by Jan Geissler, Patient advocate and co-founder, CML Advocates Network, Switzerland

Patient advocates from all across Europe, attending the European Cancer Congress on 27 Sep to 1 Oct 2013 in Amsterdam, represented by 70 patient advocates that have signed a petition during the congress, strongly object to the regulation which forbids patient advocates to enter the exhibition hall.  

Exhibitions like these have been a key meeting point for all stakeholders, including researchers, pre-clinical developers, clinicians, nurses, media such as medical journals, professional societies, the research industry and patient representatives, for many years and across many countries.

Patient advocates attend in their capacity as experts, with most of them being members of government committees, regulatory authorities, research groups and healthcare advisory boards. Information shown in the exhibition is available without access restrictions on the internet, on authorities' websites, and in medical journals. Patient advocates must be entitled to access all information as equal stakeholders in healthcare. 

With their signatures, the patient community strongly objects to discrimination by the policy executed at the European Cancer Congress 2013.

We were told that the organizers, ECCO, ESMO and ESTRO, see the problem as being caused by the Dutch Medicines Act, but the fundamental problem seems to be the 2001 European Directive on medicines advertising/Information to Patients that each European country has transposed into local laws.

The Dutch regulator is enforcing their law that implements the European directive.

In the case of this conference, it was said that ECCO would be exposed to a potential fine of EUR 150,000 if non-prescribers were seen in the exhibition area where booths might address prescription medicines.

The Dutch authorities seem to enforce the European directive vigorously. However, a patient advocate from the Netherlands has reviewed the Dutch Medicines law briefly and has not discovered legal texts that would support this vigorous interpretation.

We think this is an anachronistic, patient-unfriendly, non-21th-century, non-internet-era regulation which assumes that patient advocates are not capable of rationalizing manufacturer's information about medicinal products' names and information that 'prescribers' are allowed to get.

It is a throwback to a time when patients were the subjects of medicine rather than well-informed partners and managers of their own disease.

We have addressed the underlying, unbearable current EU information to patients directive for years in Brussels, but due to the opposition of some EU Member States against the European Commission's new proposal, the legislative initiative has again become a lame duck, being deadlocked in the EU council for some years now.

See my blogpost as of 2010 from:
http://www.rarediseaseblogs.net/2010/04/21/information-to-patients-debate-2010-as-if-the-internet-was-still-a-walled-garden/

Official information about the ITP directive:
http://ec.europa.eu/health/human-use/information-to-patient/legislative_en.htm