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