Dr Fredi Wiesbauer, vice president of the Swiss Mucopolysaccharide disease (MPS) Society met with Health Europa and explored the Swiss experience of hosting such an organisation.
While at the Austrian MPS Society’s Therapy Week event in Hinterglemm, Dr Fredi Wiesbauer, whose daughter suffers from mucopolysaccharide disease (MPS), could be found offering dental advice to patients and their families in one of the many sessions organised by Michaela Weigl, the society’s head.
Wiesbauer, who is also the vice president of the Swiss MPS Society, formed part of an international attendee list, all of whom had come together in the Alpine region to share their thoughts, experience and expertise during what, for many, was a holiday as well as a week of therapies designed around numerous different important areas.
Wiesbauer met with Health Europa on the sidelines of the event, where he discussed how many of the issues facing patients suffering from mucopolysaccharide disease in Switzerland are similar to those experienced in Austria, while there are also others.
How would you describe the Swiss MPS Society?
It is a relatively small organisation, with about 15 member families (meaning that, in total, we now have about 40 members). There are about 45 patients with mucopolysaccharide disease in Switzerland, so this means that only a third of them are currently members of our association.
While, in the French-speaking part of Switzerland, the VML (Vaincre les Malade Lysosomales) caters to patients, we are nevertheless a little concerned about the membership numbers; in recent years, very few people have joined the society, and we attribute this, at least in part, to the information that is available on the internet. That is, many people feel they can gain the information, guidance and support they feel they need online, rather than from being a part of a society. And while, of course, there is information available on the internet, MPS societies can offer so much more.
There is also sometimes a concern that the families of patients who are receiving Enzyme Replacement Therapy (ERT) and are starting to feel a little better think that they no longer need to be a part of the society. But again, MPS societies are there to provide support in many different ways, and patients with mucopolysaccharide disease, regardless of the type or extent of the disease, really can get a lot out of being a member of the society.
Are there things you can take from the Austrian MPS Society to help the Swiss chapter grow?
We always attend the Austrian MPS Society’s Therapy Week, and we really learn from how things are set up and how the different personnel and therapists work so that this can influence the way that we treat our patients back home.
We also work closely together with those in Germany, for instance, by translating English publications into German and vice versa, so that the information is more readily available to those who need it. And to avoid duplication of work, we also distribute the Austrian MPS Society’s publications to our members.
Perhaps the most influential part of the Austrian society’s Therapy Week is the atmosphere of friendship and family; it is a truly international meeting here: it is not only Austrian patients and their families who attend, but also those from Russia, Bosnia, Germany, Serbia, the Ukraine, and more. Along with that, we have attended – as have others – from Switzerland, and so we are growing together. We are all here together and are learning from each other.
The high price of medication, confounded by issues around health insurance policies are particular problems for patients with mucopolysaccharide disease in Austria. Do patients in Switzerland experience similar problems?
There is a saying: ‘Leave Europe, become a Swiss,’ and this is something that the UK may come to experience post-Brexit. And it’s not a great situation to be in; it can be stressful to always be the minority, external party in things like the European Network for Rare Diseases, for which Switzerland is now only a joint member. Essentially, there is a sense that Switzerland, as a non-EU member, is left out of any discussions which are important or difficult, and we are reduced to the position of begging to be involved.
Furthermore, the European Union has, in general, relatively simple common laws dealing with health issues, while the Swiss health system is relatively complicated, being broken down to the lowest possible level of cantons, which are technically unities of anywhere between 25,000 and 500,000 people. So, whenever permission is required to obtain something like ERT, for instance, you might end up at a hospital that serves 25,000 people and which is in no way competent enough to make such high level decisions.
Within this quite complex landscape the Swiss MPS Society is working very hard politically in order to affect some sort of change. This is evidenced perhaps by our media presence: we are continually trying to place something in a newspaper or TV station to promote awareness of the disease and what we believe needs to change.
During the Austrian MPS Society’s Therapy Week, you are using your profession as a dentist to help some of the patients. How are you approaching this?
Yes, I provide minimal dentistry to the patients here as a way of saying thank you to Michaela Weigl who hosts the event, for allowing me to attend with my daughter, who has MPS – just as many other people from families including mucopolysaccharide disease patients draw on their areas of professionalism or expertise to help out.
In my practice in Switzerland I treat many patients who have rare diseases and I therefore have experience in this area. Most children are wary of dentists – some are even scared – and the same is true for the children who have MPS, and so I hope I make things a little easier for them because they know me and are a little more at ease.
Children with mucopolysaccharide disease have special issues when it comes to their teeth: many have dental crowding; they have, usually, a very late breakthrough of the permanent teeth; and every now and then they have deformed teeth. They also need to take special care to keep their teeth and mouth healthy. And so I take a look at their teeth and can then offer advice and instructions to the parents on how they can continue to take care of this element of their child’s health.
Dr Fredi Wiesbauer
Swiss MPS Society
This article will appear in issue 7 of Health Europa Quarterly, which will be published in November 2018.