resolution proposal that my colleagues and I are submitting to your vote aims to give a spotlight and to bring out the shadow of chronic inflammatory bowel diseases too unknown to the general public.

It has been said that about 30,000 Belgians are affected by this type of infection. These diseases are chronic and incurable: once established, they evolve throughout the patient’s life. Unfortunately, their exact causes are not yet known.

Despite the large number of people with these diseases, these two pathologies are little known. The symptoms are socially highly disabled and unknown, resulting in a non-recognition of the patient and, therefore, the impact of these diseases on daily life, professional and social.

One of the main symptoms of these diseases is diarrhea and Ms. Detiège spoke of the taboo that this symptom constitutes in our culture. Even for patients, it is difficult to talk about it freely.

Another problem is the lack of access to the toilet. I thank Ms. Snoy for introducing her amendment to improve the situation of the sick through this request addressed both to public services and to the establishments of the horeca or to large surfaces. In order to be able to leave their home and lead a more or less normal social life, the sick must be able to find toilets at any time and anywhere; this is far from the case.

As early as 2008, some associations launched the Crohn disease campaign to raise public awareness and generate a list of establishments in Belgium offering free access to their toilets.

To date, there are 1, 550 points across the country that participate in the operation. However, this is not yet sufficient.

In France, since 2006, there is a national day of chronic inflammatory diseases of the intestines. It is clear that the objective pursued by the institutionalization of such a day is to inform and raise awareness to the general public. A national day allows to effectively mobilise all actors, all stakeholders, patients, of course, who feel supported and recognized, but also the medical body, all the care staff, researchers, the media, the political world that we are and the general public as a whole. It is really important to talk about it.

Massive, correct and recurring information can, in the long run, break the taboos surrounding these diseases and thus get patients out of social isolation. That is why the present proposal suggests that 22 October be established as a national day.

I, along with many of my colleagues, symbolically wear the bad tape, which is the sign chosen by the associations active in the field and which allows to give visibility to their fight. So my group, of course, supports the proposal that is submitted. I also look forward to finding in our assembly a majority to support this struggle and to raise awareness of this ⁇ difficult and disabled social phenomenon in our entire population.

Mr. Speaker, dear colleagues, although aware of the merely symbolic scope of this proposal for a resolution, my group will support it, as well as the amendments submitted by Ms. Snoy and d’Oppuers. I think you have taken into account our comment on the pricing of the insurance for the remaining balance due.

In fact, MICIs are still little known and relatively taboo diseases. Special attention is welcome. By wearing the bad tape, we contribute to it. Furthermore, awareness of the symptoms and better information of patients and staff can only promote the daily life of people who are affected and who, as it has been said, suffer from a certain social loneliness.

Finally, in order to bear fruit, this national day must of course be accompanied by actions directed to the general public.

Mr. President, I thank you. I will be relatively brief, and I will ⁇ not allow myself to take a position with regard to certain fractions who have preferred to abstain, because everyone must approach this question in his soul and consciousness.

I agree positively with my colleagues. As said, this is essentially a symbolic text, but this gesture is fundamental for patients.

I am quite sensitive to chronic diseases in general. As I pointed out in the committee, I fully support the objective pursued by Ms. Snoy. This is to avoid an unjustified increase in the insurance premium for the remaining balance due. But I would also like this concern to be extended to all chronic patients. I had recalled that a law had been passed on 21 January 2010. It amends the Law of 25 June 1992 on the Land Insurance Contract and achieves the objective pursued by Ms. Snoy. It was partially blocked. That is why I ask that this text, which has been the subject of a very long reflection in the Committee of Economy and which rightly targets all chronic patients, be applied as soon as possible.

In any case, of course, I firmly support the resolution proposal for the benefit of patients suffering from this extremely disabled disease.

My party will abstain from this resolution. We ⁇ don’t do this because we don’t have respect for the patients, who, by the way, are present in the hall, but we find what we have today is a missed opportunity. For us, it goes beyond proclaiming a national day.

When I look at the supplementary points and amendments to the resolution, it is about passages and about catering use. It also concerns insurance companies. These may be important points, but I think that colleague Seminara has set the right tone for this debate. He said in the committee that the costs per patient can reach up to 3 000 euros per month. This resolution does not provide an answer to this.

However, there are answers. I think, for example, of the initiatives of my party in this regard: an extension of the social third-payer scheme, the integration of the OMNIO statute into the increased response, the reduction of certain minimum thresholds for the maximum invoice, and I can continue so for a while.

These are measures that help these patients. I take these patients seriously. My party helps those people with the measures that we want to see approved by Parliament. I hope that our colleagues will support our initiatives with the same enthusiasm.

Mr. Speaker, the colleagues ask for a consultation with the Communities. This resolution is also not needed. All the submitting parties form part of the majority in the regional parliaments. Then do not do it through a resolution in the federal parliament, talk about it with your people in the regional governments. We do that.

Mr. Speaker, dear colleagues, I talked about numbers, but it is not because things are difficult or expensive that we should not dare to take them. I will not return to what has been said but it is important to establish this day in order to raise awareness of this problem.

I think it is a very hypocritical attitude of CD&V. They say they are concerned about the patients, but it is at the request of the patients that this resolution is there. You simply do not vote for. You are abstaining. I think this is very cruel to the patients.

The [...]

If you find it so important to get them out of social isolation, approve the resolution.