After we are returned to Salzburg and also in Bad Hofgastein everything takes its usual way, we would like to take this opportunity and sincerely thank all those who have provided their commitment to make the EHFG 2010 a great success.
A very big “Thank you” goes to
• the IT-Team
• the congress staff (Kongressbetreuer)
• the technical team of the congress centre
• the team of the shuttle desk
• the pressteam (link)
• the photographers (link, Galerie)
• the organizers of the workshops and parallel forum sessions
• the catering service
and all the other busy helpers, which are unnamed here.
EHFG 2010 offered for many delegates the possibility for work as speaker, Young Gasteiner or programme planner. It also offers new suggestions for professionals in the health sector. Hence we think all delegates will go home very healthy, by the reason they did great work here in Bad Hofgastein and they will still do great work in the next year.
We hope, dear reader, you enjoyed EHFG 2010 (live or at least via live-blogging) and we hope that those of you, who could not participate in fact here in Bad Hofgastein, enjoyed the live blogging from the Congress by the Young Gasteiner Blogging Team. We – the EHFG office team, who could not join the sessions personally – definitely enjoyed the blog entries because thereby we got some impressions and information from the sessions, too.
Herewith we thank the Young Gasteiner Blogging team for the great fulfilling of their blogging task. We also thank the other Young Gasteiners for the fulfilling of their tasks.
Have a good trip home. Hopefully we will meet again next year on EHFG 2011!
People diagnosed with rare cancers are faced with a multitude of challenges ranging from delay in diagnosis to availability and access to timely and effective treatment. Rare cancers constitute 20 percent of all cancer cases. Moreover, if rare diseases across all EU MS are considered collectively, they represent a substantial health burden which cannot be ignored. Cross border health care and collaboration between all the EU MS in the field of rare diseases is the way forward in order to affectively improve the access of good quality care to people living with rare diseases.
The European Commission has recognized the importance of rare diseases and a lot of resources are being channeled in improving the care of people diagnosed with rare diseases. It is therefore of utmost importance to ensure that patients with rare diseases are identified and provided with available up to date good care.
In a recent study surveying the access to treatment of hematological malignancies in Europe, it resulted that even though there is a general increase in the use of drugs for hematological cancers, there is an evident discrepancy and variation in the access to drugs between EU MS. This effect is undoubtedly multi-causal but it also reflects the political commitment of countries to invest in good quality care for rare cancer patients and the problems faced with affordability and cost effectiveness of the treatment for rare cancers.
Apart from the issue of incremental costs vs benefits and QALYs challenges in the economic evaluation of cancer drugs include trial designs, cycling of drugs and ethical considerations, which often make a full cost utility analysis difficult. However potential opportunities in rare cancer drug evaluation lie in early reimbursement with continuous evidence development; alternative pricing models; diagnostics linked to optimal treatment and real life data.
In order to increase the uptake of cancer drugs across all EU countries, risk sharing between countries and alternative pricing is needed. The formation of collaborative partnerships is also essential to generate sustainability for all stakeholders.
During the workshop, Prof Bengt Jonsson stated that, “We are investing a lot of money in building a bridge, but when the bridge is ready and set up we are making people pay a very high price to cross the bridge. Unfortunately many people cannot afford to pay such a price and there is no easy way to solve this”.
The EU commission is supporting EU MS in achieving sustainability in rare cancer drugs provision, however N. Fahy (Head of Unit Health Information, DG SANCO, European Commission) emphasized that this is ultimately the responsibility of the member states and not of the commission. The 3 main pillars of action of the Commission are: 1) the identification and correct classification of rare diseases 2) National Plans on rare diseases for every MS 3) Joint action on rare diseases between MS on rare diseases.
Even though actions to enhance care of rare diseases in all member states are still in the early stages of development and faced with an array of difficulties and challenges, many ongoing actions such as the development of e-health, cross border health care and advances in health technology assessments are already forming a solid platform to improve the health of people living with rare cancers.
Maria-Louise Borg (Young Gasteiner)
Although there is a systematic approach to inform citizens in urgent situations, it seems difficult to reach all. Using social media opens up new positive ways for an interactive dialogue with young people. Authorities should integrate the use of social media in communication strategies. But as long as access to these medias is not guaranteed for all, it is however a complement to traditional ways to get across information.
The need to be out there however, on the net is growing and public actors need to learn more about how to use and respond to others using this media.
Authorities do not want to be slow, and topdown … but present, quick and delivering the facts in a trustworthy way.
And not the least it is good for all to know what is being said there by whom and in what tone.
Nina Bergman – Young Gasteiner