PID Care in Development Working Party
PID Care in Development WP Newsletter December 2017
by Peter Jandus
The PID Care in Development Working Party (PIDCD WP)
Unfortunately, the resonance for a steering committee of national representatives who are involved in PID care was disappointing. I am still convinced that this idea will find one day a renaissance. The time was not ripe for this idea. Nevertheless, we will continue to collaborate with IPOPI and INGID. This has been stressed out at our workshop in Edinburgh at the ESID Focus meeting 2017.
Entirely in line with our better collaboration, my working party has already attended the IPOPI’s 10th Forum at the European Parliament in Brussels 22th November: Tackling the Diagnostic Odyssey in Rare Diseases. Several items has been discussed how to Improve PID diagnosis, and how to raise awareness. The diagnostic delay improved considerably in the past twenty years, thanks to increased awareness and technological achievements. But we know only those patients who had been diagnosed. If we believe statistics, there should be at least 600’000 patients with PID in Europe. Thus only a minority of the patients has been diagnosed. So many patients are still undiagnosed with PID. How can we overcome this situation? One possibility would be new born screening. If we compare the situation in Europe with the USA, so we can see that newborn screening in the EU is still behind the expectations. Another possibility would be a the incorporation of a basal screening test (e.g. complete blood count, lymphocyte subpopulation and serum immunoglobulins) for the general practitioner if he has patients with suspicion for PID. These tests are mostly available in all health care settings but not always reimbursed. Several questions have arisen with regard to European reference networks (ERN). How can we standardize molecular testing and how to use ERN for PID diagnostics? A possibility could be to use ERN for less common PIDs which are more difficult to detect. This may help to overcome the underreporting and the biased estimates of the PID diagnostic. A very important question is how to proceed with Great Britain after Brexit. No one had an answer and it seems to remain unanswered for a long time to come.
Differences across Europe persist. In order to know the needs and difficulties of each country we need to know more. For this reason my working party is collecting information about access to diagnostic facilities, treatment, health care and reimbursement. You are invited to report all of the inequalities you encounter in your country! Only as one voice and all together physicians with patients, nurses and scientists can make a difference.
One goal of my working-party is that all ESID-member have access worldwide to the same information and training in the field of PID, irrespective of the nationality. We will continue to work on the ESID Education Online platform. There is a survey ongoing. Your input is important! With your contribution we can make it better.
My goal is to make ESID closer for their members and let their contributions, ideas and suggestions influence our society. Only an open constructive discussion can help to develop one society. ESID members are all invited for contributions and ideas.
I wish a merry Christmas and a happy new year 2018!
Peter Jandus, MD