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Alzheimer Europe and its EU policy priorities

Jean Georges, Executive Director of Alzheimer Europe

Q1. First of all, tell us about Alzheimer Europe. What work do you do? What are your objectives?

Alzheimer Europe is a non-governmental organisation (NGO) aiming to provide a voice to people with dementia and their carers, make dementia a European priority, promote a rights-based approach to dementia, support dementia research and strengthen the European dementia movement. We have 40 member organisations, representing 35 different states across Europe.

 

Q2. How do you involve people with dementia and their carers in your policy activities?

Alzheimer Europe involves people with dementia and their carers in all aspects of our work. They help set our agenda, our priorities and inform everything that we do. One way in which we have been able to do this is through the European Working Group of People with Dementia (EWGPWD). Launched by Alzheimer Europe and its member associations in 2012, the group is composed of people with dementia nominated by their national Alzheimer associations. They work to ensure that the activities, projects and meetings of Alzheimer Europe reflect the priorities and views of people with dementia. Members of the group have previously given keynote presentations in the European Parliament and our European conferences, as well as contributing to consultations for different European projects. One of our recent projects was our European Carers Survey 2017, a research survey conducted across five countries. The results have provided valuable insight into the experience of carers in relation to the process of seeking and receiving a diagnosis of dementia which will help inform our work.

 

Q3. What are your EU policy priorities?

Alzheimer Europe has been working towards making dementia a public health priority in Europe and has sought to achieve the implementation of a European Dementia Strategy or to see the EU commit to the World Health Organization’s Global Action Plan on Dementia, which runs from 2017-2025. In addition, we want to see health remain a key priority within the European budget and we fully support the #EU4Health campaign coordinated by the European Patients’ Forum and the European Public Health Association. Additionally, we also are working with partner organisations to ensure that the EU’s research programme “Horizon Europe” continues to be prioritised, particularly as many key areas of European dementia research currently underway are primarily funded through this source.

“Alzheimer Europe has been working towards making dementia a public health priority in Europe.”

Q4. What is your hope for potential forthcoming Alzheimer treatments?

Ideally, we would like to see a cure for Alzheimer’s disease and other causes of dementia. Unfortunately, the failure rate in drug development has been particularly high in recent years. However, that is not to say that important progress has not been made in recent years in the way in which innovative research into brain scanning, biomarkers and data usage have progressed well and show promise that early (pre-symptomatic) diagnosis may be possible, as well as expanding our understanding of the condition which may help towards the discovery of a preventative or curative intervention. We continue to be encouraged by the number of ongoing clinical trials in our field and are cautiously optimistic that some of these will produce positive results in the coming years.

 

Q5. What are your thoughts on the introduction of a Europe-wide HTA system and its possible impact on potential forthcoming medicines for people with Alzheimer’s disease?

One of the current oddities of the European system is that the safety and efficacy of new medicines is evaluated at a European level by the European Medicines Agency, resulting in market authorisation for the whole of the European Union. Yet health technology assessments, pricing and reimbursement decisions remain a national competence which often results in inequalities in access to innovative treatments for European citizens. A recent decision by the French Health Ministry resulted in current medicines for Alzheimer’s disease no longer being reimbursed in France, whereas these medicines continue to be reimbursed in other EU countries. It would be our hope that a Europe wide HTA system would abolish some of these inequalities, however, any such system would have to ensure complete transparency in how assessments are made and allow the views of patients and patient organisations to be included in the process.

 

Q6. What are your key policy activities for 2018/19?

As we come towards the last quarter of 2018, our policy activities are focused on some of our publications which will include a report into some of the ethical challenges faced by people with dementia and carers from ethnic minority communities. Additionally, we will publish our 2018 Yearbook which will examine the dementia strategies currently in place in countries across Europe, exploring their similarities and differences. Into 2019, we are looking towards the European Parliament Elections in May and beginning to consider how we work with our members to encourage candidates in their country to sign up to a pledge to make dementia a European priority and to join the European Alzheimer’s Alliance (EAA). The EAA is a multinational cross-party group that brings together Members of the European Parliament (MEPs) to support Alzheimer Europe and its members in making dementia a public health priority in Europe.

“Alzheimer Europe does not solely interact with the European institutions, but also works on national policies such as care standards, guidelines for diagnosis and treatment or legal issues …. which are not on the agenda of the EU institutions.”

Q7. How do you engage with the EU institutions?

Alzheimer Europe engages with the EU institutions primarily, though not exclusively, through the European Parliament. For MEPs who have agreed to join the EAA, Alzheimer Europe keeps them updated with the latest developments, including hosting lunch debates within the parliament three times per year on different themes. Presently, 126 MEPs from 27 members states are members of the EAA.

 

Previously, we also engaged through the Expert Group on Dementia until, disappointingly, it was disbanded in 2018 by the European Commission. We will continue to use other platforms such as the Health Policy Platform and Commission consultations to engage with the institutions.

 

Q8. What are you doing in terms of raising awareness of national policies on dementia?

Alzheimer Europe has worked on this area in a number of different ways, including the creation and publication of the ‘Glasgow Declaration’ in 2014, calling for the creation of a dementia strategy in every country (as well as the creation of a European Dementia Strategy). Later this year, we will publish our 2018 Yearbook which will provide an overview of current national strategies, examining the similarities and differences in focus between the strategies.

In addition, we have previously (2012 and 2015) published the Alzheimer Europe Dementia Monitor, examining the status of dementia within countries across Europe, including in relation to policy, practice, healthcare provision and research.

 

Q9. How do you work with corporate sponsors and partners?

Alzheimer Europe works with members, partner organisations and sponsors in a number of different ways. One such way is our Company Round Table which serves as a platform for our members and sponsors to engage with each other, setting out their priorities and current work/projects, as well as sharing information and knowledge across a range of policy and practice matters. Alzheimer Europe accepts sponsorship for a number of its projects and activities but always ensures that the organisation keeps its complete independence as well as editorial and managerial control over its activities. All such sponsorship is always acknowledged transparently on our website. In addition, we often work with these partners on European funded projects, particularly through the Innovative Medicines Initiative (IMI2), including on AETIONOMY, AMYPAD, EPAD, MOPEAD and PARADIGM.

 

Q10. What is the balance in terms of responding to the policy agenda and coming up with your own
policy initiatives?

Naturally, Alzheimer Europe wishes to proactively set the dementia policy agenda to ensure it reflects the experiences and views of people with dementia, their families and carers, and where possible, involves them as equal partners in the process. To set this agenda, we carry out campaigning work such as the Glasgow Declaration, European Election Campaigns and the European Alzheimer’s Alliance. However, the nature of European policy process means that this is not always possible, meaning we sometimes have to work in a more reactive way, working with partner organisations to respond and shape policy and legislation. Alzheimer Europe does not solely interact with the European institutions, but also works on national policies such as care standards, guidelines for diagnosis and treatment or legal issues (e.g. advance directives, proxy-decision making systems, and informed consent) which are not on the agenda of the EU institutions.

“An overarching policy success would be to see each country in Europe have a national dementia strategy, with clear evidence of progress towards their implementation.”

Q11. Tell us about your work with the WHO.

A particularly encouraging sign of the growing recognition of dementia as a global priority, was the publication by the World Health Organization (WHO) of a “Global Action Plan” on dementia in 2017, outlining seven ‘action areas’:

  1. Dementia as a public health priority.
  2. Dementia awareness and friendliness.
  3. Dementia risk reduction.
  4. Dementia diagnosis, treatment, care and support.
  5. Support for dementia carers.
  6. Information systems for dementia.
  7. Dementia research and innovation.

Alzheimer Europe was consulted during the development phase and participated in the launch event of the Plan. WHO representatives have contributed to our Dementia in Europe Magazine and presented at our Annual Conferences, as well as in meetings we organised with our national member organisations. We look forward to our continued engagement with WHO and to supporting its Global Dementia Observatory.

 

Q12. What would overarching policy success in Europe look like to you?

An overarching policy success would be to see each country in Europe have a national dementia strategy, with clear evidence of progress towards their implementation. We would like to see an overarching European Action Plan which could provide coordination for collaboration across research and practice. At the same time, the EU should play a key role in delivering on the WHO’s Global Dementia Action Plan. Finally, we would like to see a greater proportion of resources going towards dementia research, reducing the current inequity between dementia and other NCDs, with Horizon Europe’s programme including a specific mission on dementia.

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Health Policy Talks
This series of interviews has been initiated by Anna Dé in May 2018 to talk with the movers and shakers on European health policy matters.
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