Dear Friends of ECPC,

ECPC has continously advocated that information about treatments should be tailored for the real needs of the cancer patients. Informed choices and optimal treatment are only possible if patients have access to high quality information about treatments, trials and trial results. Information barriers result in poorer health outcomes, increased demand on health resources, reduced adherence to therapies, dissatisfaction and distress for patients.

The discussion about providing information about medicines to the public has been controversial for more than a decade. There is a great deal of reluctance, as many EU Member States, authorities and consumer groups are critical of the confusion between information and advertising. At the same time, through services like Google, a "walled garden", as still proposed by some groups, has become a myth already today. The present situation is untenable as access to information depends on how well patients can use the Internet and which language they speak.

Over the last months, the ECPC team has worked hard on making the cancer patients's needs on information heard. The reason is that a new legislative proposal by the European Commission on "Information to Patients" is currently being discussed. The proposal aims to define the terms under which non-promotional information on prescription-only medicines can be provided to the general public.

To raise the cancer patients' voice,

• ECPC worked with a number of Members of the European Parliament and has written specific letters to the Rapporteurs in charge of the legislative proposals, informing them about the real cancer patients' needs.
  
  
• ECPC spoke at a number of conferences and events, for example on "Patients' needs and Expectations on Information" at the "DIA Euromeeting" (see slides here), or in a panel discussion of "European Voice" chaired by Phil Hammon, a British doctor and journalist, together with MEP Fjellner, the president of the permanent committee of European doctors (CPME), and the CTO of the Swedish FASS medicines portal (see report here)
  
• ECPC has aligned its positions with other pan-European patient groups like the European Patients' Forum or Europa Colon, to speak with a single voice.

For your further information, we are attaching a one-page summary on "Information to Patients" (ITP, see here), outlining the key messages that we have put forward in the various debates, statements and discussions.

Regarding the legislative timeframe on the draft report on the ITP proposal (prepared by Rapporteur MEP Christopher Fjellner), a first exchange of views was held in ENVI Committee of the European Parliament on 17 March. The deadline for amendments will be 17 April 2010.

Kind regards,
Denis Horgan, ECPC Political Affairs Manager
Jan Geissler, ECPC Director

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ECPC - European Cancer Patient Coalition
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