The European Union is increasingly responsible for laws and policies that affect over 500 million Europeans. However, polls show that only 42% of citizens feel their voice is heard in the European Union, while only 31% feel they can trust the EU institutions.
To analyse the causes of this problem, the ALTER Citizens project partners hosted a public event in Brussels, at which citizens from across Europe, civil society organisations and EU officials debated about:
- ethics in the European Parliament
- transparency of European decision-making
- citizen participation in EU processes
Roughly 100 people attended the event and participated in lively debates involving Rainer Wieland (European Parliament, Vice-President, responsible for Transparency), Isabelle Durant (European Parliament, Vice-President, representative of the Working Group on the code of conduct), Christian Linder (Member of Cabinet), Commissioner Maros Sefcovic, (European Comission), EU journalists and civil society representatives.
To see the full programme, click here.
To see the photos of the event, please visit Access Info's facebook page.
In order to bring citizens voices to Brussels in the most effective manner, the partners of the ALTER Citizens Project organised a Citizens' Trip to Brussels which gathered together a total of 46 citizens from across Europe to participate it 2 days of activities including workshops, meetings with public officials and an open seminar entitled Participation, Ethics and Transparency: What citizens want from Brussels. The 46 citizens participating in the Citizens' Trip to Brussels were selected by the project partners Access Info Europe, AITEC, Environmental Law Service, Friends of the Earth Europe, Health Action International Europe and SpinWatch out of a pool of citizens that had participated in other events and campaigns held on the national level. The Citizens Trip to Brussels was a great success in bringing citizens and decision-makers closers together, and helped to show that Brussels is not as inaccessible as some might think.
A Citizens' Report summarising the Trip and gathering citizen views and recommendations for Brussels will be launched in early 2013. To see the video of the Citizens Trip to Brussels:
To see the photos of the event, please visit Access Info's facebook page.
For more information on the citizens' trip, please click here.
As a follow-up to the workshop on citizen participation and lobby regulation held in Navacerrada in early September, Access Info Europe organised a public debate in Barcelona on 22 October 2012.The debate was titled Citizen proposals for lobby regulation and was moderated by the communications specialist Antoni Gutiérrez Rubí.
Both events aim to address the current lack of lobby regulation in the Spanish legal system, whilst articulating new strategies for citizen participation across Europe. This dual-focus on lobbying and participation is due to the popular sentiment that lobbies may exert their influence on politicians and officials in more efficient way than ordinary citizens, and that this can lead to decision-making that does not favour the public interest.
To read the full event report, please click here.
On 12 October 2012, HAI Europe hosted a successful seminar on ‘Access to medicines safety data’ at Het Trippenhuis in Amsterdam. Participants included health experts, researchers, academics, students, regulators, journalists and civil society.
Access to medical research data is an essential foundation of rational health care policy, and the consequences of restricting such access are the subject of growing debate. The HAI Europe Open Seminar explored this topic using the 2009 outbreak of H1N1 influenza (also known as the Mexican or Swine flu) as a case study, with interesting presentations by Dr. Tom Jefferson (Cochrane Acute Respiratory Infections Group) and Ms. Deborah Cohen (British Medical Journal), followed by a lively Q&A session.
After the break, the Open Seminar continued with a discussion on the latest steps the EU institutions are taking to improve open access. Speakers included Dr. Peter Gøtzsche (Nordic Cochrane Centre), Mr. Fergal O' Regan (Office of the European Ombudsman) and Dr. Hans-Georg Eichler (European Medicines Agency). A panel consisting of Ms. Teresa Leonardo Alves (La Revue Prescrire), Mr. Tamás Bereczky (European AIDS Treatment Group) and Ms. Irene Schipper (Centre for Research on Multinational Corporations, SOMO) responded to the presented views. The following Q&A session developed into a constructive discussion about transparency of medicines safety and efficacy data in Europe.
The programme is available here.
Pictures of the event can be found in our Facebook page.
The Open Seminar has been filmed and videos of the speakers presentations and Q&A; sessions can be found online here.
On October 2nd, a third important meeting of Czech watch-dog and transparency NGOs took place in Prague. At the event, Environmental Law Service and its partners presented the progress made so far in shaping solutions to make the common "Citizen Anti-corruption Strategy". This strategy will contain the set of top areas where the Czech Republic needs a systemic change in order to fight against political corruption.
Access Info Europe gathered together a total of 46 citizens and civil society representatives for a full-day workshop on lobbying in Navacerrada, Madrid. A bus was provided to take citizens up to the mountains surrounding Madrid on the evening of 3 September 2012. To encourage networking Access Info organised some ice-breaking activities including a wine-tasting game and dinner for those who stayed the night in Navacerrada in anticipation of the full-day event on the 4th.
The first half of the day, participants focused on strategies for effective citizen participation in Spain and in the decision-making process of the European Union. The second half was full of debate about the regulation and transparency of lobbying based on a comparative assessment of the different lobbying regulation systems around the world. To finalise the day, six working groups were formed to define the concrete demands and mobilisation strategies for a Spanish and Europe-wide campaign on lobbying transparency and regulation.
To read the full event report, click here
On July 4, 2012, HAI Europe attended the Policy & Politics forum on ‘Understanding approaches to generic policies’ hosted by the Pharmaceutical Faculty of the Utrecht University, which is a World Health Organisation Collaborating Centre. Speakers from academia, research consultancies, the pharmaceutical industry, the Dutch Medicines Regulatory Board and civil society contributed their views on the challenges and opportunities in generic medicines policies.
At the same meeting, an equally diverse audience of around 50 people questioned the role of intellectual property (IP) protection in promoting access to and information about medicines.
Intellectual property protection grants products, such as medicines, competition monopoly on the market for a fixed period. The profits from this time-bound monopoly are intended to compensate the inventor for investments made in research and as a result promote further innovation. These objectives should be balanced against the public’s interest in accessing the product.
When it comes to medicines, branded or originator medicines are IP protected for at least 20 years according to EU law. After the patent on the branded medicine expires, 'generic' copies of originator products can be sold on the market. Generics contain the same active ingredient(s) as the patented medicine, but are often significantly cheaper. Entry of generics on the market therefore have great potential to bring medicines prices down and keep them low, which can enable broad access to medicines at a time when health budgets in Europe are facing cuts.
In June, Environmental Law Service and NGO experts created working groups to formulate a robust solutions in nine areas prone to political corruption. These proposals and strategies were already discussed within 13 common meetings in working groups and other meetings are expected. At the meeting, working groups presented theses of their proposals, which when finalised will be published and presented to policy makers as final position papers in February 2013. At the same time the platform will start a campaign to get broad public support for the proposals.
HAI Europe has met with Stop Aids Now! in the Netherlands to learn more about difficulties people face in accessing anti-retroviral (ARV) medicines to treat HIV/AIDS. The increased resistance to first line ARVs, the need to adapt existing ARV treatment to local needs in developing countries, and the high prices of newer ARV therapies through patenting surfaced as the major bottlenecks of the current biomedical innovation model.
HAI Europe and Stop AIDS Now! discussed the importance of new research and development (R&D) models to deliver innovative and affordable medicines that meet public health needs for people living with HIV/AIDS. New models that ensure more transparent, efficient and needs-driven R&D, and result in treatments that are widely accessible and affordable to people in developing countries once they are developed. Principles of open access innovation, inducement prizes and socially responsible licensing were discussed as obvious ways forward.
HAI Europe and Stop AIDS Now! will continue to work together to raise these issues to the attention of EU institutions and European governments, which are in a position to re-centre medical research in the public interest. [...]
Link to TACD/HAI Europe policy paper: Time for the EU to lead on innovation: EU policy opportunities in biomedical innovation and the creation of public knowledge goods: PDF
On April 26th, an important meeting of Czech watch-dog and transparency CSOs took a place in Prague. At the event, Environmental Law Service presented the plan to make the common "Citizen Anti-corruption Strategy" - the set of top 10 legislative recommendations to fight political corruption.
The plan received support by all 20 major Czech watchdog organsitions and transparency CSOs, all of them present at the meeting. As these organisations do not only have the required expertise to create high-quality proposals, but also enjoy broad public support, many believe this will boost the public pressure and eventually help to raise the standards of good governance in the Czech republic. Within 1 month, the organisations will gather for a 1-day workshop to discuss the roots of the problem and identify concrete solutions.
The Water Water Alternative Summit took place in Marseille from March the 14th to March the 17 of 2012, and was a great success bringing together more than 4500 people from over 90 nations in various events around Marseille during the week of 9-17 March.
Over 50 workshops took place under 12 different themes as well as several transversal sessions trying to gather the overarching issues discussed at WWAF.
Several members of the Alter Citizen project participated in the numerous workshops, stunts and demonstrations which were organised.
At this occasion, Aitec produced the leaflet "Fresh water, a hot business". This pedagogic brochure promote people-centered alternatives for a better water management and expose the corporate capture of this common goods essential to everyone.
1000 hard copies of the brochure were distributed to the participants. An interactive flash version is currently in process.
The UK campaign for transparency in lobbying took the debate away from Westminster in April 2012 with a series of meetings around the country. Events were held during the period of public consultation for a proposed register of lobbyists. A meeting hosted by Unlock Democracy and Sheffield for Democracy featured speakers Tamasin Cave from Spinwatch, local Labour MP Paul Blomfield and Lib Dem councillor Joe Otten. The talks stimulated lively discussion and debate with the audience.
Tamasin Cave opened by talking about the current climate of “distrust, sleaze and suspicion surrounding the lobbying industry”, giving examples of recent scandals. She argued that the proposed register is not up to the job. Councillor Joe Otten agreed that the public is losing interest in politics due to a feeling of inevitable corruption and highlighted the importance of transparency of party funding as well as lobbying. Paul Blomfield MP agreed with Tamasin Cave that the challenge is wider than that being proposed, and spoke of the “frightening” disengagement with politics from the general public and the perception that their votes no longer matter.
Despite this gloomy perspective on public engagement from the three speakers, when the discussion opened to the floor the public had a lot to say, particularly in relation to lobbying by companies operating in the region. Throughout the evening, Sheffield Hallam MP Nick Clegg was frequently brought up. Clegg is married to a lobbyist, and has stepped away from the consultation on lobbying despite being Minister for Constitutional and Political Reform. This issue struck a chord both from a local perspective and tied in with the general perception of conflicts of interest.
What emerged from the vibrant and informed debate was a hunger for change: speakers and the audience alike showed a strong will to open up lobbying.
The minister then in charge of the reforms, Mark Harper (since replaced by Cabinet Office minister Chloe Smith) was the key speaker at a well-attended public debate in England’s second city, Birmingham hosted by Unlock Democracy and Take Back Parliament. This was the first opportunity transparency campaigners had had to quiz the minister.
Other speakers included Unlock Democracy Director Peter Facey, Tamasin Cave of Spinwatch and the Alliance for Lobbying Transparency, former journalist turned lobbyist Marc Reeves, and Chris Crean of Friends of the Earth.
It was notable that Mark Harper kicked off the meeting by putting some distance between himself and the proposals in the government’s current proposals. Tamasin Cave spoke about how lobbying had been in the news a lot due to scandals such as the Liam Fox / Adam Werrity affair and the recent “cash for Cameron” scandal, but the real scandals were not reported simply because we have no way of knowing what is really going on. A lobbying register would fundamentally change the nature of the debate, she said, particularly in regard to controversial policy areas such as the recent Health and Social Care Bill, because we would be able to see quite how much companies were willing to spend to influence government decisions. Peter Facey emphasised that he was a lobbyist as well and did not want to introduce any system which he himself would have trouble complying with. In his view however, this would not be a problem.
A large number of points were raised from the floor. A great many people were concerned about the narrow scope of the register as laid out in the consultation paper. To that, Mark Harper had a simple response: write in to the consultation and let him know.
Overall, it was a very informed and lively debate. There was broad agreement across the panel and the audience that a more comprehensive register than the one in the consultation proposals.
On March 13, 2012, HAI Europe met with a representative of La revue Prescrire (in French), (in English)]. Prescrire is a French-language independent bulletin providing objective information about medicines to prescribers. We exchanged concerns about the review of the Access to Documents Regulation 1049/2001 - an initiative of the Danish Presidency (Jan-June 2012). This law forms the legal basis for medicines bulletins like Prescrire, researchers and consumer organisations to obtain medicines safety information held by European institutions, such as the European Medicines Agency. Full public access to such data enables independent analysis that can inform healthcare providers’ prescription and dispensing practices, as well as patients’ treatment decisions. HAI Europe and Prescrire are working together to ensure that open access to data be expanded.
Recent news concerning the Access to Documents Regulation: Read the letter ‘Access to EU Institutions’ document is essential to advance transparency and to serve public health’.
On 8 February, 2012, HAI Europe met with Dutch human rights NGO, WEMOS (www.wemos.nl), which works to draw government attention to its obligation to respect, protect and realize the right to health. Before new medicines are marketed, they are tested in humans to determine their efficacy and safety in clinical trials. WEMOS calls for adherence to the rules that protect vulnerable people against unethical clinical trials.
Under EU law (Directive 2001/83/EC as amended by 2003/63/EC), medicines can only be granted market authorisation in the EU if the clinical research process has respected ethical guidelines, such as the Declaration of Helsinki. Recent investigative reports in the Independent claim that unethical clinical trials were carried out in India and some of the data from those trials has subsequently been used in market authorisation procedure for medicines on the European market. This series of events suggests that necessary checks on whether ethical guidelines are respected in clinical trials conducted outside the EU, often in developing countries, are not done.
Greater access to raw data and reports from clinical trials held by the European Medicines Agency would allow public scrutiny of ethics of clinical trials. EU governments have a role to play in ensuring the respect of ethical principles in conducting clinical trials and gathering data destined to support new medicines on the market in Europe.
For more information (in Dutch) please visit.