Proposition 54K0448

Proposition de résolution relative à une approche pluridisciplinaire de la maladie de Lyme ou borréliose de Lyme.

General information ¶

Authors

Open Vld Nele Lijnen, Ine Somers

Submission date

Oct. 20, 2014

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

therapeutics infectious disease medical diagnosis medical research resolution of parliament disease prevention disease vector

Voting ¶

Voted to adopt

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

Contact form ¶

Do you have a question or request regarding this proposition? Select the most appropriate option for your request and I will get back to you shortly.

Discussion ¶

May 26, 2016 | Plenary session (Chamber of representatives)

Full source

I refer to the written report.

I will not be too long in this discussion. I just want to say that my group will support the text that is submitted to us today. In fact, we believe that it makes the right summary of the work we have done in improving the diagnosis and care of people with Lyme disease.

If it's obvious today, it's at least that Lyme's disease is very, or even extremely controversial. The hearings we conducted proved this. Oppositions and exchanges of invectives have actually multiplied alongside the suffering raised by patients. It is in this extremely complex scientific context that many people are currently struggling to find their place and answers to the diverse and many problems they may encounter.

Of course, we are not, as MPs, those and those who can determine what scientific approach to take, what treatment to develop, or how the diagnosis to be made in the context of this so complex Lyme disease.

But what we can do is at least highlight the problematic elements that were confirmed during the hearings and refer them to the government to take the appropriate initiatives. Improving prevention in collaboration with federated entities, boosting research and, above all, allowing for an update of the recommendations for the treatment and diagnosis of Lyme disease as part of a multidisciplinary scientific approach, are all important elements that are included in the text and that we support.

Through the various texts that were on the table, our goal was clear. The aim was to respond to these patients as effectively as possible by placing them at the center of diagnosis and treatment. We therefore hope, with the vote of this resolution, that concrete progress can be made and that the government will do the necessary to implement the requests addressed to it as well as to continue the establishment and development of the “chronic diseases” plan.

Mr. Speaker, colleagues, the N-VA Group will support this resolution on the multidisciplinary approach to Lyme disease. In this brief presentation, I would like to emphasize that we, as a group and as a party, herewith recognize the need for a clear social problem in the field of public health. I would like to make three short remarks.

The first question we ask in such a resolution is cui bono? Who gets better here? Or who do we want to be made better by this resolution? Our Minister, together with us, always agitates about this: the patient is at the center. The patient needs to improve.

There is no one here to ignore that our society is struggling with a problem of chronically ill people. Chronically tired patients are looking for answers, a diagnosis and treatment. What is Bono?

As a physician and cardiologist, I personally believe that we did not invent heart disease. During the hearings, however, I was occasionally overwhelmed by the concern that we should be careful. In the world of chronic fatigue, a number of people are running around with mercantial intentions.

In a health care that in Belgium amounts to approximately 27 to 28 billion euros, of which three-quarters are financed by our government, of which we must be the good housefather, the question must ⁇ be asked. A quarter comes directly from the patient’s pocket. This patient is sometimes, desired or unwilling, a willing prey of people who have not so much committed to his health as to his portfolio.

The second point is about our work in the Public Health Committee. In addition to Public Health, it is also the Committee for the Environment and Social Renewal.

This committee has fifteen members. Of those fifteen, there are two doctors-specialists, colleague Fonck and myself. We also have a doctor in medical sciences and a midwife, and then we are already walking a little bit on our breath when it comes to university medical training.

Of course, we want to put the patient and his needs at the center, but in a political forum such as the Public Health Committee we must recognize that this may not always be the ideal place to discuss complicated illnesses with knowledge of matters. The substantial complexity of those discussions occasionally gave rise to embarrassing discussions.

Finally, I would like to conclude with a last point of attention, evidence-based policy. As a doctor, I am a big advocate of evidence-based medicine, but one must also face: the absence of evidence is not the evidence of absence.

It is not because one has no evidence of a particular disease that that disease does not exist. I want to put my hand in the medical belly. We may be critical, but we must be vigilant and keep our attention to the patient and his problems.

Evidence-based policy means that one makes decisions based on what one can measure scientifically. In the sixth century, people assumed that the earth was flat. One did not have the means to measure it, much less to deny it, and much less to confirm it.

In today’s medicine, we know a lot. Let us use that knowledge, let us rely on that broad field of our academics and of those who are involved in it, and let us support them. That is the task of our committee. We need to let the experts do their work.

I come to my decision. I have absolutely no trouble supporting this resolution, but this resolution also fits me in that evidence-based policy. As a good home father or mother, we must be able to show our great heart, but nothing is more embarrassing than having to conclude at the end that one does not have a portfolio to show that great heart.

We have to think about this. This is the task that the N-VA will always be dealing with in this government. How do we keep all this affordable? How do we finance our big heart? How do we define that big heart and ensure that with our big heart our portfolio can also be used in the right place?

I referred to my written report, because the exchanges in the committees are resumed therein in accordance with what was said. I would also like to emphasize the quality and positive nature of the discussions. The climate was very constructive. We reached a compromise after hearing several people, including patient associations, doctors and patients themselves. Ultimately, we realized how extremely complex and controversial this topic was.

I very much liked the intervention of my colleague Jan Vercammen. Obviously I fit in the right line of his remarks, because his reflections have been ⁇ relevant.

As for the differences, we understood at the end of the hearings how complex the issue was, ⁇ in terms of diagnosis. I had pointed out in the committee that from the moment the scientists fail to agree with each other, it is naturally very difficult for us to find the ideal source to help us legislate. That said, on the basis of the various information that has been transmitted to us, we are, nevertheless, at a compromise.

I mentioned the difficulty of making a diagnosis. I would also like to highlight the reliability of the tests, the existence or not of a chronic version of the disease, the divergence of treatments – antibiotics or not, and for what period – and, finally, the evolution of this pathology. In fact, some argue that we are heading toward an epidemic, while others argue that the disease is regressing.

From all these elements, we had to agree to promote various actions and, most importantly, express several requests to the government. I would like to point out a few of them that seem important to my group. First of all, it is about stimulating research, as has been said. By the way, it is likely that it will make it possible to form a more accurate diagnosis and have a more early approach to the pathology, therefore to act preventively. Also, we should pay special attention to possible co-infections.

by Mr. Senesael touched a word of the involvement of federal entities. It seems to me, of course, indispensable in terms of prevention, training and increasing medical knowledge, as well as in terms of research on the evolution and elimination of ticks. These are as many priorities that the federal government will have to seize as federal entities.

With this resolution proposal, we are outlining precise axes for a better approach to Lyme disease. As I said, there was a unanimity in the committee. This is in line with the controversies we have heard. I am delighted. It is not surprising that my group will vote favorably for this resolution.

Mr. Speaker, dear colleagues, Mrs. Minister, this legislature has taken several parliamentary initiatives with the aim of reaching a multidisciplinary approach to Lyme disease.

Today we vote on a text aimed at efforts to make Lyme manageable, understandable and treatable.

With this resolution, we declare the fight against the infectious disease transmitted by the tick bite. This resolution text demonstrates commitment to eliminate the blind spots and gaps in the current Lyme approach.

The resolution also unambiguously opts for a broader and more qualitative overall approach from Lyme, as already explained in the report.

My party expresses its support for this text for various reasons.

First, there is consensus on the fact that more attention is needed to prevent and sensitize tick bites. This will be done, among other things, through the website signennet.be. The provinces also have an important role to play in this.

Second, the myths and untruths that still exist around Lyme, we must continue to fight and eliminate and support the experts in doing so.

During the debates and hearings, there has been a large gap between, on the one hand, stakeholders who consider Lyme disease as a serious condition that can be scientifically supported and, on the other hand, stakeholders who question Lyme’s scientific evidence. The patient has no message. Therefore, more and good evidence is needed.

That is a third major reason why we support this resolution, to invest continuously in a greater general level of knowledge in treating, understanding and controlling Lyme.

A evidence-based approach focuses on further research in the broadest sense of the word, such as pharmaceutical research, continuous training of professionals and scientific research into treatment and analysis.

Fourth, the main reason why we support this is the care for patients with Lyme disease, which must be qualitative, accessible and affordable. If new tests are sought, it should also be ensured that it is examined that a reimbursability is provided through the health insurance.

Colleagues, I conclude with a quote from the Eastern scholar Confucius: “It doesn’t matter how slow you go, as long as you don’t stop.”

This resolution chooses the way forward. That is also why my group will approve this resolution.

Mr. Speaker, colleagues, Mrs. Minister, it has not been said here yet, but one gets Lyme disease by a turkey bite. Lyme disease and how to treat it is a difficult topic, about which there are great contradictions among specialists. This was stated during the hearings. If experts and scientists don’t do it, how should politicians do it? Especially, how should it then be to establish those contradictions in science for patients who have suffered from Lyme disease and suffer from it today?

There are conditions in which the diagnosis is made with exclusion. Those who do not show the obvious external signs, namely a typical rash, the ring around the bite, are often unaware of a bite. The effects may manifest themselves years later.

The core of the problem of Lyme is that we lack a good diagnostic instrument and that there are still a lot of questions about how to treat it. A government does not develop a diagnostic tool. That is the task of scientists. As a government, we can carefully follow the developments in this area and, as soon as there is a sound instrument, ask that the RIZIV investigate its refund.

Today we have the BAPCOC 2015 Lyme Borreliosis Diagnostic and Treatment Guidelines. Given the increasing number of signs, it is important that general physicians are reminded of that directive. In that context, it is also important that the Communities make efforts to improve the knowledge of general practitioners on Lyme disease. We see that there is still a huge shortage of that today. I ask you to look in your surroundings. Anyone who has suffered a tick bite and went to a general doctor will probably hear a different story.

It is also important that we can adapt the Diagnostic and Treatment Directive to the latest scientific insights. The resolution very specifically refers to two studies, a cohort study and a seroprevalence study, which is now running at the WIV. We ask the Minister to amend the Directive if those studies provide new insights. It is also important to take into account co-infections, which appear to be increasing. It is essential for our group to once again emphasize the importance of multidisciplinary treatment.

Even better than having to diagnose and treat is to prevent. This requires prevention, i.e. raising awareness to be careful of chicken bites and constantly informing them about what to do in case of chicken bites.

Prevention and awareness raising are regional and community matters. This is why we urge you to call on your colleagues.

Finally, we need numbers of data. We need figures on the number of people who suffer from a tick bite, the consequences, the actions they take, as well as the development of the tick population, their biotops, and the extent to which ticks are infected with the borrelia bacteria.

What happens to a man is a federal authority. Today we have the level practices that need to map the size. However, we believe that in the future the registration of the infection can be much better guaranteed and framed within the registration strategy through Healthdata.

With signnet.be, the Scientific Institute of Public Health appeals to the public. The purpose is for people to record where and when they have suffered a turkey bite, whether they have suffered an erythema migrans, the so-called red circle, and also what they have caused to suffer a turkey bite. Not everyone goes to the doctor with that bite, especially if they don’t get a red ring. However, the site is not yet known enough to gather sufficient data.

The resolution was a warm call. In the same week that the resolution was adopted, the WIV also communicated that the site must be more promoted and that an app will be developed, which will enable people who are walking or playing and have suffered a spell bite, to report via their smartphone on the website of the spell.

This is a very important step forward for the awareness-raising framework in which the federal government has also taken responsibility.

What happens to the Tick is the responsibility of the Provinces. They have the task of mapping the extent to which the tick population is increasing, whether their biotops are increasing or growing, as well as the extent to which the tick population is more or less infected with the borrelia bacteria.

It is therefore desirable that they examine the extent to which signs are destroyed in an environmentally-friendly manner, in order thus to somewhat address the problem.

We welcome the unanimous approval of the resolution in the committee. I would therefore like to thank all the committees, including the members of the opposition, for their constructive contribution to the debate.

As mentioned earlier, the hearing on the issue was suddenly very emotional. We also listened to patients. My colleague then noted that it is especially important to also listen to what scientists are pushing forward. We can only approve of those words. Evidence-based medicine is the path we need to continue.

However, I would like to emphasize here, above all, that the path of suffering of many patients has also touched our hearts and that we want to adopt the resolution for them today in particular, in order to remove their path of suffering, to ensure that they see light in the tunnel and to remind them that there is hope. With this resolution there is hope.

We look forward to your further discussion of the resolution. You have already taken a lot of concrete steps. We will continue to follow the issue closer.

To all Lyme patients in our country, I would like to insist. We are fighting for them and we continue to do so.

Mr. Speaker, Mrs. Minister, we vote today on a resolution that has taken a long and often difficult path. Despite the obvious needs of the patients who have to bear the consequences of Lyme disease, which have been described several times, in the past, it turned out to be not always equally important for everyone. We are therefore very pleased that the resolution will be voted on and we hope that you, Mrs. Minister, will also implement it as soon as possible.

Lyme disease is a disease that we all know. The major problem for patients is that they are too often not recognized. Patients are often treated for years for everything and everything, before one discovers that they actually suffer from Lyme disease. The consequences are clear: the patient does not get better, is often accused of not really being sick, suffers from side effects, and so on.

The non-recognition actually has two major causes. First, there is no truly closing test yet, which is why I am also very pleased with the call to continue looking for new, better tests. One can only act efficiently if one knows what is going on. A second cause is often that there is too little attention or knowledge from the general practitioners, causing them not or too late to think about Lyme disease. That is not the doctors’ unwillingness — so it is ⁇ not a blame to them — but because there is so much uncertainty, it does happen often. More attention, especially in high-risk areas, is therefore desired.

I am also very pleased, colleagues, that in this jointly supported text, the question posed in our resolution on the voluntary employment of patients has been addressed. In the run-up to our resolution, during the hearings and many meetings, it turned out that it was difficult for many patients to remain active in society, both socially and economically. Each patient has different options, which therefore depend on the moment. One day is good, the other can be bad.

Because patients who see it want to work on the good days, we need to support them in this. This requires specially designed tracks. It is impossible to predict how the ups and downs will go.

Mrs. Minister, this resolution puts several questions to the government, which can help patients go far ahead. We hope that these requests can be met, and we therefore approve this resolution with conviction.

Mr. Speaker, Mrs. Minister, dear colleagues, before speaking on this resolution, I would like to recall that a few years ago, we set up a plan to help people with chronic diseases. This plan was put in place because, at one point, parliamentarians and the Health Committee of the House, decided to listen to patients, people who presented suffering, pain not always understood, not properly treated. They did not feel heard.

It is from there, from bizarre diseases: fibromyalgia, lupus, etc., because we had decided to dare to open the doors, to look at these patients with an eye taking into account their unheard suffering, because we had also allowed a cross between the different points of view of specialists and experts, that eventually, we have put in place policies that allow them to take into account in the long term, caring at the limit of the label of the disease that was placed on their back, but taking into account their suffering and their complaints.

We also worked in this way on Lyme disease. People came to our meeting to tell us, “We are not heard while we suffer and we express complaints. We do not understand that we have not been heard or taken into consideration.”

The committee therefore agreed to hold hearings. These hearings delivered many elements to improve our knowledge of the subject, but also highlighted, in a way that frankly I had never seen before, ⁇ aggressive conflicts between doctors, between experts with different visions, analyses and perspectives.

It is true that as parliamentarians, we are misguided when something happens like this, since we are not ourselves doctors or scientists, nor are we faced with the decision of the proper care of these patients and the proper treatments.

On the other hand, we have a responsibility to ensure that the knowledge and consideration of these people is improved. We need to put in place the necessary tools to ⁇ this.

In this resolution, which we voted in the committee, we can only support all the efforts that are needed to improve the recording. This need to register vector diseases – whether carried by a vector, the tick in this case – is recognized by the World Health Organization (WHO).

It is necessary to improve the recording and recognition of all those people who, as a result of a bite, develop a range of symptoms that can go up to Lyme's disease. Information and prevention must also be improved at the federal level, involving communities, regions and municipalities. The best way to protect yourself is to take care of your clothes, to be careful when you go for a walk, and to examine yourself when you return from the walk to remove the ticks, if ever there are those who have decided to settle on your waist. Another important element of this resolution is to ensure that knowledge about the evolution of these ticks populations is improved, in order, if possible, to ⁇ their elimination.

Dear colleagues, I regret that the Commission has not incorporated the climate dimension into the elements to be taken into account in this fight against the evolution of tick and the solutions to this Lyme disease. I was answered that it was because the climate issue was wider that it was not desirable to include it in this resolution.

If, for a topic like this, the influence of climate change, as the WHO and the European Union say, the rise in temperature, the change in the humidity rate in different places and especially in Belgium, is not taken into account, then we will not be able to manage the evolution of all those vectors that are ticks, mosquitoes and other insects and animals that carry microbes, bacteria and viruses.

They will survive with us when this was not possible before, because the temperature has risen. Therefore, taking measures to limit global warming is part of prevention, with the aim of limiting the proliferation and survival of these disease-carrying vectors.

Finally, I would like to intervene on a last element and remind that it is the patient who should be at the center of our concerns. It must be integrated into the stages of research and work to improve diagnosis and treatments. But in order for it to be properly supported, the behavior of experts must change. I think of health professionals in particular.

According to the resolution, multidisciplinary work is indispensable. This is obvious. The patient must be at the center of concerns and integrated into all devices. But beyond the multidisciplinary dimension, it is necessary that policy brings health experts, experts in the field of disease-transmitter vectors (the Institute of Tropical Medicine, doctors, the Scientific Institute of Public Health) to meet around the same table. As has been said, there are different currents in this matter. According to some experts and doctors, a three-week antibiotic treatment is sufficient. According to others, a one-year treatment is necessary. In this latter hypothesis, there may be fears about the antibiotic resistance of the patients concerned. Others still believe that it is necessary to strengthen the immune system, starting from the principle that if an individual develops this disease, it may be because his immune system was not resilient enough. It is therefore important that the policy establishes the arrangements enabling experts with different theoretical, scientific and biomedical orientations to confront their analyses, their methods and to approach the problem of diagnosis and treatment in a differentiated way, around the same table, with patients.

This amendment, which my colleague Anne Dedry and I had introduced, was rejected in the committee. We re-written it in response to the criticism that had been issued. They said that it wasn’t up to politics to gather the researchers themselves. A research is always going like this, researchers gather together and mix views. We know that this is not the case here. Politics may not be able to bring them together on its own, but it may in any case put in place arrangements that bring these experts, through the existing bodies, to work together and to confront each other.

I will add one last point on this subject. Multiple references are made to evidence-based: of course, but the evidence-based of ten years ago are not the same as those of today, and those of today will not be the same as those of tomorrow. Science is constantly evolving on condition that one dares to look at new parameters, and confront another, equally scientific, but that works differently.

In any case, if we allow the conflicts between experts to continue today, and that is why we do not take the patient into account, that we do not listen, and that we put him in the midst of these conflicts, it is clear that we will not fulfill the first mission that we have given ourselves, that is to answer the complaints of these patients and do the utmost to help them to control this disease. We must ensure that public health agencies can truly fulfill their mission of improving the health of our citizens.

However, we will support this resolution because it is the result of collective work. It lacks this dimension, but it nevertheless takes back some essential elements.

I look forward to today’s adoption of this resolution. This is the first time the House has adopted a resolution on Lyme disease. It is not by chance. The World Health Organization and the European Union say, through their surveillance devices: this disease is expanding.

It is not unknown, but deserves special attention and attention. I think that’s the point of today’s resolution. She is shooting a projector. Parliament calls for this vigilance with regard to this disease, because what we know is that it is better to prevent it than to cure it, and that we have the means to prevent it, detect it and prevent people from getting infected with borreliosis. We have ways to avoid the bite of ticks.

I remind you that we are in the period when this contamination will be most likely to occur since it occurs in spring and summer. I speak to my colleague, Damien Thiéry, since I see that he is listening to me. It is important that this signal be launched today because we are in this particular period.

According to the Atlanta CDC, which is still not anyone in disease surveillance since it enjoys a global reputation in this regard, there is a likely link to climate change. Attention must be paid to the further development of this disease in the coming years, in parts further north, in Europe, and at higher altitudes than before.

All the work of patient associations must also be emphasized. They were the ones who warned us about this disease. Even if sometimes counter-truths or things that appear to be nuanced in the analysis are carried out, it is important to be able to listen to these patients in their distress, in their journey throughout the health system, to check how in the future we can better help them and better respond to their complaints, and above all, once again, to ensure that this disease is better prevented, better detected and better treated, in short, whether it is a public health priority with a true public health strategy.

Mr. Speaker, my speech will be brief because our excellent colleagues have already expressed themselves, in particular Damien Thiéry who has very well described the reasons why our group will vote on the text of the resolution which resulted in the work carried out in the committee. Since I know people who suffer from this disease and have been able to participate in the first hearings, I would like to emphasize two points.

With this resolution, we reaffirm the will of our Parliament to be listening to the suffering of the victims of this disease.

This suffering is not only physical but it is also moral and psychological. These people also suffer from misunderstanding, sometimes unbelief, of their relatives and their professional environment.

With this resolution, we provide an initial response to a public health issue by also asking researchers and medical professionals to try to reconcile their views with undisputed scientific advances.

On behalf of my party, I can only support this proposal. Unfortunately, I was not able to attend all the debates. I have read the texts. I support Mr. From Germany and Mrs Gerkens who drew attention to the problem of climate change. In the future, the rules may need to be amended depending on what happens.

We will support this project with great enthusiasm.

It is a proposal for a resolution and therefore the government does not have to respond. Does the government ask for the word?

Mr. Speaker, I would like to thank the members of the Committee on Public Health for raising a topic, namely the chronic Lyme disease, which affects a large part of our population. There was also no effort spared to invite numerous experts. It has already been said here, unfortunately, science is not yet unanimous about the causes and much less about the cure for Lyme disease.

The Scientific Institute of Public Health is very committed to mapping the disease. I think it is necessary for science to strike a tooth to finally be able to determine the cause of the complaints in humans.

As has been said, what is not there today, may be there tomorrow. Science is evolving at a rapid pace. The political map rightly addresses a social problem and it is now necessary that all forces unite to encourage and support the scientific efforts.