EFA attends public hearings on the EU Tobacco Products Directive
The European Economic and Social Committee (EESC) held a hearing in Brussels on the 19 February in order to allow stakeholders of the new Tobacco Products Directive to inform themselves on positions on the proposal. EFA, represented by Susanna Palkonen, was surprised that around two-thirds of those present represented the tobacco industry. However, the health NGOs presented a strong case for an even stronger directive (which would include the famous plain packaging) and pointed out that that the cost or ill health, work absence, disability and death due smoking need to be taken into account in any economic calculations. EFA expressed support of this view on behalf of people with allergy, asthma and COPD and emphasised the devastating impact of tobacco in our disease areas. Martin Seychell from the European Commission urged the EESC to take into account not only economic, but also social costs of tobacco use. EFA recommends readers to view the Cancer Research UK video on the impact of tobacco packs on children.
Another public hearing on the same subject was organised at the European Parliament by the ENVI Committee (Environment, Public Health and Food Safety Committee) on the 25th of February. EFA was represented by EU Policy Officer Roberta Savli. The view of policy-makers was presented with the Irish Presidency underlining its strong support for the Directive. It has made the text one of the priorities of its 6 month Presidency. The second part of the discussion was focused on the views of major stakeholders, namely the tobacco control community and tobacco industry, while the third part outlined the main controversial aspects of the proposal, such as combined health warnings, security features to prevent illicit trade and the banning of charactering flavours. On the same subject, the following day the annual general assembly of the European Network for Smoking and Tobacco Prevention (ENSP) took place. EFA is an associated member of ENSP and was represented by Roberta Savli. The strategy discussion of the meeting was focused on the presentation of the Tobacco Products Directive, its processes in the European Parliament, Council and EESC and the way NGOs active in the field of tobacco control can influence policy makers to strengthen the provision of the proposed legislation.
EFA participates in National Institute for Health and Disability Insurance (NIHDI) event ‘Meeting on role of patients and citizens in priority setting for pharmaceutical innovation’
On February 22nd EFA Membership and Programme Officer David Brennan attended the NIHDI event in Brussels addressing the role of patients in priority setting and pharmaceutical innovation in Europe. The event was coordinated by the University of Utrecht and the World Health Organisation as a part of the Priority Medicines for Europe and the World Project in 2013, reviewing issues and brainstorming solutions for patient involvement. In this context, priority medicines’ are considered to be medicines needed to meet the priority health care needs of the population but which have not yet been developed. Presenters confirmed learning how to orchestrate alignments with patients will be a key question for the future in priority setting for research of priority medicines.
The plenary addressed presenting lessons learned from patient and citizen involvement, the presentation of results from surveys of patient associations and an overview of best practice models for patient involvement. In the afternoon, breakout groups discussed key questions relating to patient involvement and brainstormed plausible solutions to circumvent existing barriers to their participation in priority setting. After discussions, most groups had generated similar conclusions: including patients in planning phases, the use of focus groups to decrease workloads from surveys and increase effectiveness.
In addition, groups identified a clear need for specific measures to be taken in for meaningful integration of patients instead of involvement through ‘illusionary’ or tokenistic means. First, a legal integration of patient involvement into research proposals and applications would be necessary, which would be beyond the acquisition of a signature and demonstrate proof of patient perspective in the proposal or application. Secondly, training programmes for programme and work package coordinators to educate them on interactions with patients was deemed to be as necessary as scientific training is for patients. Lastly, the initiation of curriculums and modules for undergraduate science studies in universities was seen to be the only way of changing the ‘mindset’ of the future generations of scientists.
EFA was encouraged by the optimistic and positive outlook adopted by a majority of participants in the event on the inclusion of patients in research projects and agendas. The consistency of event conclusions from different participants was extremely encouraging, especially since patient representatives were representing a minority at the event itself. As a result, the event appeared to be very successful in establishing clear justification for patient involvement in priority setting.
EFA attends 2nd EAACI Food Allergy & Anaphylaxis Meeting
EFA President Breda Flood attended the 2nd EAACI Food Allergy & Anaphylaxis Meeting (FAAM 2013) in Nice, France, on the 6th to the 10th of February. In total there were 3 plenary sessions, 8 symposia, 2 workshops and 3 oral abstract and poster sessions during the meeting. For the first time one of the workshops was targeted at dieticians. Each of the days was devoted to a different theme and on day 2 there was a Patient Organisation workshop on food allergy and patient’s perspective entitled ‘Allergies to die from or allergies to live with’
During the meeting the EAACI Food Allergy and Anaphylaxis Public Declaration was introduced by EAACI President Cezmi Adkis, EFA President Breda Flood and EAACI Patient Organisation member from the USA, Mary Jane Marchisotto. EFA had commented the declaration previously.
Breda Flood endorsed the EAACI Campaign and emphasised the necessity of clear labelling of foodstuffs. She outlined the work of EFA in this area and recalled the very well-attended “EFA may contain” event held at the European Parliament last September, at which EAACI members were present and Professor Antonella Muraro was a key speaker. She voiced the support of EFA for the adoption of the International Minimum Standards for the Allergic Child at School and thanked Profs Adkis and Muraro for their vision/foresight in facilitating the establishment of the EAACI Patient Organisation Committee, of which she is a member.
Finally on the day 3 and the morning of day 4, five working groups discussed and progressed the work on the Food Allergy and Anaphylaxis Guidelines. This work is continuing and the Guidelines are expected to be finalised by June 2013. Breda Flood was a member of the ‘Quality of Life’ working group in this.
EFA in other meetings
EFA was also represented at the EPF Board and HEAL Executive Committee meetings this month. EFA Board Secretary Per-Ake Wecksell took part in the European Medicines Agency worshop on medical errors on the 28th February – 1 March, and our representative at the EMA, Lina Buzermaniene attended the joint meeting of the EMA Patient and Consumer Working Party (PCWP) & Health Care Professionals Working Party. More on these follow in the next ezine.