Interview Jean-Jacques Cassiman


ALS Liga talking to Jean-Jacques Cassiman

Jean-Jacques Cassiman has already had a long career as a researcher in the field of human genetics and at this stage of his curriculum you'll find him at the Department of Human Heredity. Aside from that he's also the current chairman of the Flemish Liga against Cancer (Vlaamse Liga tegen Kanker).

How much does research cost?

J-J Cassiman: Without funds you can't do research, that's obvious, and research is expensive. You have to know that one scientific employee costs about 100.000 euros a year. If you want to put 10 people to work then it's 1 million euros.

ALS: And is there a difference between pathologies, according to when the research is more or less working on something specific?

JJ C: It depends on the stage the research is at. I don't know ALS, but a good example is cystic fibrosis. Before they knew it was an exclusively hereditary disease, few were interested to research it. But the day the gen was there, you know you'll get somewhere with your research. Once you have a clear starting point, you can expect results in the long run.

Research specifically for ALS

ALS: You actually give hope to people with ALS? Going by the research led by Peter Carmeliet on a gen in which he found things, you could hope that there will also be results for the ALS issues.

JJ C: He has a specific lead and that's very important. It means there can be a specific research, it's not just searching chaotically. During the research you sometimes find additional things that turn out to be important, even though they may not have any direct connection to the first thing. If you start your research you eventually don't know what's responsible for the different forms the same disease can take. They do get the same name, but the reason why someone shows those or those symptoms isn't necessarily the same for everyone. Peter Carmeliet's research is equally important as finding the first SOD gen back in the day that played a part in some families.

ALS: In which phase have you worked? Was it the laboratory research?

JJ C: Yes, it was with patients. It consisted of finding out which defect the SOD gen contained. And sure enough, some have a rare defect.

ALS: The familial kind.

JJ C: You notice the defect is only important to a certain group of people and that you have to look for something else for a different group. You can only do that when you have something specific.

ALS: And combined with neurology, are there also different discoveries possible? That you look for a certain disease but discover something concerning another disease?

JJ C: Yes, definitely. That's what's happening in the research about Alzheimer's. They find certain things that are important for both the Huntington and Parkinson' disease. So, it's important to find things that could be of importance for completely different illnesses. Just like someone who is working with an entirely different disease can discover something that's important for ALS.

Neurological research in general?

ALS: What most ALS patients feel is this: they don't do much for us, they aren't searching for us. But a lot of things are done for us. WE see that, but ALS patients don't, and they have the feeling that no one is searching because nothing is found.  We should actually tell them that the target audience they're searching for is much wider, that it involves Parkinson, Alzheimer's, ...

JJ C: Of course, neurological research of neurons, the way they function, of all the cells that are part of it and that make sure they function correctly, in the end that's also relevant to ALS. There are much rarer diseases than ALS where things are much worse, where nothing happens at this moment. And the main reason is that when there's no money you can't work on it.

ALS: But that's why we do end up in a wider target audience, which is more interesting from a commercial point of view.

JJ C: Of course, Alzheimer's is a big problem what with the aging of the population, with the number of patients that develop Alzheimer's and so on. It's in the media a lot: there's a lot of research about Alzheimer's and a lot of money is spent on this research. But have we found anything tangible yet?

ALS: That's what we also always tell our patients to give them hope: they do research, but the other diseases don't have a solution yet either. It shows how difficult it is.

JJ C: Yes, and they're working on it on different levels. Now they've begun to work on spinal cord injuries, to remedy them with stem cells. The first tests have started, I don't know any results yet, but apparently it works on animals. It allows to learn how those neurons function exactly and the importance of the cells around it, to make it function entirely correctly. And in the end that's also relevant for ALS of course.

ALS: In the field of stem cells the scientists have many various kinds of views. You have just as many who say 'it'll never work for ALS' as you have those who say 'it just might work for ALS'.

JJ C: Yes, but you can't rule it out, it's way too early. There is way too much research that has to be done to decide which cells we're going to use. No one today can say: 'these are the best'. But there's research and that's what's most important. And whether you'll ever be able to apply it to ALS I don't dare say, after all I'm no expert when it comes to ALS. But I definitely don't rule it out. The first attempt will be to stop the progression of the disease before they can cure it.

ALS: But in the meantime the longer the research with stem cells on ALS stays out, the more time imposters get...

JJ C: Yes, that's typical! All chronicle diseases are being abused. They're taking money out of people's pockets because those people are desperate. They try everything, including homeopathy. Aside from informing sufficiently and saying their remedies are useless, there is little we can do about it.

In which domains of ALS does research have to take place and in collaboration with what?

ALS: There has to be a bond of trust somewhere: it has to be a reassurance that someone is working for us. But to many patients that's not the case. We notice a lot of negative reactions on our forum.

JJ C: You can't separate the research that's happening here from the research that's happening all over the world and which our researchers are in touch with. On one hand there's a lot of contact, but on the other hand there is still a lot of competition, which is healthy because it stimulates the progress. There is no one who when they see the chance to find something – whether it's for ALS or a different disease – will say 'that doesn't interest me'.

ALS: Shouldn't the worldwide ongoing researches be more coordinated though? We do have the impression that a professor for example in Mexico begins a research that has already begun here in Leuven with clear results.

JJ C: No, I don't think this is a problem. On the contrary, what that man in Mexico is doing will spread like wildfire here. It's not because we have a Carmeliet over here that the solution might not come from Mexico. So the more people work on it the better. And those people go to congresses, argue, fight, disagree, ... But that's how a research advances.

ALS: But is that coordination really there? Let's say Christine Van Broeckhoven found something in the nerves, in the neurons. Can Carmeliet go to Christine Van Broeckhoven and ask: 'How far along are you? What did you find? Where should I continue to work on? Where should I go into more detail?'

JJ C: Yes, that's possible. It could happen that she refuses to share that information at first and wants to write everything down first and get it into professional literature. That's a very normal way of working. But I know plenty of situations where people pass along information that hasn't been published yet because you know the people, because you trust those people and know they won't deceive you. After all, you have to watch out a little with people you know less well. There are imposters too or rivals in the field just like there are different types of people in all professions. But looking at it on a global scale this is going smoothly. Our people work well together with the scientists from different countries.

Research funding by the government?

ALS: Do you also have an eye on the budget of the ALS research? Do you think it's enough?

JJ C: There is never enough.

ALS: And those messages last year about the federal government closing the money tap? Does that have any consequences for the ALS research?

JJ C: For all researches, including the one about ALS, that much is obvious. We're still not at the level of government investments in research we should be. They always strive for it, but scientists protest too little. The government uses big words such as: 'Innovation and research are extremely important for our country' and yet they close the tap.
Research is extremely important to find innovating things for our country. From a political point of view it's not interesting because you can't say 'I'll invest in a research now and by the time the next elections come around I'll have results.' You need people who want to invest in research on the long term because it can take ten years before there is any result.

The quality of research in Belgium?

ALS: Belgium has a global reputation of good researchers, aren't we in third place?

JJ C: Definitely. But in what place is difficult to say, because it depends on the domain. But we definitely shouldn't be ashamed, on the contrary.

ALS: And can that be threatened by several recesses?

JJ C: Not threatened in the sense that it would disappear, but threatened in the sense that there are fewer possibilities and then you can't attract as many people.

ALS: And that good people search for a good offer somewhere else.

JJ C: Yes, but you can't exaggerate that. Belgium is a small country with limited possibilities. So we can't keep all the good scientists we generate over here. There's been a period where they brought back good scientists, that's a good thing, but you see very clearly that at this moment the universities aren't functioning like they are in the United States. We don't have the same budgets. We simply can't pay enough people, so we can't keep them. But if they're good and produce in Canada or the United States or France then the place doesn't matter. As long as there's a result!

ALS: But it does remain important that universities cultivate good people?

JJ C: Absolutely, it's their most important role: to do good research and shape people at the same time. That way you notice that the Belgians who are abroad, especially in the United States and Canada, perform really well. But we're not yet performing according to the English standards for example, they perform better. Because of larger budgets on one hand they can, on a global scale, extract more money for research which means more researchers as a result. On the other hand the English can do more with less money because they can recruit from a larger amount of researchers. The Chinese do even better! But we are a smaller country...

ALS: But now you're talking about science in general. When we look at the ALS field however we see that Belgium is one of the leading researchers, in the entire world even. Peter Carmeliet works for the John Hopkins Institute and Prof. Robberecht from the KUL works with him as well. Those are things to be proud of, aren't they!

JJ C: Absolutely, we shouldn't be ashamed, on the contrary, but we don't have the opportunity to put many groups on the ALS project.

Which attitude should the ALS Liga take in that field of research?

ALS: We try to contribute by gathering funds. Like this we have 20.000 euros in our fund for researches with which we support both young as well as recognized researchers. However they remain drops in the bucket.
We're not subsidized, which does give us a lot of power because we have nothing to lose. We're obliged to stand up for our patients, but where and how can we look for additional financial resources?

JJ C: (thinks it through) I can give an example that works very well for neuromuscular diseases in general. A patient union in the Netherlands successfully started up a meeting of experts in neuromuscular diseases. By gathering experts they succeeded to create more international cooperation and it led to something. I think this is a very good example.

ALS: Around the globe such a meeting about ALS exists and starting from December last year we also have a member in the Board of the ALS/MND Alliance (the umbrella organization). The Liga filed its candidacy to organize the International MND/ALS Symposium in Belgium in 2013. The MND/ALS also publishes a book every year containing relevant articles. At the meeting the authorized people are rounded up to go over the subjects from the book in an attempt to cross-pollinate.

JJ C: What I'm specifically thinking of right now: why not attach an expert meeting to that symposium in 2013. There you can gather the best from the field (10 to 15 people) separately because the communication, interactions and cooperation can be improved. Concretely: bringing together Carmeliet and other top experts would be an enormous contribution.

ALS: We also keep in touch with the pharmaceutical industry and the political world, but that's the sort of world that turns around very quickly.

JJ C: I don't have any issues with the industry. I do have issues with patients unions that are exclusively financed by the industry, because that isn't healthy.

ALS: Some patients unions could benefit from it, if there's a medicine for their disease. Maybe we'll ever need people to put a product on the market.

ALS a rare disease?

JJ C: Are you keeping track of what's happening with the rare diseases?

ALS: We try to be present, but it doesn't always work out.

JJ C: To return to the subject of politics, to Vandeurzen for example: ALS is a rare disease but there are more than 7.000 rare diseases  and Vandeurzen is contacted concerning the problems of each of those 7.000 diseases. You can't answer for everyone. So cooperation is important because many problems are the same: from intake to access to treatment.

ALS: You're referring to the orphan drugs here.

JJ C: Yes, if there's a cure it'll be an orphan drug, it's part of a special statute. That's why it's important that a patients organization has been created, RadiOrg, which represents all rare diseases and which you have to be a member of. In the long run RadiOrg has to become a tool to apply to politics.

There are a lot of provisions for expert centers for patients with rare diseases in proposals for a Belgian plan for rare diseases and there are more resources provided to admit more patients. That way people will no longer have to walk around for years having been diagnosed incorrectly, or not knowing where to go, or being treated by a doctor who barely knows the disease and consequently doesn't provide the best treatment available.

ALS: The ALS-Liga is also a member of RadiOrg, with which we share – just like with the Flemish Patients Platform (Vlaams Patiëntenplatform – VPP) – a lot of common ground. But the issues ALS has are very specific because people with ALS get it real bad when it comes to speed and a total decay. In that sense ALS is a very special ailment.

JJ C: Yes, and yet not entirely true!

ALS: Yet we see that the VPP does work hard for things that benefit us as well. But they're not only working hard for those diseases that develop extremely fast. That's why it's better we keep our autonomy to do things more quickly ourselves.

JJ C: I agree that each of those diseases has its own specification that has to be recognized. You have things that are important for all of them and aside from that you have things that are different for each of them. The solution has to come from research, especially for such diseases.

ALS: But you can improve the life quality!

JJ C: Yes, that's also very important.

ALS: In that aspect the ALS-Liga does a whole lot: we lend all kinds of resources to patients who come to us (wheelchair, voice computer, lifting systems, and so on). We want to fill in the primary care because here too the government works too slow. Sometimes people have already passed away before a wheelchair or anything else is delivered to them.

With our organization we've also been able to invoke an emergency procedure with the minister for the PAB (personal assistance budget). People with ALS don't have any specific retreats, they have to stay home, but only with their own income.
Now we're working on other fast procedures. But it's a utopia to think that tomorrow all necessary resources will be present for each pathology.

JJ C: Yet we will have to keep hitting the same nail and sensitize the politicians so it doesn't disappear into a modern society that those who get such a disease can't be taken care of the way they should be.

In what environment should we work for ALS?

ALS: Where do you put Belgium when it comes to social rights?

JJ C: Lower than the Scandinavian countries, but other than that about on the same level as France and Germany. I think we're doing relatively well, but it could be much better. There are still many supplies missing. Such as the many spaces, homes or rooms that are still inaccessible to wheelchair patients.

ALS: Yes, if only everything were as accessible as here we might have been happy. But there are many places...

JJ C: And official places even! They're starting to realize that and it's slowly getting done but there is surely still a lot of work to do. They've neglected it too long.

Assignment from RadiOrg for rare diseases

JJ C: RadiOrg is the Belgian spokesman of Eurodis, the European organization for rare diseases. All organizations of patients with rare diseases can become a member. With about 70 to 100 members RadiOrg can recover much more than just one organization. The Flemish Patient Fund unites all patients, not just those with a rare disease.

ALS: On February 22 there was a gathering of RadiOrg we unfortunately couldn't attend. Experience however teaches us that it's sometimes a drawback for the ALS-Liga to be a member of a platform such as RadiOrg. We work voluntarily. If we ask subsidies from the government to be able to put people to work, it often answers us: 'Don't you have subsidy through the VPP (Vlaams Patiëntenplatform – Flemish Patients Platform) which has five employees.' But actually they don't do anything for us.

JJ C: No, you won't be able to get fixed subsidies from the government. But VPP and RadiOrg cán as umbrella organizations get subsidies and it's understandable that it wouldn't be efficient to subsidy 2.500 small organizations separately.

ALS: But on the other hand our organization also does things that the umbrella ones can't, such as working hard with politics, filling in the patients' needs with resources, and so on. Such as also for example that convention within the RIZIV for ALS, MS and Huntington's disease patients, which happened partly because of our hard work. And to work hard you obviously also need the tools. And those are specific things that don't happen because of those platforms.

JJ C: That's right. But you can use them later on. The VPP has to keep learning and growing as well. And RadiOrg should definitely be professionalized even further. But if you take such an initiative to the government, which is specific for a certain group of diseases, and you get support from those platforms, the odds will be more in your favor while the initiative, the proposal is yours. If RadiOrg should support that proposal, the minister will be more impressed and more likely to do something than when you have to do it all on your own. That's why I think it's important. But it should be more professional, because a lot of organizations are amateurish and that doesn't give a good impression.

ALS: Yet we're still worried: it happens that the platforms downplay their initiatives because other patient groups are left in the lurch because of their results. What is the advantage of the VPP or RadiOrg in that case?

JJ C: I learned it with the Muco organization. It grew from a volunteers organization into a professional organization that now manages a big budget. It gets a lot of money from which it pays twelve people itself. Muco doesn't get subsidies, but it has an enormous impact on politicians because it works very professionally. But they've also succeeded to progressively surpass their own issues. They're now active in RadiOrg and are part of the management in the VPP. So they pose: 'Okay there are still other diseases that need help as well and we need to help them.' But you need that step towards professionalism, otherwise everyone will stick to their own problem, without surpassing it. And you can only surpass it when working with professionals, with people for whom it's their job.

The volunteer's part

ALS: That's true, but we do a whole lot with our volunteers... I invite you to come take a look.

JJ C: Yes, but I'm not saying you don't need volunteers. (laughs)

ALS: Yes, but that's not how I mean it. You can work professionally with volunteers as well in case you have people who want to pull that initiative towards them.

JJ C: But that also means you need to shape these volunteers! Only then you're being professional, even when those people aren't paid. But if your volunteers are just mucking about! (laughs)

ALS: I don't have the impression that that's the case with us. There have been people however who were flaunting ideas for about two, three days and afterwards no longer appeared. As a volunteer you have rights and obligations. Sometimes you do have to deal with difficult personalities. We could write an interesting book about it. You could almost say that you can make something like (the Flemish soap opera) 'Thuis' at the office and maybe it could even be good publicity!

JJ C: That would definitely be good publicity.

ALS: Then we invite you to come take a look on a Thursday, when we're all energetically busy. During a tour we'll explain what we do and how we directly respond to the patients' questions. If you can spare the time?

JJ C: I'll gladly make time for that.

ALS: Then you can check your agenda and let us know when you can stop by!


Translation: Sara De Roy