ipopi advocacy & media training workshop eu expert recommendations & the work of plus johan...
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IPOPI Advocacy & Media Training Workshop
EU Expert Recommendations &
The work of PLUS
Johan Prevot Executive Director
14-15 September 2012Belgrade Art Hotel (BAH)
Belgrade, Serbia
• It all started with……
European Parliament STOA Panel, 17 March 2004
EU Advocacy Campaigns
2010
• Building on growing attention to PID and previous campaigns; EU Expert
Recommendations
EU Advocacy Campaigns
Joint Stakeholder advocacy
1. Political endorsement on a set
of key priorities for PID community
2. Policy tool and basis for further
campaigns including national
ones…
Recommendations on:
1. Awareness & Education
2. Screening & Diagnosis
3. Treatment & Management
• Building on growing attention to PID and previous campaigns; EU Expert
Recommendations
• Key messages & recommendations include:
EU Advocacy Campaigns
• Key messages & recommendations include:
EU Advocacy Campaigns
• Key messages & recommendations include:
EU Advocacy Campaigns
• Key messages & recommendations include:
EU Advocacy Campaigns
• Key messages & recommendations include:
EU Advocacy Campaigns
• PID Forums – SCID Newborn Screening & HTAs in 2011:
• National RD Plans PID Forum 2012: 26 September
Building political momentum around PID issues
Recommendations, Parliamentary Questions and EP resolutions
EU Advocacy Campaigns
• Follow up National campaigns – SCID newborn screening meeting, UK, 2011
EU Advocacy Campaigns
• IPOPI has been involved in a number of other initiatives at EU level
• To promote the need to take into account the specificities of PIDs in rare
diseases policies with regards to:
• Diagnosis rates/ Awareness
• Access to therapy - challenges linked to unique treatment
plasma protein therapy (immunoglobulins); cost/benefit
• Varying treatment levels in Europe
• Awareness and education
EU Advocacy Campaigns
IPOPI active on following key EU dossiers :
• Council Recommendations on Rare Diseases – July 2009 & National
Rare Diseases Plans – an opportunity for the PID community
• Pharma package: Patient Information, Counterfeit and
Pharmacovigilance
• Cross-border healthcare directive
• European Commission Blood Directive & Reports on Voluntary
Donations
• European Commission Committee of Experts on Rare Diseases to
advise and assist in formulating all legislation that affects the
treatment and care of rare diseases
• EMA Patients and Consumers Working Party (PCWP)
EU Advocacy Campaigns
• IPOPI works with other patient organisations representing rare plasma
related disorders under a coalition group called consisting of:
IPOPI & PLUS
• Activities undertaken by
• Meeting with Health Commissioner John Dalli
October 2011 & Vassiliou May 2008
• Policy Meetings 2010:
• Plasma Protein Therapies in the Treatment of Rare Diseases,
Chair: Miroslav Mikolasik
• Improving Care for Rare Plasma Related Disorders, Chairs:
Jorgo Chatzimarkakis / Miroslav Mikolasik
IPOPI & PLUS
PLUS Call to Action:
• Better diagnosis rates for plasma related disorders
• Equal treatment levels
• Recognition of unique nature of plasma protein therapies
in national policies
• Value of strong patient groups
• Patient registries
• Reference Centres
• Value of national
Rare Diseases plans
• Supply of human plasma
• MEP Interest Group
IPOPI & PLUS
• IPOPI actively participates in PLUS Stakeholders
Consensus Meetings, Dublin
• Dublin Consensus statements published in Vox
Sanguinis
• EU Parliament Fly-In meetings and meeting with
Commission services (2011), Blood Directive
Report
• Active participation in EU Commission survey of
the blood, blood components and plasma
derivatives market
IPOPI & PLUS
• Participation in Eurordis Rare Diseases activities
IPOPI & PLUS
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