ALTER-EU Newsletter - 4 - Active Europe, EATG

The first is Active - sobriety, friendship and peace, a European youth organisation which brings together 25000 young people who have decided to be teetotal and consider alcohol consumption an obstacle to the development of individuals and society. The second is the European AIDS Treatment Group (EATG), a community organisation that promotes the interests of people living with HIV/AIDS.

We asked Active and EATG:

1.  Why they joined ALTER-EU;
2. How they see their role in relation to other members;
3. And what they see as examples of urgently needed progress on social, environmental and consumer-protection reforms that have been postponed, weakened or even blocked as a result of influence exerted by corporate lobbyists.

Active

1. The decision to join ALTER-EU was a simple one based on two ideas that guide us in our work:

1. We want to express our support for important initiatives, projects and causes. ALTER-EU is definitely a very important organisation and the cause is something we want to back up;
2. We want to engage in coalition building with organisations that we share interests with to create synergies in making Europe a better place to live. We are convinced that the work of ALTER-EU promotes democracy and this is, too, a high virtue in our work.

2. Active already cooperates with ECAS and EPHA which are already ALTER-EU members.. Their membership in ALTER-EU also inspired us. As we said above, we are ready for building coalitions with other organisations that we might encounter through our engagement in ALTER-EU. Within ALTER-EU we are looking forward to sharing information about the practices and problems of industry lobbying that we encounter and have to face in our daily work. In our case this mainly is about the lobby for the alcohol and tobacco industry.

But we see that the (lobbying) conduct of all too many industries is questionable, so that we look forward to learning how other civil society organisations handle these problems in their field of expertise.

We would like to contribute our share to developing a Europe of civil society and civic participation, instead of a Europe dominated by corporate interests and industry lobbies.

3. Europe is the heaviest drinking region in the world, and the costs of alcohol use are more than €125 billion each year. To tackle this problem the European Commission drafted a strategy (EU strategy to reduce alcohol related harm) that got watered down in many parts by extremely aggressive alcohol industry lobbying. Also in the drafting process of the WHO global alcohol strategy (which was adopted in May 2010) the alcohol industry mounted heavy lobby campaigns, but it was not as successful as in the EU process. In our field of working for public health, a sustainable society, more democracy and diverse and meaningful youth for young people, the alcohol industry, or Big Alcohol, is really a giant opponent who maintains a Beer Club in the European Parliament and who has learned from the mistakes of the tobacco industry.

To learn more about Active Europe, visit: http://www.activeeurope.org/.

EATG

1. EATG supports and shares the concerns of ALTER-EU regarding the danger of undue influence exerted by corporate lobbyists on the political agenda in Europe (and elsewhere). As a European organisation we collaborate with many different partners and stakeholders in the field of drug development and access to treatment, amongst them the pharmaceutical industry.

It is crucial to realise that – even if we share some common interests – the motivation for certain steps is basically different. Economic reasons are the main driving force for pharmaceutical companies. Civil society usually takes a more patient-oriented, human rights based (see our actions on criminalisation, IDU rights etc) and public health approach. 

We think it is important that agenda-setting and decision-making processes are not driven by economic reasons alone and that other perspectives are also taken into consideration from civil society groups, academics, et cetera.

Corporate lobbying is a reality. We have invested a lot in previous years to increase our transparency and also to guarantee our independence in our work. This is not always easy. We therefore strongly support the Alter-EU initiative which shares this concern.

2. As a patient advocates' organisation, we have a long history and experience in working with corporate stakeholders and we believe that there are strong and good reasons to do so. We however also see that many times the motivation from corporate lobbyists is inspired by ideas that are not in line (or even against) the points of view from civil society.

EATG has been working for a long time to find the right balance between collaboration, communication, independent acting and keeping a critical mind in collaborating with pharmaceutical companies. This experience could be of help for the coalition.

3. The discussion on ‘direct to consumer information’ regulation is an on-going saga with potentially negative outcomes.Many differences remain between different member states on how the interaction between patient groups and the general public should be regulated.

Examples:

• How could (or even should) the pharmaceutical industry interact with civil society & patient groups? 
• How should they share information regarding their products, on trial results? 
• How can we ensure true transparency and trusted interaction?
• What should be taken into consideration, how should safe interaction being implemented on sensitive topics such as product / drug development, expanded access programs for new drugs, access & reimbursement issues at national level after approval, post marketing safety etc?

In general, a meaningful inclusion of patients and expert patient groups remains weak, often happens ad hoc or not at all (we realise this also depends on the disease area). Everybody agrees that patients / expert patient groups should be included everywhere. However in reality, many important decisions are taken without them, and the groups merely serve as audience for marketing strategies.

To learn more about EATG, visit: http://www.eatg.org/.