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  1. 1. HEART EU - The European Cholesterol Foundation<br />Annual Review 2009<br />HEART EU’s Vision is to initiate well proven ways to commission new Country Patient Organisations and thus to extend partner programmes that prevent premature deaths caused by inherited high cholesterol and cardiovascular disease.<br />HEART EU’s Strategic Aim is to achieve this is by advising and supporting essential quality healthcare partnerships between high level representatives of clinicians, patients, governments, the corporate sector and other foundations, in individual countries, in Europe and beyond.<br />BACKGROUND<br />CVD is the main cause of death in women in all European countries and is the main cause of death in men in all countries with the exception of France, The Netherlands and Spain. CVD causes 4.3 million deaths each year in Europe; that is nearly half of ALL deaths. Half the total annual CVD costs in the EU - nearly €200 – is for health care. However there are great differences in mortality rates across Europe. One such variance concerns Inherited High Cholesterol (IHC) and Familial hypercholesterolaemia (FH) is the most prominently diagnosed form of IHC, affecting around 1 in 500 people. However in certain populations, south East Asian, Middle East, South Africa and Quebec for example it is considerably more. In another form of inherited high cholesterol (IHC), that of familial combined hypercholesterolaemia, the incident rate is double, so taking the main European Countries, there are in excess of 5 million people with one form or another of IHC. Two further important facts make this a vital area for early diagnosis and prevention. They are firstly the clear indication that the Health Care Services of most countries neither recognise the disastrous implications of doing nothing nor the cost results of so doing in terms of lives lost and the social and economic burdens to their budgets in the medium to longer terms. Secondly IHC is asymptomatic – there being no outward signs of encroaching illness, nor indeed the high probability that a first event (heart attack or stroke) will be fatal. Only have the Governments of The Netherlands, Northern Ireland, Norway, Spain and Wales really embraced the concept of family screening with varying degrees of success. Although it is perfectly possible that General Practice Physicians are carrying out some form of screening, they are unlikely to extend the vital search beyond their surgeries. Some may recognise the family connection of inherited heart disease and may be prescribing for an intended better outcome. It is however clear that many are not or at best prescribing without either follow-up or follow-through. <br />A Message from the Chairman <br />I am pleased, on behalf of the International Board, to present HEART EU’s Annual Review which reflects a year of considerably increased activity generated by a dedicated and hugely enthusiastic team of skilled players drawn from clinicians, advocates, facilitators and patients. The projects, time involvement, reports and attendance at important events and conferences would not have been possible without the generous support of our corporate sponsors.<br />Partnership and media activities during 2009 have resulted in positive international exposure of the Foundation, all of which have generated a notable increase in the way our commitments to the betterment of international patient organisations have been positively received by new country interest in our work and recognition by our partners in Governments, the Health Care and Corporate Sector.<br />HEART EU is committed to increasing awareness of the Foundation’s broad role in the prevention of cardiovascular disease and specifically in supporting new country patient organisations for the diagnosis and treatment and support of those with IHC. Our challenges over the year ahead will be to complete our international merger with MEDPED for launches at various events in 2010 and 2011, secure the long-term financial future of the Foundation so that the ground work completed to date can develop and grow. We remain committed to working in partnership with all our colleagues, the wider public, industry and government to ensure our continuing success.<br />Michael Livingston<br />Proxy Chairman<br />A Message from the International Board<br />The provisions of high quality Country Support Commissioning, education and understanding, each hallmarks of great value, are at the forefront of HEART EU’s mission. Continued professional development is essential in developing better care for patients. Just as primary care is taking on new rafts of responsibilities, it is even more important that we ensure extra skills and attributes are provided by the Foundation through our partners in European and Global Government, the Corporate and Third Sectors and primary and health care professionals. Whilst it is hugely important to maintain these service strategies, we are acutely aware that we need to attend to our long term income; that takes into account the global economic downturn. Whilst patients, their families and the public, with high quality health professional interaction, need to take more control and responsibility for their futures through new country Support Centres, endeavours initiated by HEART EU will need to be ever more imaginative and assertive in order to achieve the best outcomes.<br />The Directors<br />HEART EU Priorities<br />Working globally in partnerships with clinicians, governments, international health services, industry, not for profit organisations and patients to commission new country support centres.<br />Promoting best clinical practice in addressing IHC conditions including familial, familial combined and rare dyslipidaemias (FH and FCH).<br />Supporting International Support Centres with onboard skills and attributes available at the organisation’s headquarters in Europe.<br />Campaigning on behalf of Country Support Centres to increase understanding that raised cholesterol continues to be a major risk factor for cardiovascular disease (CVD).<br />To support and improve the global reach and communication between clinicians with interests in field of metabolic dyslipidaemia – inherited high cholesterol and associated illness.<br />SURVEY OF MEPS<br />What HEART EU set out to do.<br />To survey more than 40 Members of the European Parliament (MEPs), Health Commissioners, Attachés and over 20 leading physicians in Europe to seek first hand the perspectives of those European policymakers, medical advisors to policy and physicians with the potential to influence the future of CVD management.<br />What we achieved<br />HEART EU was able to suppose that the risk of cardiovascular disease (CVD) posed by elevated low density lipoprotein cholesterol (LDL-C) was still not being prioritised in line with wider morbidities such as cancer or diabetes, despite it contributing to more than 4.3 million deaths every year in Europe1.  <br />The findings of this survey of more than 40 Members of the European parliament (MEPs), Health Commissioners, attachés and over 20 leading physicians in Europe were stark. The research, supported by Merck Schering-Plough pharmaceuticals, also found that policy makers not only underestimated actual numbers of people affected by high cholesterol but that just 61% believed that LDL-C and co-morbidities had a ‘significant impact’ on overall public health. Policy formers and physicians generally held differing opinions about whether ownership of the issue was a medical or policy consideration. <br />“ CVD risk identification could reduce the occurrence of CVD cases and give patients better care when there is an improved system of risk identification in place ”<br />Despite the discrepancies in healthcare policies across Europe which resulted in the differing standards of cholesterol management highlighted in the report, respondents did agree that the cholesterol ‘issue’ should be given higher priority and that additional funding should be made available to support cholesterol screening and cardiac care. In particular, the need for consensus among politicians to understand the global risk of CVD and the burden on lives and the economy was seen by those surveyed as important if identify barriers to treatment were to be identified and overcome. 38% of policy formers felt that national Health Ministers had a duty to prioritise cholesterol management on the CVD risk agenda in Europe.<br />Wider findings of the report and supporting discussion by expert editors including former MEP and Health Minister, John Bowis, ESC Secretary and leading cardiologist, Professor Jose Zamorano highlighted were:<br />low awareness of LDL-C and the role it has in the pathology of CVD leading to lack of prioritisation on the healthcare policy agenda<br />differences of opinion about whether prioritisation of the cholesterol issue is a healthcare or medical issue, leading to a lack overall responsibility and action<br />little to no awareness of successful initiatives in cholesterol management leading to inadequate sharing of best practice and a lack of unified approach across Europe<br />confusion over guidelines and treatment goals which may lead to physicians not intervening early or aggressively enough in some cases<br />the risks posed for patients with multiple risk factors such as type 2 diabetes not being given high enough priority leading to delays in treatment <br />problems of insufficient follow up resulting in patients being poorly managed or receiving inadequate long term treatment <br />In conclusion, our report authors emphasised that addressing the barriers and complexities of getting patients to screening and treatment goals, depends on steps need to be taken to ensure that policymakers and clinicians are aligned and that those responsible for healthcare delivery systems allow for patients to be identified, treated according to current guidelines and benefit from ongoing follow up to manage risk. <br />Mental Health<br />Joining Forces to Bridge the Gap and the Launch of the Mental and Physical Health Charter.<br />The Mental and Physical Health Platform was set up in 2008 as a new partnership of associations and individuals from across the disease areas and countries, with the two-fold aim of raising greater awareness of the interplay between mental and physical health, and changing mindsets to address its consequences.<br />What was achieved<br />Representation of HEART EU, one of five major European Advocacy Groups, helped to shape the outcome of this valuable work initially commissioned in 2008 and finally launched in October 2009.<br />Mental health has moved up the political agenda in the past years, with important initiatives including the European Mental Health Pact launched in June 2008. In addition, the EU and Member States are increasingly cooperating on the promotion and protection of physical health. <br /><ul><li>“ As the Mental and Physical Health Charter is officially launched, we call upon authorities, organisations and individuals to enable and deliver change for people living with mental and physical health problems and their surroundings by enacting the following principles and actions: Enabling Change Through Policy, Delivering Change on the Ground and Expanding and Disseminating Knowledge. “</li></ul>An aspect that has received comparatively little attention is the link between mental and physical health, where people with enduring mental health problems are more likely to have physical health problems than the general population and conversely, poor physical health can have a negative effect on mental health. These challenges have a huge impact on people’s lives and lead to enormous costs for society. <br />The Mental and Physical Health Platform was set up in 2008 as a new partnership of associations and individuals from across disease areas and countries, with the two-fold aim of raising greater awareness of the interplay between mental and physical health, and changing mindsets to address its consequences. <br />On 13 October, the Charter and Call to Action was launched and discussed in an interactive setting, with short vignettes followed by debate. The richness of these debates was profound and welcomed by the media. Stakeholder and Advocates, including HEART EU signed up to the ongoing work of the Platform in continued efforts to deliver change for people living with mental and physical health challenges and their surroundings.<br />Counterfeit Medical Products<br />HEART EU is a member of the International Association of Patient Organisations (IAPO), and as such joined other Member Stakeholders to raise awareness and the serious issues surrounding Counterfeit Medicines.<br />What was achieved<br />Counterfeit medical products pose a very real threat to the lives of patients worldwide, and are one of many threats to the quality and safety of medicines available to patients. The prevalence and availability of counterfeit medical products highlights the gross inequity in access to safe and effective medical products that exists around the world. <br />IAPO believes that it is essential to take comprehensive and coordinated action to communicate the risks of counterfeit medical products to patients, and to keep patients safe.”<br />IAPO prioritised the issue of counterfeit medical products as one of many patient safety issues that are real dangers to patients. Along with other patients’ organizations, a substantial contribution to partnerships with other key stakeholders was achieved. In the role of information provider, IAPO produced a toolkit for patients’ organisations that included information enabling patients to identify potential counterfeit medical products and ensure that they acquire medicines that are safe and effective.<br />EPPOSI (European Platform for Patients’ Organisations Science and Industry<br />Founded in 1994 for the exchange of information and discussion of policies in EU human healthcare with a Mission to establish a strong European alliance of patients' organisations, academic science and industry and jointly working on healthcare policies towards treatment and prevention of serious diseases.<br />What was achieved <br />HEART EU is a member of the Main Board of EPPOSI and participated in the 10TH Conference on Partnering for rare Disease Therapy Development with recommendations for action to put into place national plans recommendations for clinical added value data collection and reports at EU level with conditional reimbursement for approved orphan drugs. <br />“ We cannot allow the economic crisis to take from our commitments to research or to negatively affect potentially life-changing policies in areas such as severe and rare diseases. “<br />To also secure funding for research, timely diagnosis, equitable treatment and better care for patients and their families. Rare diseases are a crucial field of research and a precursor of future developments in the healthcare field, making it a societal laboratory for new healthcare systems.<br />BBMRI (Biobanking and Biomolecular Resources Research Infrastructure)<br />BBMRI is a major initiative funded by the EU aimed at coordinating as many European Biobanks as possible with a view to optimising their value and ensuring high quality. This initiative is obviously very important for the development of therapies for patients and consequently we are anxious that principal members of prominent patient organizations are present on the day.<br />What is being achieved?<br />HEART EU is a stakeholder in BBMRI whose goals are in the preparatory (2009-2010) phase to provide the basis for the actual operational biobanking infrastructure and plans to provide a strategy and structure for:<br />pan-European inventory of major European biobanks<br />complementation of existing resources and technologies<br />establishment of clear access rules<br />facilitation of transnational combination and exchange of biological materials and data<br />ensuring coordinated development of resources and technologies<br />reducing the fragmentation of the scientific community<br />embedding activities into European scientific, ethical, legal and societal<br />Plans for the Future<br />Developing International patient-led initiatives: the new Country Support Centre in Vienna, Austria is newly formed, requiring operational funding and directives, will nonetheless develop strategic objectives and core programmes, establish governance structures, share experiences and seek ways to sustain themselves financially to ensure the long-term success of this Country Members State patient-focused initiative.<br />Influencing the international healthcare agenda: HEART EU will campaign on behalf of each and all Member Country Support Centres at Parliament in Brussels and where necessary at other Country Seats of Government on the need for a focus on cardiovascular disease prevention in political manifestos. We shall also lobby for improved healthcare, professional training and accreditation in cardiovascular disease prevention and management.<br />Of the highest priority to complete the Merger of HEART EU with MEDPED (formed in the late 1980’s with a mission to prevent early heart attacks in people with inherited high cholesterol by means of identification, diagnosis and promotion of treatment in persons with inherited high cholesterol and their affected relatives) to commission InterChol (The International Cholesterol Foundation) to ensure a fully rounded platform for operations across the full partnership with International Organisations, Clinicians, Patient Support Centres, Governments, Industry and Not-For-Profit Organisations.<br />