Publications & Information

2008
2007

News, Views & Press Releases
December 2007		Stem Cells in Neurology Conference On 24th October 2007 a conference ‘Stem Cells in Neurology’ was organised by Association Parkinson Luxembourg, at the Bâtiment Jean Monnet, a building of the European Commission in Luxembourg. The key speaker was Mike Modo, PHD Researcher at King’s College London, with Dr Alexandre Bisdorff of the Neurological Association Luxembourg presenting and moderating. Please click here for Report
6 November 2007		Alzheimer Europe Press Release: European institutions commit to making dementia a European priority in 2008 During a lunch debate organised by Alzheimer Europe on 6 November 2007 and hosted by Françoise Grossetête, MEP (France), representatives of different European institutions gave their clearest signal to date that the fight against Alzheimer’s disease and other forms of dementia would feature prominently in the plans of the European institutions in 2008. Please click here for Press Release
26 October 2007 MRI Press Release		Alliance for MRI welcomes postponement and amendment of the EU Directive on electromagnetic fields to protect MRI The Alliance for MRI welcomes the European Commission's announcement today that it will postpone and amend legislation which would pose a serious threat to the use of Magnetic Resonance Imaging (MRI) in patient welfare and scientific research. The EU Physical Agents Directive 2004/40/EC (EMF) is to be delayed by four years until 30th April 2012 to allow time for a substantive amendment to be adopted. If implemented, the Directive would prevent healthcare staff from assisting or caring for patients during imaging. It would mean that some patients who cannot be imaged without this care – if they are young, elderly, frail or confused – would either be denied imaging or have to undergo alternative procedures such as X-rays. Please click here for Press Release
17 October 2007 Published by The Financial Times, 17 October 2007		Brussels plans to relax health rules By Andrew Bounds in Brussels Patients will be able to seek treatment abroad based on clinical need rather than waiting time under plans drawn up by the European Commission. The draft health services directive could have big implications for healthcare providers that ration by waiting list, such as the UK’s National Health Service. A patient could travel for any treatment they were entitled to at home and be reimbursed up to the amount provided by their domestic system. For minor procedures not requiring a night in hospital, they would not normally need to gain permission. In more serious cases, they would need approval but their case should be assessed on medical grounds. “Any prior authorisation required for hospital care cannot be refused if treatment in another member state is appropriate to the patient’s condition and his state of health,” the draft directive says. The Commission will draw up a list of outpatient treatments to be defined as hospital care. This would be limited to those requiring “use of highly specialised and cost-intensive medical infrastructure” or posing a serious risk to the patient. Foreign patients would enjoy the same compensation rights as locals if something went wrong. Patients would first have to go through procedures specified by their local system, such as being referred by a general practitioner. The draft from health commissioner Markos Kyprianou could be amended by other Commission departments before it is released on November 20. It reinforces rights from earlier legislation, confirmed by the European Court of Justice, that patients can travel if they face “undue delay”. A series of such legal judgments led health ministers to ask the Commission to act. While the proposals may be too radical for some, they could invite further legal cases if watered down. With healthcare costs rising as the European population ages, the topic is sensitive. The directive also calls for prescriptions to be recognised mutually – drugs prescribed in one member state should be made available in another, if a patient’s doctor agrees.
8 October 2007		Brain tumour awareness week brings devastating disease out of the shadows An old proverb says: “It’s better to light a candle than to curse the darkness.” And no one knows better how all-enveloping that darkness can be, than those whose lives have been touched by a In an effort to light a firecracker, no less a candle in the darkness, the International Brain Tumour Alliance - IBTA (www.theibta.org) has launched the inaugural International Brain Tumour Awareness Week from 21 to 27 October 2007. Please click here for Press Release
October 2007 MRI – The EU Physical Agents Directive 2004/40/ec – an Update		Update on Campaign to protect MRI from the EU Physical Agents Directive 2004/40/ec The campaign to protect MRI from the EU Physical Agents Directive 2004/40/ec through the Alliance for MRI is still very much alive. While EU Institutions were going through their quieter moments during the summer break, a member of EFNA, the EU Multiple Sclerosis Platform, on behalf of the patient community, was engaged in talks with ETUI, the EU Trades Union, alongside other members of the alliance from the European Society of Radiologists (ESR) and the European Society of Therapeutic Radiology and Oncology (ESTRO), to discuss ways forward for the Directive. It was a very productive meeting. It is clear that the Directive was established to protect workers. However, the Directive unintentionally captured MRI and threatens to undermine years of progress for the patient, medical and scientific communities. This is particularly worrying as while the benefits to patients and others are clear, there is no evidence of harm for workers where MRI is concerned. Recently, the UK commissioned an independent study of the impact of the Directive on MRI. The Crozier Study fully supported assertions made by the MRI community about the significant impact of the Directive. Firstly, Professor Crozier’s study demonstrated that anyone standing within about 1 metre of an MRI scanner will exceed the exposure limits set out in the Directive. This will prevent healthcare staff from assisting or caring for patients during imaging, and will mean that some patients who cannot be imaged without this care, perhaps because they are young, elderly, frail or confused, will be denied imaging or have to undergo an alternative procedure using x-rays. Secondly, other parts of the Crozier Study shows that a member of staff walking as slow as 1 m/s within an MRI Scanner will also exceed the limits, even when the scanner is not in use. This will affect installation, servicing, cleaning and calibration of the equipment. This speed is extremely slow and cannot fail to have an impact on patient care also. This new scientific evidence, and the concerns highlighted by the Alliance for MRI of which EFNA is a founding member, points to the Commission needing to begin the process of amending the Directive before transposition deadline of April 2008 or postponing the implementation of the Directive while consulting widely with key stakeholders from the patient and wider MRI community and carrying out a full impact assessment on the implications of the Directive. EFNA will continue to press the Commission to act in a balanced way by taking into account the views of all stakeholders, including the expert community, to achieve a Directive that protects the needs of everyone.
27 June 2007 The European Parkinson Research Initiative and Dr. Thomas Ulmer, MEP, organise a lunch-debate at the European Parliament		Lunch-debate at the European Parliament On 27 June 2007, the European Parkinson Research Initiative and Dr. Thomas Ulmer, MEP, organised a lunch-debate in the European Parliament in Brussels. It was very well attended with over 20 participants from different European institutions, including Jerzy Buzek, MEP and raporteur of the 7th framework programme, Manuel Hallen, head of unit DG Research of the European Commission, and Mary Baker, European Brain Council (EBC) vice president. Read more ...
13 June 2007 MRI Directive – European Society of Radiology holds luncheon meeting to make the case for MRI to Commissioner Vladimir Špidla		European Society of Radiology holds luncheon meeting to make the case for MRI to Commissioner Vladimir Špidla On 13th June 2007 in the European Parliament, Mary Baker, President of EFNA, joined invited guests at the European Society of Radiology’s luncheon meeting to make the case for MRI to Commissioner Vladimir Špidla, the Employment and Social Affairs Commissioner. Mr Špidla is responsible for the Physical Agents (Electromagnetic Fields) Directive 2004/40/ec which will curtail the use of MRI. Also in attendance were many Members of the European Parliament, other experts and patient groups. In addressing the Commissioner and the meeting, Mary Baker made clear her concerns that the Commission would need to clarify what the implications are for patients in Slovakia and other countries, where the Directive is already implemented or is about to be implemented. EFNA is co-founder of the Alliance for MRI which is now seeking a derogation for MRI from the Directive. The EU Physical Agents (Electromagnetic Fields) Directive 2004/40/EC was intended to protect workers who may be exposed to electromagnetic fields during their work, for example from electricity generation and mobile phones, but the exposure limits set by the Directive will unintentionally impact on MRI. More on the impact of the Directive can be found at www.cancerworld.org. Frank Boeye, a member of the Belgium Brain Tumour Association and EFNA, is featured in the article and also attended the lunch. Commissioner Špidla was pleased to be engaging with the MRI Community and following the results from a UK sponsored study, the (Professor Stuart) Crozier Study into the impact of the Directive on MRI, he will now be analysing the findings. He is hopeful that a solution that is reasonable and ensures public health and worker safety can be found. The Commission could be open to proposing a legislative amendment but is not committed to doing so at this stage. Radiologists who have looked carefully at the Crozier Study believe it vindicates the concerns raised by the Alliance on the impact of the EU Physical Agents Directive (EMF) 2004/40/EC on the use of MRI. The demand by the Alliance for a derogation for MRI was supported by leading members of the Employment and Social affairs committee, Stephen Hughes MEP (co-ordinator for the PSE - socialists) and Elizabeth Lynn MEP ( Vice-President of the Committee - ALDE - Liberal). It would take a minimum of 18 months for such an amendment to be approved. More about the Alliance for MRI can be found at www.allianceformri.org .
02 May 2007 Information to Patients – Next steps at EU level A CHES Roundtable		Meeting on the recent EU level consultations on information to patients with the aim to progress the discussion on this topic The Centre for Health, Ethics and Society (CHES) held a meeting on the recent EU level consultations on information to patients on 2 May, with the aim to progress the discussion on this topic. The meeting aimed to provide a platform for exchange, and supported the formulation of proposals for follow up. In addition, a presentation and discussion of a practical model of ‘on demand’ medicines information was held. Two Commission speakers, James Copping and Rui Santos-Ivo (both from the Enterprise department) focused on the background and content of the consultations, and outlined the core assumptions the Commission subscribes to in relation to medicine information. These presentations were responded to by Jorgo Chatzimarkakis MEP, Wim Wientjens (International Diabetes Federation - IDF), Nicola Bedlington (European Patients Forum) and Rod Mitchell (International Association of Patient Organisations). The second part of the meeting focused on a demonstration model in relation to the provision of on demand information by means of interactive television– the European Patient Information Channel. This was presented by Scott Ratzan of Johnson & Johnson, one of the four companies involved with developing the project. The final part of the meeting consisted of a critical discussion of all presentations. For a full report of the meeting: www.madariaga.org/ches
30 March 2007 EFNA Statement on Counterfeit Medicines		EFNA expresses its deep concern about the rapidly spreading availability of counterfeit and sub-standard medicines being marketed in Europe today. Please click here for full statement
9 March 2007		Launch of new Alliance to protect use of Magnetic Resonance Imaging in EU MEPs, patient groups, leading European scientists and the medical community will join forces in Vienna tomorrow (Friday) to launch the Alliance for MRI. The Alliance’s founding members are: the European Society of Radiology, the European Federation of Neurological Associations, and Dr. Swoboda MEP, Vice-Chairman of the Socialist Group. The Alliance’s aim is to prevent European Union health and safety legislation from inadvertently preventing clinical and research use of Magnetic Resonance Imaging (MRI). Please click here for Press Release
March 2007 EFNA Statement on MRI		EFNA strongly supports the formation of the Alliance For Radiology and its pleas to the Commission to delay the implementation of the EMF Directive. The exposure limits for MRI machines set by the Directive appear to have been compiled from hypothetical and incomplete information and it is crucial that good scientific evidence is now used to place the perceived risks in proper context. Please click here for full statement

News, Views & Press Releases

December 2007

Stem Cells in Neurology Conference

stemcellconference On 24th October 2007 a conference ‘Stem Cells in Neurology’ was organised by Association Parkinson Luxembourg, at the Bâtiment Jean Monnet, a building of the European Commission in Luxembourg. The key speaker was Mike Modo, PHD Researcher at King’s College London, with Dr Alexandre Bisdorff of the Neurological Association Luxembourg presenting and moderating.

Please click here for Report

6 November 2007

Alzheimer Europe Press Release: European institutions commit to making dementia a European priority in 2008

During a lunch debate organised by Alzheimer Europe on 6 November 2007 and hosted by Françoise Grossetête, MEP (France), representatives of different European institutions gave their clearest signal to date that the fight against Alzheimer’s disease and other forms of dementia would feature prominently in the plans of the European institutions in 2008.

Please click here for Press Release

26 October 2007

MRI Press Release

Alliance for MRI welcomes postponement and amendment of the EU Directive on electromagnetic fields to protect MRI

The Alliance for MRI welcomes the European Commission's announcement today that it will postpone and amend legislation which would pose a serious threat to the use of Magnetic Resonance Imaging (MRI) in patient welfare and scientific research.

The EU Physical Agents Directive 2004/40/EC (EMF) is to be delayed by four years until 30th April 2012 to allow time for a substantive amendment to be adopted.

If implemented, the Directive would prevent healthcare staff from assisting or caring for patients during imaging. It would mean that some patients who cannot be imaged without this care – if they are young, elderly, frail or confused – would either be denied imaging or have to undergo alternative procedures such as X-rays.

Please click here for Press Release

17 October 2007

Published by The Financial Times, 17 October 2007

Brussels plans to relax health rules

By Andrew Bounds in Brussels

Patients will be able to seek treatment abroad based on clinical need rather than waiting time under plans drawn up by the European Commission.

The draft health services directive could have big implications for healthcare providers that ration by waiting list, such as the UK’s National Health Service.

A patient could travel for any treatment they were entitled to at home and be reimbursed up to the amount provided by their domestic system.

For minor procedures not requiring a night in hospital, they would not normally need to gain permission. In more serious cases, they would need approval but their case should be assessed on medical grounds.

“Any prior authorisation required for hospital care cannot be refused if treatment in another member state is appropriate to the patient’s condition and his state of health,” the draft directive says.

The Commission will draw up a list of outpatient treatments to be defined as hospital care. This would be limited to those requiring “use of highly specialised and cost-intensive medical infrastructure” or posing a serious risk to the patient.

Foreign patients would enjoy the same compensation rights as locals if something went wrong.

Patients would first have to go through procedures specified by their local system, such as being referred by a general practitioner.

The draft from health commissioner Markos Kyprianou could be amended by other Commission departments before it is released on November 20. It reinforces rights from earlier legislation, confirmed by the European Court of Justice, that patients can travel if they face “undue delay”.

A series of such legal judgments led health ministers to ask the Commission to act. While the proposals may be too radical for some, they could invite further legal cases if watered down. With healthcare costs rising as the European population ages, the topic is sensitive.

The directive also calls for prescriptions to be recognised mutually – drugs prescribed in one member state should be made available in another, if a patient’s doctor agrees.

8 October 2007

Brain tumour awareness week brings devastating disease out of the shadows

An old proverb says: “It’s better to light a candle than to curse the darkness.” And no one knows better how all-enveloping that darkness can be, than those whose lives have been touched by a In an effort to light a firecracker, no less a candle in the darkness, the International Brain Tumour Alliance - IBTA (www.theibta.org) has launched the inaugural International Brain Tumour Awareness Week from 21 to 27 October 2007.

Please click here for Press Release

October 2007

MRI – The EU Physical Agents Directive 2004/40/ec – an Update

Update on Campaign to protect MRI from the EU Physical Agents Directive 2004/40/ec

The campaign to protect MRI from the EU Physical Agents Directive 2004/40/ec through the Alliance for MRI is still very much alive.

While EU Institutions were going through their quieter moments during the summer break, a member of EFNA, the EU Multiple Sclerosis Platform, on behalf of the patient community, was engaged in talks with ETUI, the EU Trades Union, alongside other members of the alliance from the European Society of Radiologists (ESR) and the European Society of Therapeutic Radiology and Oncology (ESTRO), to discuss ways forward for the Directive. It was a very productive meeting.

It is clear that the Directive was established to protect workers. However, the Directive unintentionally captured MRI and threatens to undermine years of progress for the patient, medical and scientific communities. This is particularly worrying as while the benefits to patients and others are clear, there is no evidence of harm for workers where MRI is concerned.

Recently, the UK commissioned an independent study of the impact of the Directive on MRI. The Crozier Study fully supported assertions made by the MRI community about the significant impact of the Directive.

Firstly, Professor Crozier’s study demonstrated that anyone standing within about 1 metre of an MRI scanner will exceed the exposure limits set out in the Directive. This will prevent healthcare staff from assisting or caring for patients during imaging, and will mean that some patients who cannot be imaged without this care, perhaps because they are young, elderly, frail or confused, will be denied imaging or have to undergo an alternative procedure using x-rays.

Secondly, other parts of the Crozier Study shows that a member of staff walking as slow as 1 m/s within an MRI Scanner will also exceed the limits, even when the scanner is not in use. This will affect installation, servicing, cleaning and calibration of the equipment. This speed is extremely slow and cannot fail to have an impact on patient care also.

This new scientific evidence, and the concerns highlighted by the Alliance for MRI of which EFNA is a founding member, points to the Commission needing to begin the process of amending the Directive before transposition deadline of April 2008 or postponing the implementation of the Directive while consulting widely with key stakeholders from the patient and wider MRI community and carrying out a full impact assessment on the implications of the Directive.

EFNA will continue to press the Commission to act in a balanced way by taking into account the views of all stakeholders, including the expert community, to achieve a Directive that protects the needs of everyone.

27 June 2007

The European Parkinson Research Initiative and Dr. Thomas Ulmer, MEP, organise a lunch-debate at the European Parliament

Lunch-debate at the European Parliament

On 27 June 2007, the European Parkinson Research Initiative and Dr. Thomas Ulmer, MEP, organised a lunch-debate in the European Parliament in Brussels.

It was very well attended with over 20 participants from different European institutions, including Jerzy Buzek, MEP and raporteur of the 7th framework programme, Manuel Hallen, head of unit DG Research of the European Commission, and Mary Baker, European Brain Council (EBC) vice president.

European Society of Radiology holds luncheon meeting to make the case for MRI to Commissioner Vladimir Špidla

On 13th June 2007 in the European Parliament, Mary Baker, President of EFNA, joined invited guests at the European Society of Radiology’s luncheon meeting to make the case for MRI to Commissioner Vladimir Špidla, the Employment and Social Affairs Commissioner. Mr Špidla is responsible for the Physical Agents (Electromagnetic Fields) Directive 2004/40/ec which will curtail the use of MRI. Also in attendance were many Members of the European Parliament, other experts and patient groups.

In addressing the Commissioner and the meeting, Mary Baker made clear her concerns that the Commission would need to clarify what the implications are for patients in Slovakia and other countries, where the Directive is already implemented or is about to be implemented.

EFNA is co-founder of the Alliance for MRI which is now seeking a derogation for MRI from the Directive. The EU Physical Agents (Electromagnetic Fields) Directive 2004/40/EC was intended to protect workers who may be exposed to electromagnetic fields during their work, for example from electricity generation and mobile phones, but the exposure limits set by the Directive will unintentionally impact on MRI. More on the impact of the Directive can be found at www.cancerworld.org. Frank Boeye, a member of the Belgium Brain Tumour Association and EFNA, is featured in the article and also attended the lunch.

Commissioner Špidla was pleased to be engaging with the MRI Community and following the results from a UK sponsored study, the (Professor Stuart) Crozier Study into the impact of the Directive on MRI, he will now be analysing the findings. He is hopeful that a solution that is reasonable and ensures public health and worker safety can be found. The Commission could be open to proposing a legislative amendment but is not committed to doing so at this stage.

Radiologists who have looked carefully at the Crozier Study believe it vindicates the concerns raised by the Alliance on the impact of the EU Physical Agents Directive (EMF) 2004/40/EC on the use of MRI.

The demand by the Alliance for a derogation for MRI was supported by leading members of the Employment and Social affairs committee, Stephen Hughes MEP (co-ordinator for the PSE - socialists) and Elizabeth Lynn MEP ( Vice-President of the Committee - ALDE - Liberal). It would take a minimum of 18 months for such an amendment to be approved.

More about the Alliance for MRI can be found at www.allianceformri.org .

02 May 2007

Information to Patients – Next steps at EU level

A CHES Roundtable

Meeting on the recent EU level consultations on information to patients with the aim to progress the discussion on this topic

The Centre for Health, Ethics and Society (CHES) held a meeting on the recent EU level consultations on information to patients on 2 May, with the aim to progress the discussion on this topic.

The meeting aimed to provide a platform for exchange, and supported the formulation of proposals for follow up. In addition, a presentation and discussion of a practical model of ‘on demand’ medicines information was held.

Two Commission speakers, James Copping and Rui Santos-Ivo (both from the Enterprise department) focused on the background and content of the consultations, and outlined the core assumptions the Commission subscribes to in relation to medicine information.

These presentations were responded to by Jorgo Chatzimarkakis MEP, Wim Wientjens (International Diabetes Federation - IDF), Nicola Bedlington (European Patients Forum) and Rod Mitchell (International Association of Patient Organisations).

The second part of the meeting focused on a demonstration model in relation to the provision of on demand information by means of interactive television– the European Patient Information Channel. This was presented by Scott Ratzan of Johnson & Johnson, one of the four companies involved with developing the project.

The final part of the meeting consisted of a critical discussion of all presentations.

For a full report of the meeting: www.madariaga.org/ches

30 March 2007

EFNA Statement on Counterfeit Medicines

EFNA expresses its deep concern about the rapidly spreading availability of counterfeit and sub-standard medicines being marketed in Europe today.

Please click here for full statement

9 March 2007

Launch of new Alliance to protect use of Magnetic Resonance Imaging in EU

MEPs, patient groups, leading European scientists and the medical community will join forces in Vienna tomorrow (Friday) to launch the Alliance for MRI. The Alliance’s founding members are: the European Society of Radiology, the European Federation of Neurological Associations, and Dr. Swoboda MEP, Vice-Chairman of the Socialist Group.

The Alliance’s aim is to prevent European Union health and safety legislation from inadvertently preventing clinical and research use of Magnetic Resonance Imaging (MRI).

Please click here for Press Release

March 2007

EFNA Statement on MRI

EFNA strongly supports the formation of the Alliance For Radiology and its pleas to the Commission to delay the implementation of the EMF Directive.

The exposure limits for MRI machines set by the Directive appear to have been compiled from hypothetical and incomplete information and it is crucial that good scientific evidence is now used to place the perceived risks in proper context.

Please click here for full statement


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