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IICPN at the EAU Congress in Vienna, 24-27 March 2004

The IICPN once again had an IC information booth at the annual congress of the European Association of Urology. This was a special milestone for us as it was our fifth consecutive time at the EAU and our first as a new non-profit foundation. This was celebrated by an article about the IICPN in the congress newsletter. The booth was manned by IICPN chairman Jane Meijlink, Joke Scholten and Lynne van Poelgeest representing the ICP from the Netherlands with Florentina Ferreyra visiting all the way from Mexico.

z The IICPN booth at the EAU Congress in Vienna, with Joke Scholten (Netherlands) and Jane Meijlink (chairman IICPN)
 

This year the congress was held in Vienna although this was not the venue originally chosen. The original plan to hold it in Istanbul was changed at the beginning of the year due to the uncertain situation resulting from the war in Iraq and the venue was switched at the last minute to Vienna. This was of course a great disappointment to the organisers in Istanbul who had worked so hard over a long period of time. However, Istanbul will host the EAU congress in 2005, come what may.

This EAU congress was a special occasion since the Secretary General of the EAU Professor F. Debruyne was retiring after many successful years in this function. Professor P. Teillac from Paris will be taking over the helm, supported by Dr C. Chapple from the UK as adjunct secretary general. The EAU has developed into a very important European and global urology association over the years. It has an especially active education programme and regularly includes courses on IC/PBS and pelvic pain.

Guidelines


The EAU produces its own Guidelines and at the opening press conference I asked the panel a question about these EAU guidelines which now cover multiple aspects of urology. I have personally found it somewhat confusing that different urology or incontinence organisations publish their own guidelines or standard terminology and that they often differ with regard to definitions! However, we were told at the press conference that the EAU and AUA would be cooperating in the future on guidelines and this would lead to more international standardisation.
The EAU is also proposing to set up a scientific research fund, whether this will include funding for IC/painful bladder syndrome remains to be seen. But the concept in itself is very welcome.


Frustration

There were large numbers of urologists from Eastern and Central Europe and Russia attending the congress. The stories were always the same: many IC patients or potential patients and little in the way of available or affordable treatment. In some cases such luxuries as disposable catheters are simply not available for intravesical treatment and much infection is caused by re-usable catheters. Many doctors from these and other countries are frustrated at the lack of resources to treat their patients. It is clear that it is vital for attention to be paid to drawing up a list of cheap treatment options for all developing countries and countries where the economy has been hit by war or political change.


Diagnosis


Professor Nordling from Denmark gave a clear and interesting report on IC, summarising developments from the past to the present and explaining the proposed new standard diagnostic procedures drawn up at the Copenhagen meeting last year and to be shortly published in European Urology. Once these have been officially published, it will be interesting to see the international response. We at present have a crazy situation where patients not only in different countries, but even within the same country, are being diagnosed on the basis of different diagnostic procedures. Without standard diagnostic procedures, studies with IC patients become meaningless.

Posters


There were a few poster presentations on IC during the congress. One of these was a study into the efficacy of chronic pelvic floor electro-stimulation (Miniaturo-I) with signs of positive results. Studies with this electro-stimulation device from Israel for the treatment of refractory IC are being extended to more countries. It is generally being suspected by doctors that patient selection is probably the key to success with all neuromodulation and electrostimulation devices. A poster from Germany dealt with histopathologic patterns and distribution of cells and nerve fibres in IC and their implications for surgical therapy. The results of this study supported the hypothesis that IC is a disease of the entire bladder. Another poster from Germany looked into electromotive drug administration (EMDA) using pentosan. From Italy there was a poster presentation on the measurement of urinary and non-urinary symptoms in IC patients.
Although there were some new drugs for OAB, there was nothing specifically for IC. There are some new therapies for IC in the pipeline, but with average development times of around 10 years, it takes quite a while for these to reach the IC patient!


Satellite symposiums

It is always useful to try and attend the satellite symposiums sponsored by pharmaceutical companies on treatment for overactive bladder since some of the OAB drugs are also useful for IC patients as part of multimodal therapy. At the EAU congress Novartis sponsored a symposium on M3 selective antagonism in OAB, Yamanouchi one on the impact of urgency in OAB - listening to the patient, and Pfizer on reclaiming control: clarifying core components of overactive bladder. An interesting aspect of all these symposiums, and indeed many other parts of the congress programme, is the emphasis now being placed on quality of life for the patient. At long last!


Aging female !


On the other hand, the urology world is still constantly talking about the problems of the 'aging male'. Whatever happened to the 'aging female'? Women are said to live longer than men so you would think that the problems of the aging female would receive some priority. We are all still waiting for a urology congress somewhere to have a presentation in their programme entitled the 'aging female'!!
With regard to our own IC info booth, the EAU congress once again convinced me that one of the primary tasks of the patient movement is still to increase knowledge and awareness of IC, so as to make sure that as many patients as possible get the right diagnosis and subsequently the right treatment. Once they are diagnosed, we can then all help them to cope with their condition. A great deal of attention has been focused in recent years on IC patients in the affluent west who are now almost saturated with information. We now need to shift this attention to the less fortunate countries where patients do not automatically have access to good healthcare let alone computers and internet. The primary way of reaching these patients is through the doctors and the chain starts with the family doctor.

With grateful thanks to the EAU for the complimentary booth space given to us and for all their support and also to our sponsors Pfizer, Yamanouchi, Bioniche Life Sciences, Hollister, Pohl Boskamp and Medtronic without whom none of it would have been possible.

 
Jane Meijlink
   
updated 10.02.2006 15:02 © 2006-2018 International Painful Bladder Foundation (IPBF). All rights reserved.