Position Paper/EU Policy

CF Position Paper to European Parliament
Access to information about prescription medicines is further restricted!

Great disappointment for patients as result of the vote in the Environment Committee on the Grossetête and Müller reports 2 October. The Commission and Members of European Parliament have repeatedly stressed that the review of pharmaceutical legislation, and particularly the section on information to patients (art. 86-100), should serve patients’ legitimate needs and public health in general.  This is not happening!

As Cystic Fibrosis patients we welcome the rejection of the Commissions’ proposed pilot project.

However, instead of increasing access to patient information from different sources, restricting the information on prescription medicines will be further restricted.

Rather than focusing on our need for useful information, a majority of the committee in their zeal to ban any communication about prescription medicines from pharmaceutical companies have concluded that only government-approved sources of information should be available to us.

We find this patronising attitude offensive and are deeply disappointed.

We as Cystic Fibrosis patients truly believe that all patients have a fundamental human right to have access to all kinds of information from all available information sources about their health, medical conditions and the availability of treatments and medicines.

Therefore we urge you to reject

• Amendment 99, which brings information to patients within the scope of the Directive
  
  ‘information on medicinal products’ shall include objective reports on the composition, action, quality, indication, contra-indication and adverse reactions as well as the results of canvassing activity, and “advertising of medicinal products” shall include any form of door-to-door marketing, (am 29) canvassing activity or inducement designed to promote the prescription, supply, sale, consumption or awareness of the availability of medicinal products; advertising shall include in particular:

• Amendment 113, which prohibits patients from acquiring any information form pharmaceutical companies.

In our view - all amendments supporting the inclusion of awareness of the availability of medicines will undermine information and education programmes produced by patient organisations and other external independent sources, and very likely decrease the information currently available to patients.

This would effectively render it impossible for any new medicine to come to a patient’s attention from any source other than a doctor, thereby compromising patient independence and reinforcing the old fashioned and paternalistic hierarchical model of health care. It also undermines information and education programmes produced by patient organisations and other external independent sources.

17 October 2002
Danish Cystic Fibrosis Association