Europe unites to break the silence
of "hidden" immune diseases
Thursday 5 October, Budapest: European doctors, nurses,
patients, parents and health policy makers today united to launch
a Call to Action, urging governments to combat the suffering caused
by Primary Immunodeficiency diseases (PIDs) – now recognised
as often the “hidden” answer for worried parents and
doctors trying to find the cause of recurrent infections in children
and adults. These lead to long term suffering, subsequent disability
and sometimes death in those who are not diagnosed correctly.
With
effective treatments available, the unnecessary suffering and subsequent
burden on healthcare provider resources has been recognised by
the European Commission as a public health issue. The Call to Action
is launched today at the ESID 2006 Conference (see Editors notes
below) and contains recommendations developed at the 2006 EU PID
Consensus Conference funded under the EU’s Public Health Programme.
PID’s are currently classified as a rare disease in Europe (EU
definition 1 in 2000), despite the fact that medical experts estimate
that the real prevalence of PID’s in the EU maybe as high as
1 in 250-500 of the population*. In the enlarged EU, this puts the
estimated number of potential PID sufferers at 1,940,000.
“Living
with an undiagnosed immune deficiency is a painful and isolating
experience. As a child your life is dominated with unexplained illness,
isolation and hospital visits which interrupt school. As the parent,
your life is filled with worry as you have a child who is recurrently
sick with no explanation. As an adult sufferer, being able to work
and have a “normal” life is almost impossible”, said
Bianca Pizzera, Chairman of the International Patient Organisation
for Primary Immunodeficiencies (IPOPI).
Today’s launch took place at ESID 2006 - the joint conference
of the PID physician, nurse and patient organisations. These organisations
have come together in a unique partnership to demonstrate the need
for the EU and national governments to take action to improve the
diagnosis and treatment of PIDs.
Prof László Maródi,
Chairman of the East-Central-European Infectious and Paediatric Immunology
Centre for Training and Research and host of the Budapest meeting
stated: “Early diagnosis of PIDs and access to appropriate treatment
is essential if long-term illness and disability is to be prevented.
This alleviates patient suffering and frees up hospital resources”.
The Consensus Statement contains practical recommendations for national
governments, including:
- Improved education, awareness and
information programmes for PIDs
- Implementation of standard
diagnosis tools and protocols, including screening
- Widespread
use of patient registries and treatment & care guidelines
- Guaranteed
access to safe and effective treatments at optimum levels
“The
European Commission fully supports the efforts of the PID community
to promote positive public health measures that prevent ill health
among those with PIDs. The recommendations of the EU PID Consensus
Conference, undertaken with the support of the EU’s Public Health
Programme, will make an active contribution to combating the under
diagnosis of these diseases”. John F. Ryan, Head of Health Information
Unit, DG Health and Consumer Protection, European Commission. |
