From the Chairperson’s Desk...

The Chairperson writes...

Dear Friends,

We live in an increasingly competitive world – and this also applies to our health care products.

I recently attended an Advocacy Workshop along with colleagues from some of our European NMOs and their counterpart from the world of haemophilia. The message that rings in my ears following the experience of the training provided is KNOW THE ARGUMENTS FOR YOUR TREATMENT!

Being at the cutting edge of medical science we have, to some extent, enjoyed an easy ride up till now with securing the immunoglobulins we need so much to treat our conditions. I can assure you that we need to be alert for the end of those golden days as healthcare costs soar around the world and be aware of growing demands for Ig to treat new conditions. We will have to be able to answer questions that appear blindingly clear to us – questions like ‘What difference does treatment with costly Ig really make?’ – and not just to say ‘Well, it has transformed my life’ – but being able to demonstrate in factual terms that therapy with Ig leads to less time spend away from work or education, less time spent in hospital, and ultimately a cost saving to the health care system. In our NMOs we need to start looking at having factual information to back up our answers. IDF and JMF have some wonderful data – but it is hard work collecting data and collating the outcomes! However, in an era of Health Technology Assessments (HTAs) it is vital that we are all ready to defend our corner with solid evidence of the efficacy of our treatments.

It is partly because of this that IPOPI has just launched a survey of our members – please do work on providing the answers to that survey just as soon as you can. Let us know if you have problems with the on-line facility – we can easily provide versions that you record your answers on before entering them on-line. If you need help, contact David by e-mail in the first instance (david@ipopi.org will find him!)

I am looking forward to meeting you in Istanbul – do make sure you register and do try to find funding to enable you to attend. While IPOPI will be able to help a few countries, we will not be able to help everyone!

With good wishes

Jose Drabwell
Chairperson, IPOPI