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Partnership for Progress
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August 2008 Invitation to MHADIE High Level Conference- European Parliament-Brussels 16 September 2008 and DPOs roundtable 15 September 2008 |
Measuring Health and Disability in EuropeThe MHADIE Final Policy recommendations are the results of three years of research in 13 European Countries and derive from the application of ICF and its model in statistical, clinical and educational settings. The Policy Recommendations and the results of the EU project MHADIE will be presented to the European Parliament on 16th September 2008 – registration to this meeting is compulsory for EU security reasons. As part of the MHADIE High Level Conference on Monday 15 September there will be a Roundtable discussion - Disabled People Organizations’ policies on Health and Disability in European countries, taking place at the Fondation Universitaire, Rue D’Egmont 11, where more than 40 DPOs from all European Countries and EU Commission’s representatives will join together to discuss. Registration to the Roundtable discussion should be made in advance. The MHADIE policy recommendations represent an innovative ICF based approach for support and development of European health and disability policies and Dr Matilde Leonardi, Project Co-ordinator, invites MURINET members and colleagues to freely use them and send to your networks. Deadline for registration 30 August. |
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24 July 2008 Alliance for MRI Position Paper |
Alliance for MRI Position PaperThe Alliance for MRI is concerned that the threat posed by the EU Physical Agents 2004/40/EC (EMF) to the future of MRI has not been averted and that there is a need for action by the European institutions. Despite the adoption of a proposal to postpone the implementation of the Directive until April 2012 (to allow time for a substantive amendment), there are two key threats. |
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23 July 2008 Medpedia Press Release |
Medpedia Announced, World's Largest Collaborative OnLine Encyclopedia of Medicine and HealthSAN FRANCISCO, CA (July 23, 2008) –The Medpedia Project today announced the formation of the world’s largest collaborative online encyclopedia of medicine called Medpedia. Physicians, medical schools, hospitals, health organizations and public health professionals are now volunteering to collaboratively build the most comprehensive medical clearinghouse in the world for information about health, medicine and the body. This free public site will officially launch at the end of 2008, and a preview site becomes available today at www.medpedia.com. |
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2 July 2008 |
Cross-Border HealthcareAs part of the Renewed Social Agenda, the Commission adopted on 2 July 2008 a proposal for a directive to facilitate the application of European patients' rights in relation to cross-border healthcare, as well as a Communication on improving co-operation between Member States in this area. Despite several clear European Court of Justice rulings confirming that the EU Treaty gives individual patients the right to seek healthcare in other Member States and be reimbursed at home, uncertainty remains over how to apply the principles of this jurisprudence more generally. With this proposal the Commission aims to provide legal certainty on this issue. This follows calls from both the European Parliament and the Council of Ministers for the Commission to propose a specific initiative on cross-border healthcare, in a way explicitly adapted to, and respecting, the unique nature of the healthcare sector. In addition, the proposed Directive provides a solid basis to unlock the huge potential for European cooperation to help improve the efficiency and effectiveness of all EU health systems. |
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June 2008 EAASM Newsletter |
The Counterfeiting SuperhighwayIt is fundamentally impossible to declare the true magnitude of medicine counterfeiting on a global scale due to its clandestine nature. Counterfeit medicines are shipped covertly across a range of international jurisdictions and frequently traded via unofficial and uncontrolled websites. We know, however, that the industry is growing rapidly. The latest intelligence available on the incursion of counterfeit medicines reveals that there were over 50% more seizures of counterfeit medicines in 2007 than in the previous year. Officials have reported a shift in the type of products being counterfeited; away from cigarettes, DVDs and CDs and towards medicines, toys and cosmetics. The Center for Medicine in the Public Interest (CFPI), based in the US, predicts that counterfeit medicine sales will reach approximately €55.5bn globally by 2010 – an increase of more than 90% in just 5 years. |
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13 May 2008 Invitation from Cases Journal |
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9 May 2008 Alliance for MRI Invitation to Strategy meeting in Brussels on 30 June 2008 |
Invitation to Alliance For MRI MeetingBrussels, June 30, 2008Please click here for the Invitation The Alliance will be holding a strategy meeting in Brussels on June 30, 2008 in order to define the direction of our activities going forward and to realign ourselves. We are now at the beginning of a new stage in the campaign. It will be essential the voice of the Alliance is heard by the European Commission in respect of the amendment of Directive 2004/40/EC on electromagnetic fields. We need to ensure that all forms of MRI are not threatened by this legislation. If you would like to contribute to this process and attend the meeting, please inform Monika Hierath of your interest by 30th May and you will be informed of all the meeting details. Contact: |
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30 April 2008 Alliance for MRI Update |
Alliance for MRI Update from Secretariat
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30 April 2008 IMI Launch |
The Innovative Medicines InitiativeBy joining resources Europe and the pharmaceutical industry gain the leadOn 30 April 2008 the first Call for Proposals under the Innovative Medicines Initiative (IMI) was presented at an official event in Brussels bringing together high level stakeholders from all areas of drug discovery and development.
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April 2008 Report by Sari Porat (Israel), on the EBC conference, held on 27-28 February 2008. |
Impressions of the European Brain Research conversion in BrusselsCold Brussels greeted us warmly. We felt at home on entering, since the Israeli "Kenes" company organized the event, and all the attendants spoke Hebrew… The Israeli flag found its natural space among 30 European flags. Like in basketball and the Eurovision song contest – we are on the map! Thanks to our friend Rafi Meidan efforts, we are members of EPDA, the European Parkinson's Disease Association. EPDA has embraced us, conducting strong ties with our representatives, mutual visits, inviting us to conferences, and above all – provides us with updates on recent news and worldwide developments on treatment and research. |
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April 2008 Report from 4 December 2007 EPPOSI Workshop |
EPPOSI Workshop on Patient Safety4 December 2007, Jean Monnet Building, Luxembourg Organised with the support of the European Commission’s DG Health & Consumer Protection, the meeting focused on communicating risks and the value of safety to patients with Chronic Diseases. The workshop brought together clinicians, patients, industry and EU commission officials to discuss and to agree broad consensus recommendations on best practice regarding communication of the relevant risks and benefits of therapy in chronic conditions- see the Report of the workshop http://www.epposi.org/07%2012%2004%20Report%20Luxemburg.pdf |
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10 March 2008 Frank Boeye, Chairman |
National Cancer PlanOn 26.04.2007 Mrs. Greet van Gool, Member of Parliament, has lodged a parliamentary resolution in our Chamber of Representatives in matters of brain tumour treatment. After the elections on 10.06.2007 this initiative has been taken up again by the Members of Parliament Maya Detiège, David Geerts, Yvan Mayeur, Yolande Avontroodt, Marleen Temmerman, Nahima Lansjri and Patrick Vankrunkelsven. During the period 2005-2008 several parliamentary initiatives of different stakeholders have been introduced.
The Minister organised 3 days of debate with all stakeholders. It was the first time that the patients took part in consultations on this level. The old budget remains intact, and for the new initiatives the Minister has got a budget of 380 million EURO. This money will be invested in prevention, care and scientific research. 32 specific measures have been retained. Werkgroep Hersentumoren vzw (Study Group Brain Tumours Belgium) is glad to see that all points we insisted on have been retained in the “National Cancerplan”, and that they will be of profit to all cancer patients and their surroundings. The “National Cancerplan” certainly will contribute to an improvement of the quality of cancer treatment, and will lead to a humanisation of medicine. In matters of brain tumours the Minister will consider the establishment of “centres of excellence”, a specific psychological support, better access to innovative drugs, a better follow-up during rehabilitation and a continued social attention |
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6 March 2008 EC Project MHADIE |
EC Project “MHADIE - Measuring Health and Disability in Europe: supporting policy development”Please click here for full Presentation of the MHADIE Project which was used by EC Officer Mrs Véronique Bernard, to introduce MHADIE, along with other FP6 disability projects, to the High Level Group on Disability; which is under the responsibility of DG Employment and social Affairs. The meeting took place on 6 and 7 March and the agenda included a 20 minute “information point” on RTD disability projects. The Commission was so impressed with the event that they are providing funding for an additional meeting in the European Parliament. |
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February 2008 European Alliance for Access to Safe Medicines Newsletter |
EAASM Director
Mary is Patron and Immediate Past President of the European Parkinson’s Disease Association (EPDA), a position she was elected to in 1992 when the EPDA was first formed. With a membership of 38 European Parkinson’s Disease Patient Organisations, the EPDA is a non-profit making organisation dedicated to the promotion of the international understanding of Parkinson’s Disease. Mary retired as Chief Executive of the Parkinson’s Disease Society of the United Kingdom in 2001 where she had worked for 18 years, advocating the needs of people living with Parkinson’s and their families, and developing methods of good practice. Mary is also President of the European Federation of Neurological Associations, Vice President of the European Brain Council, Consultant to the WHO and Chair of the Working Group on Parkinson’s Disease formed by the WHO in May 1997. In 2005 the Council of Europe appointed Mary as one of the patient representatives to serve on the Management Board of the European Agency for the Evaluation of Medicinal Products. In 2007 Mary was delighted to be appointed Honorary Member of the Parkinson’s Disease and Movement Disorder Society for India. She is Director at Large for the World Stroke Association, former Patient Editor of the BMJ (now Chair of the BMJ Patient Advisory Group), member of The Association of the British Pharmaceutical Industry Code of Practice and has received an Honorary Doctorate from the University of Surrey in recognition of her work within the world of Parkinson’s Disease. Mary has also received numerous awards in recognition of her work in the field of neurology, including the European Woman of Achievement Award 2000 and the Human Communication International Award 2001. |
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21 February 2008 Alliance for MRI Press Release |
Alliance for MRI welcomes European Parliament approval of postponement of EU Directive on electromagnetic fields to protect MRIThe Alliance for MRI welcomes the European Parliament's approval on February 19 of the request by the European Commission to postpone this Directive for a period of 4 years in order to have sufficient time to review the EU Physical Agents Directive 2004/40/EC (EMF). This important vote represents another major, laudable step forward in the right direction. The European Parliament approved the postponement with a clear majority. Following the positive vote in the Parliament, the next major step in the legislative procedure will be the vote at the Council of Ministers, which is expected at the end of February. The Directive will be delayed by four years until 30th April 2012 to allow time for a substantive amendment to be adopted. Prior to a proposal being adopted, the European Commission will be undertaking a comprehensive impact assessment of the Directive and a broad stakeholder consultation. The Alliance for MRI and its members look forward to contributing to this process. The Alliance for MRI remains concerned, however, that a number of member states have proceeded with transposition of the Directive, and calls on the European Commission to address this situation. The current published Directive prevents healthcare staff from assisting or caring for patients during MR imaging. As a result, 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. |
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20 February 2008 Article by Hannah Cleaver |
Internet pharma ordering 'so difficult to police it should close' – ex BfArM presidentFRANKFURT, Feb 20 (APM) – Mail-order pharmaceutical ordering via internet sites is the biggest threat to medicine security and serious thought should be given to banning it, according to the former president of the German Federal Institute for Drugs and Medical Devices (Bundesinstitut für Arzneimittel und Medizinprodukte, BfArM). Harald Schweim, who spent four years heading BfArM and is now professor of drug regulatory affairs at Bonn University, was addressing a seminar on counterfeit medication in Frankfurt. He argued that although the legal operators are largely under control, and that Germany has a low rate of counterfeited drugs, the illegal operators are impossible to control. The enormous profits to be made through counterfeited drugs were already well-known, he said, but the development of Europe as an important staging-post for the international trade was new, with examples such as counterfeited Viagra being confiscated in France en route to Brazil. The other new development was that some drugs were being counterfeited and marketed before the real versions were licensed, as demonstrated by the emergence in March 2006 of counterfeited rimonabant while the European Medicines Agency was still examining Sanofi's licence application. BRITISH SUPPLY CHAIN CONTAMINATED He pointed to the situation in the UK, where authorities are examining 100 internet firms suspected of selling counterfeited medicines. The British supply chain was so contaminated that when in July 2006 a recall of Lipitor was ordered after fake versions were discovered, more than 50% of the packages sent back were found to be counterfeit. "The British are now saying that if the internet is at the root of all this, we might have to close it down for prescription-based medication sales," he said. The Germasystem of pharmacies was currently effective at protecting the country's patients, but Schweim warned that the advent of prescription ordering over the internet could break down this protection. LEGAL SITES CAN BE MONITORED Schweim stressed that he had no problem with the legal internet-based mail-order pharma supply companies, but said there were countless illegal ones which were impossible to check, and were supplying counterfeit, illegal and possibly dangerous drugs. "The big companies such as DocMorris are easy to check," he said. "But the small ones are practically impossible to control. It was a definite mistake to open up the mail-order pharmacy business because it is not possible to control. We have thrown a lot of security away by doing this." PUBLIC TOO NAÏVE ON COUNTERFEIT DRUGS The public is still not sufficiently aware of the dangers of counterfeit medications, nor how to recognise them, and are alarmingly naïve about websites selling medication, he said. He and university colleagues set up a fake website deliberately imitating bona fide mail-order medication sites, although it broke rules by offering online medical consultation, and was also advertising cut-price Viagra. Pharmacy students who he asked to evaluate the site, saying it was a business proposal, failed to spot the legally-questionable aspects, rating the site highly. This illustrated the problem perfectly, said Schweim. PHARMA SECURITY 'THROWN OVERBOARD' "We have thrown the system of pharma security overboard for political means," he said. "We don't even know if this billion euros, which were supposed to be saved in medication costs, was actually saved." He also said the authorities which are supposed to be monitoring or controlling the trade seemed incapable or worse, unwilling, to follow up a number of complaints he made about a number of websites which he felt were clearly breaking the law. "Close the internet business down," he said. "It was a good idea but it didn't work," he concluded. |
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31 January 2008 Alzheimer Europe |
Alzheimer Europe’s care survey results published in peer-reviewed scientific journalThe Dementia Carer’s Survey provides insight into carers’ needs, differences that exist between countries with regard to dementia care and the level of satisfaction of carers with utilised services. The information is a product of over one thousand completed questionnaires by carers. It was carried out by the Alzheimer associations in France, Germany, Poland, Spain and Scotland and was developed by Alzheimer Europe in collaboration with H Lundbeck AS. A summary of the survey has been published in the International Journal of Geriatric Psychiatry and highlights the following issues for carers:
The article concludes by calling for “further development of services and information provision to help carers in their everyday caring”. The author of the article, Jean Georges who is the Executive Director of Alzheimer Europe, commented “Dementia is a major public health problem and the impact on carers’ lives is enormous. Nevertheless, carers want to continue caring for their loved ones, but need better information and support. The participating Alzheimer associations hope this publication will help in our campaign to improve dementia services”. To see the full study “Alzheimer’s disease in real life- the dementia carer’s survey” see: http://www.alzheimer-europe.org/upload/SPTUNFUYGGOM/downloads/BAF644C16E7D.pdf To see the abstract and relevant link to the article published in the International Journal of Geriatric Psychiatry please see: http://www3.interscience.wiley.com/cgi-bin/abstract/117902501/ABSTRACT |
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20 January 2008 From issue 2587 of New Scientist magazine, page 16 |
How brain protein turns toxic in Alzheimer's diseaseThe long-suspected link between Alzheimer's disease and abnormalities in the way amyloid protein is processed in the brain has been confirmed at last. Usually harmless, the amyloid protein is thought to trigger neurological damage when it is broken down and transformed into toxic fragments of beta-amyloid. Previous studies have shown that people with Alzheimer's have reduced levels of several proteins involved in processing amyloid. To find out whether low levels of any of these proteins could cause the production of toxic beta-amyloid, Peter St George-Hyslop at the University of Toronto in Canada and colleagues studied the DNA of 6861 people, 46 per cent of whom had Alzheimer's (Nature Genetics, DOI: 10.1038/ng1943). Those with the disease proved significantly more likely to have variants of the gene SORL1, which usually produces a protein that binds amyloid and transports it to an area of the cell where it can be harmlessly recycled. To demonstrate that mutations in SORL1 could trigger the disease, the researchers treated cells in the lab to deactivate the gene. This led to a substantial increase in the production of toxic beta-amyloid. "Where SORL1 is absent or defective, it allows the amyloid to float off into other areas where it is degraded," says St George-Hyslop. The team have identified two regions of SORL1 they believe harbour the disease-causing mutations, but have not yet found the mutations themselves. |
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16 January 2008 From issue 2638 of New Scientist magazine, page 12
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Lead exposure may be a factor in Alzheimer'sThe toxic effects of lead could be more far-reaching than we thought. Monkeys exposed to the heavy metal during infancy may be predisposed to develop the equivalent of Alzheimer's disease. "We're not saying that lead exposure causes Alzheimer's disease, but it's a risk factor," says Nasser Zawia of the University of Rhode Island in Kingston, whose team discovered the link. What's more, comparative analysis of RNA in their brains showed three key genes linked with Alzheimer's disease were 50 to 100 per cent more active in lead-fed monkeys than in those given uncontaminated milk as infants (The Journal of Neuroscience, DOI: 10.1523/JNEUROSCI.4405-07.2008). The genes help generate the beta-amyloid protein found in brain plaques. Blood samples taken from the baby monkeys at 400 days and at regular intervals thereafter showed lead concentrations slightly above those considered safe in children by the US Centers for Disease Control and Prevention. Yet by the time the monkeys were three years old the lead had been excreted, leading Zawia to conclude the damage was done during the critical early period of life, rather than during adulthood. Earlier experiments in rats and mice that did develop Alzheimer's-like symptoms after being exposed to lead as infants also suggested adult exposure did not put them at any increased risk of Alzheimer's. Other researchers caution against overreacting to the findings. "This study does not prove that exposure to lead in early life causes Alzheimer's disease," says Susanne Sorensen, head of research at the UK's Alzheimer's Society. "Lead is well known to have a number of negative effects on cells, so it's not surprising some of these occur in the brain." She says more research is needed to investigate whether early life events can lead to brain changes that increase the risk. Zawia agrees there's no cause for alarm, particularly as much lead has already been removed from paint, petrol and other environmental sources. However, he says the findings reinforce the need to limit lead exposure, and highlight an unexpected hazard. "We want to raise awareness that some environmental exposures could have delayed or masked consequences that become apparent later in life," he says. Jackie Hunter, head of GlaxoSmithKline's centre for neurology drug discovery in Harlow, UK, said the findings reveal how environmental and genetic factors might combine to alter susceptibility to the disease. |
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January 2008 |
Rewrite Tomorrow
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January 2008 |
EPDA launches a coping compendium to help people with Parkinson’s and carers
Many times people with Parkinson and their families find solutions on their own that help them to cope better with motor and non-motor problems in their daily life. By sharing people’s positive experiences worldwide, people with Parkinson’s and their families will be able to learn from each other. |
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The IMI Joint Undertaking is a fundamentally new and the first of its kind public-private partnership between the European Commission and the European Federation of Pharmaceutical Industries and Associations (EFPIA). By removing major bottlenecks in the drug development process through innovative research projects, IMI will accelerate the discovery and development of innovative medicines. Furthermore it will boost Europe’s competitiveness in biopharmaceutical innovation and foster Europe as the most attractive place for pharmaceutical R&D. 
Mrs. Laurette Onkelinx, Minister of Public Health, has decided to treat all these initiatives in one big package of measures: “The National Cancerplan” for the period 2008-2010. After that the program will be evaluated and a new plan will be initiated.
The Alliance is delighted to announce that Mary Baker, MBE, will become a Director of the Alliance, effective immediately. Mary has been an invaluable supporter since the Alliance’s inception and it will be very constructive to have such a well-respected patient activist as a Director.
The EPDA's website Rewrite Tomorrow 
The EPDA is developing a catalogue of Coping Strategies organized in various categories and according to the most common difficulties encountered.