Position Paper / European Policy

CF Position Paper to European Parliament, Environment Cttee
Pharmaceutical Review 2001
Information to Patients (art 86-100)

Dear MEP,

With a view to the discussion and vote in the Committee on the Environment, Public Health and Consumer Policy on the review of pharmaceutical legislation, and especially on information to patients (art. 86-100), we urgently would like to ask your support for the following:

• All patients have a fundamental human right to have access to all kinds of information about their health, medical conditions and the availability of treatments and medicines.

• Information should be available for all disease areas, and not be limited to three disease areas.

• Patients differ in their views on information requirements from consumer groups. Patients do not want to be patronized and are perfectly able to make up their own mind. They may be vulnerable, but it is inappropriate to assume they are naïve.

• Awareness of the availability of medicines should not be included under the definition of advertising. This might decrease the present information already available to patients.

• Information should be accurate, reliable and easily understandable and be available from a wide unrestricted range of balanced sources.

• Patients should be represented within the EMEA body that will examine information material.

• Principles of good practice should not be established under comitology procedures.

Therefore, we ask you to support the following recitals and amendments tabled to the Grossetête report:

Recitals No.: 57, 58 and 59
Amendement No.: 254, 255, 256, 257, 270, 272, 290, 291, 300 and 307

Furthermore, we also would like to draw your attention to the necessity that the Commission provides core funding for European patient groups:
We support amendments 250, 255, 270 and 271 to the Müller report.

7 September 2002
Danish Cystic Fibrosis Association