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Patient advocate groups protest anachronistic Dutch Medicines Act at 2013 European Cancer Congress

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

 

 

 

 

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Judith Taylor / 01.10.2013

I have attended many congresses in the Netherlands and elsewhere throughout my working life as a (medical) publisher and since, as a patient advocate, and have never seen the Dutch Medicines Act applied in this way before. At the European Thyroid Association conference in Leiden that I attended two weeks ago there were scrupulous badge checks but I was not aware of any restrictions on any groups of delegates being able to access all of the sessions and exhibition areas.

The policy implemented at the ECC was a lose-lose situation all round and not least for the organisers who had to deal with so many enquiries and complaints. It was not only patient advocates who were affected. The definition 'non-prescriber' applied at the congress also included basic researchers, pharmacologists, pharmacists, policy-makers, regulators, publishers and journalists. I witnessed several quite emotional scenes when people who had not been told of this policy at the time of registering were denied access to the exhibition hall. It was also detrimental to the interests of exhibitors who had non-pharma products on display. About one third of the exhibition space was taken up by non-pharma companies such as manufacturers of testing kits, radiotherapy equipment, publishers, booksellers, and academic and professional associations. Non-prescribers were likewise prohibited from entering this section of the exhibition so the exhibitors themselves may well have felt the impact.

Ironically, those patient advocates who participated in the Patient Advocates Square were provided with exhibitor badges which permitted access to the exhibition area even though the Square itself was outside the exhibition area, making this policy even more incomprehensible.

Judith Taylor
Secretary/Director
Thyroid Cancer Alliance

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