Proposition 54K0049

Proposition de résolution visant à lever les freins au don d'organes de personnes vivantes en instaurant la prise en charge de l'ensemble des frais médicaux à charge du donneur.

General information ¶

Author

LE Catherine Fonck

Submission date

July 9, 2014

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

health care income free medical care health costs resolution of parliament organ transplant indemnification public health

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 ¶

March 8, 2018 | Plenary session (Chamber of representatives)

Full source

I refer to the written report.

We have had a very good organ donation legislation in this country since 1986. Therefore, in terms of the number of organ donors we score very well, when one looks at the European.

Of course, the opting-out system is at the base. This actually means that everyone in this country is a donor, except for those who expressly oppose it. This is, for all clarity, a principle that no one of the initiators wants to touch. On the contrary, we see that this principle is finally being adopted in Europe. The Netherlands did this recently.

Today, around 1,700 people are on waiting lists for organ transplants. For many, it is a question of life or death. It is our duty, our duty, to improve the situation wherever possible.

Although the 2007 legislative amendment ensured that the express consent of family members is no longer required, if there is no explicit registration as a donor, they are heard by the transplant coordinator before organ removal can be undertaken. Taking a well-informed decision at such an emotional moment, immediately after the death of a dear neighbor, is of course difficult, that does not need to argue, and that unfortunately still leads to the fact that in about 15% of cases the family still notes resistance. For ethical reasons, doctors are not going to take organs despite the 2007 legislation change. That is very understandable, but it shows that making this dilemma available in advance could mean an improvement in the number of organ donations in this country.

That must remain our ambition: in spite of the good numbers, to do even better, to convince even more people that there is actually nothing more beautiful than that one can still save other lives at the moment it stops for itself. One donor can save up to eight lives. So one can really make a difference.

Today, the number of registered donors is approximately 450 000. Of these, there are approximately 265 000 positive will expressions. Today, the law stipulates that one can make the declaration of will, positive or negative, only through the municipality. That is a problem, because for many people that is a high threshold. Not everyone is aware of it. Furthermore, a study found that a lot of officials who are required to register themselves are not always well informed. For example, many had the wrong assumption that registration can only be done for people who would object.

In the preparation of this bill, it has been examined how to ensure that more people with a positive will statement can be attracted, with attention to the opting-out system. Of course, we should not touch that. Who better than the doctor can play a crucial role in this? A study from the University of Antwerp shows that they themselves are the requesting party and see a huge added value in it. This proposal ensures that the general physician is involved and that he can engage in the debate on request or on his own initiative and involve the family, so that he is able to move immediately to the registration as a donor when the patient makes a decision.

It is our hope that this proposal will contribute to a further and strong increase. Following the committee hearings, there was broad support, both from the transplant coordinators, professors, doctors and colleagues. It was also encouraged to make it also possible for people to register themselves via the eID, via the Internet. In principle, it is a perfect complement to the conversation that can take place with the doctor, so that people can still think about the decision at home, before ordering the registration itself. This was added to the proposal at the last moment.

However, the competent cabinet, of Minister De Block, has been asked to specify sufficiently in the KB in which this legislative amendment should be further elaborated, how to regulate the access for people who want to do it themselves. This is, of course, essential to avoid resistance. People should continue to make an informed decision, even if they have not had a conversation with a doctor. There must be a sufficient basis for informing before one can make the registration.

I would like to thank the colleagues of the committee for the constructive cooperation in this matter. I would also like to ask one thing to all the colleagues present, and even to those who are not there: let you register as soon as possible. We all become politicians in order to change something in this life. This can really save lives.

Mr. Speaker, dear colleagues, in my turn and on behalf of my group, I would like to tell you how pleased we are with the work that has been done in committee in relation to this bill which, ultimately, was long awaited. Some will say that we are not yet far enough in the move but I think there is a willingness to move things forward as we usually do.

In this case, I sincerely think that the most important thing is to remember that the original philosophy of organ donation has not been touched. Why Why ? Because, simply, in terms of organ donation, Belgium can be called an example at the European level, although, of course, we can always do better. When I say example, this means that at the moment there are 30.6 donors per million inhabitants in Belgium, which is thus the second European country behind Croatia.

Thirty donors per million inhabitants, of course, is not much. This means that fundamentally, an information problem exists. Or, some patients or some donors are afraid to register with the municipal administration. It is also important to note that in some municipal administrations, there is not always a specific attitrated service that allows the transmission of information or request in a confined way, i.e. in full discretion.

The amendment proposed today will allow consideration of other means than the declaration at the municipal level. It will now be possible to make this statement with the treating doctor and also through the electronic system (a personal approach). These are two truly fundamental advances that also respond to a request from experts who have been consulted, healthcare providers, associations and people who have faced the problem. Ultimately, when a patient or a deceased person has not previously given their consent for organ donation, the procedure, which is not easy, must be done by the caring staff towards the family.

The family, having not been aware of the will of the deceased of his living, is in embarrassment. That is why, in 15 to 20% of cases, the family refuses to donate organs while the deceased may have been in favor of it but had not taken the necessary steps, due to lack of information.

Here, I summed up the will that we had within this bill to move forward, to allow and encourage all citizens to practice organ donation and, above all, to make the declaration before their death.

Mr. President, colleagues, both Mrs. Van Peel and Mr. Thiéry have very clearly outlined the context of the proposal and demonstrated by means of figures the need for more donors in our country. Therefore, we will definitely remain a requesting party in this area.

I would like to thank the committee members and the President in particular. They have contributed to the fact that in the committee meetings we were able to submit a single global proposal on the basis of various initiatives with often different input. After all, we were convinced that a political discourse on the subject was from the evil and shared a common goal, namely to register as many inhabitants in our country as possible as a donor.

With this proposal, we are moving forward. There are three gateways for donation. This can be done, first and foremost, through the doctor. Second, there is self-registration online and, third, there is registration through the municipal administration.

My party considers it important that there is a role to be played by the family doctor. After all, on the one hand, there are still many questions with the public around donation. On the other hand, the preparation of such a file still takes several months, which makes a lot of questions.

The ignorance of the legislation on organ registration and organ donation is still very large. We believe that the doctor can play an important role in informing. He knows the patient and his family and surroundings. Therefore, it is important that the donation can be included in the medical record.

As Ms. Van Peel has already cited, a motivated, good registration should better prevent the opting-out. After remaining stable for years, the number of people who withdraw from the system or declare not to be a donor is increasing again in 2017 by about 1 % to slightly more than 13 %, or almost two hundred thousand people, who very consciously declare not to be a donor. Family rejection is also increasing. That worries me.

The combination of exit and family refusal should ⁇ not cause us to get into trouble and get fewer registrations and donors.

Belgium is doing very well today. Although we are among the European Member States for most parameters in the first place, the waiting list for among other kidney transplants is still very long today. There are more than eight hundred people on the waiting list for a new kidney. Parliament must therefore do everything in its power to ensure that the number of donations in our country continues to increase. We are convinced that donations through the three gateways are better motivated and registered.

I would like to thank the cabinet of the competent minister, even though no one is present. In any case, there is still some work on the board on data linking through the Rijksregister and the medical file. In the area of municipal registration, I refer to the legitimate concerns of colleague Van Quickenborne. I urge the Minister, her cabinet and her administration to establish the data link as soon as possible, so that we can indeed be registered through the three gateways. I thank you all for the cooperation.

As co-author of the proposal, I would like to take the floor. In addition, we are making existing liberal legislation on this point even more liberal. I will clarify that for a moment. Of course, I am not talking about liberal in the sense of the liberal party, but in the sense of freedom.

Belgium was the second country in Europe after Spain in 1979, in 1986, where a system was introduced in which every Belgian was presumed to be an organ donor, unless he or she opposes.

It is remarkable that there is very little discussion about it in our country. I don’t know what the communists will do next at the vote, because that can never be predicted in our country. Usually they vote against. I think we will probably approve the proposal soon with great unanimity, while a very intense debate was held in the Netherlands a few weeks ago. I think the Belgian vision at that time achieved it with one vote. The Netherlands is much more critical when it comes to organ donation. Peter Vandermeersch, you may know, former journalist and editor-in-chief at De Standaard, now at NRC, wrote in a column in De Standaard that he would rather not want that and would rather decide for himself. It is remarkable that in our country we keep this liberal philosophical tradition alive. I find it very pleasant to be able to confirm, just as I have been able to read that Minister of State Miet Smet wants to die in a dignified way. We are slowly reaching a wider consensus in our country and that is a good step forward. It is not that one dossier has to do with the other, but in a parliament, philosophy can also be discussed.

As colleague Muylle said, in Europe we are among the best in the class. However, we have a waiting list of more than a thousand patients, so there is definitely more to be done. Citizens know too little that if they are spontaneous organ donors, the family can still show resistance. If the doctor does not have explicit confirmation, he should always ask the family or who has objections to organ removal. Only with an explicit registration can people counter this potential resistance. Therefore, people also need to effectively take another step. Until now, this was only possible in the municipality.

Many of you may cumulate and also exercise a local mandate. Sometimes a cumulative also has an advantage, I think. Well, this way you can find out something about the registrations. In Bruges, there are only 250 registered people. We also had low figures for a long time. We then undertook a number of actions, which can be inspiring. We now have 2,500 registered persons, which is one of the best per capita figures in the country, even though there are only 2,500 on a total population of 76 000, which is still a very low figure.

The idea of the proposal was to ensure that a donor could register through multiple channels.

The registration through the channel of the general physicians was already explained by colleagues Van Peel and Muylle.

We have chosen a third channel, that of self-registering. This can be done in two ways: directly at Orgadon or through the digital locket of the municipality. Most cities and municipalities, especially in Flanders, have a digital lock that works well. Documents can be requested through that lock and they can also be received digitally immediately.

One could give that lock an additional function, so that donors can register. We have already said in the committee that this must be done with full awareness. In other words, people need to know what they are doing. The system can be applied in both directions, to confirm that you are an organ donor or to sign out.

Colleagues, a donor who registers, can save up to eight lives. The step that people take on that level is therefore a very important step. We will support the bill later. I am very curious whether that proposal will be unanimously approved, or whether someone will oppose and vote against it for life-saving reasons.

Mr. Speaker, I think that Mrs. Van Peel has made a ⁇ good analysis of the current situation. Thanks to our progressive legislation, we do ⁇ well in organ donation in Europe. I think we should be proud of that. This, by the way, applies to many progressive laws on ethical issues.

What is ⁇ beneficial to us in the present bill is that the registration through the general physician creates a forum where it can be discussed in advance, in this case with the general physician. Hopefully, this will also ensure that there is a broader discussion in the family and the circle of friends, so that everyone knows that one wants to be a donor.

Sometimes it goes wrong, as colleagues have already noted. In case of sudden death, relatives or relatives in a moment of great sadness or restlessness make a different decision. In my view, the proposal represents a very favourable evolution and creates a good forum for moving the discussion in society.

We are somewhat concerned about self-registration via eID, even though we are in favour of it. After all, there is a risk of negative registration. This problem needs to be resolved through the Government’s KB. We ask to use this method very accurately and carefully to jump.

Overall, we fully support the proposal. We will approve it.

Mr. Speaker, I would like to thank my colleagues, including Ms. Van Peel, who submitted proposals on the facilitation of organ donation. This is a concern we all share. The goal is that donating organs from deceased people can save the lives of other people.

The provisions that have been adopted and which aim to facilitate, but also to extend, the ways by which one can confirm the will to give access to organs after death, are ⁇ interesting. Indeed, the current provisions on which I had worked with the ministers of the time provide for a presumed automatic agreement and the impossibility of organ donation in case of formal opposition.

Unfortunately, the facts show us that it is often difficult for family members, when the deceased has not made a statement in this regard, to give their consent. In doing so, doctors encounter a refusal to donate organs.

The provisions of the bill that was adopted will simplify the administrative procedure at the level of the municipalities, allowing the registration via the eHealth platform, thus through its computer, but also through the general physician, formula to which I believe a lot. In my opinion, the latter is important because it allows the doctor to address people while they are alive, but also to explain to family members what will happen as well as the positive impact of the measure. In my opinion, this really contributes to a positive positioning in the matter and to the dissemination of this necessity.

Many municipalities in Wallonia and Flanders as well as the Wallonian Region have engaged in this mobilization, this awareness of citizens and take advantage of the elections to distribute forms to the citizens who come to vote thus allowing them to exchange their points of view when they are in the waiting line.

I hope that these steps will continue and that the Federal Minister of Health will organize a real information campaign so that citizens know that it is now easy to register, to mark your will. It will also be necessary and above all that this information campaign helps to persuade the interest of organ donation and to free people from their fears.

Donation of organs is a very important issue for us. You know that we have submitted a whole series of texts on this subject, not only since this legislature.

We are clearly in favour of making all registration procedures easier. Facilitating these steps for donors can only be positive, since it also facilitates organ harvesting.

The minister now has to take a series of royal arrests. I dare hope that these will not delay because, without them, this provision will not be applicable. If I draw your attention to the fact that it is necessary for the minister to take these royal orders quickly, it is because I find, always with regard to organ donation, that another royal orders have been waiting for more than two years, despite the promises, commitments and press releases of the minister saying that it is already done, while there is still no royal orders taken at the Moniteur. This involves the donation of organs from a living person.

You say that Belgium is at the forefront and that its figures are good. More than 1,200 patients are waiting for a transplant. This is huge and, above all, it must be measured that these patients most often stay for years waiting for a transplant and undergo, meanwhile, ⁇ heavy treatments.

Removing today all the brakes that exist to the organ donation of his lifetime would really allow us to have, tomorrow, a larger number of transplants available for patients. Donations of living organs are made in Belgium, but they are still limited. In fact, there are a lot of brakes because when you are an organ donor, it costs. This costs not only in terms of medical expenses, but also in times of interruption of work, sometimes with the loss of his job. Such situations are proven. In addition, many other difficulties can arise on the side of insurance.

These are so many proposals that we have submitted to lift the brakes to organ donations of his living.

Regarding the medical costs associated with organ donation by a living donor, the minister has repeatedly announced, under my impulse, that she is taking a royal decree on this matter. Despite his successive press releases, announcing that the thing was going to be done, even specifying the date, no royal decree has yet been taken. I dare hope that this decree will finally come out and that the other royal decrees, which will allow the implementation of the bill we vote today, will appear soon.

My draft resolution (DOC 54 0049/001) was attached. I asked the president to disengage her. I am referring to the President of the Health Committee. Indeed, we have planned to reintroduce on the agenda not only this proposal for a resolution, but also the proposals for legislation concerning organ donation from a living person. We talked about it this week in the committee. We would like to be able to program them from next week.

I dare hope that on the part of organ donation, we will be able to move forward together, majority and opposition, and that these proposals will not be put aside simply because they come from the opposition. I dare hope that, on such an important topic as this, we will have the courage to work together.

Mr. Speaker, as agreed, the proposals are on the agenda; you will receive it on Tuesday morning.