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Camille Lezaun

The creation by the ANSM (National Agency for the Safety of Medicines and Health Products) of a Scientific Committee (CSST) on the issue of therapeutic cannabis in France has raised hopes for regulation. Many patients are already treated with cannabis and, lacking legal access and control, self-medicate by providing themselves on the black market despite the risks involved. However, these are still largely absent from the emerging debate. Yet, these are the first ones involved. It is to make their voices heard that an association has been created and proposes to gather their testimonies and to represent them to political decision-makers and regulators.

An experiment of medical cannabis in France

Medical cannabis is already partially legal in France but only in the form of pharmaceutical products whose access is extremely limited and for a list of restricted pathologies. The use of the plant itself is prohibited. Last September, in the international context of a growing legalization of medical cannabis, the ANSM announced the creation of the CSST to discuss the medical use of the cannabis plant.

In December 2018, the committee concluded the relevance of the introduction of therapeutic cannabis in France and recommended that an experiment be conducted nationally. He must now decide on the modalities of regulation of this experiment. This includes issues of effective accessibility, conditions for expanding the list of conditions, reimbursement conditions, the range of products available, prescription and renewal conditions, and issues of authorization for transport. These are crucial questions for patients and that is why they have their say.

The introduction of therapeutic cannabis in France, whether experimental or definitive, must be made for the benefit of patients and must therefore grasp the daily challenges that are theirs. This implies that policy makers are listening to patients otherwise this experimentation will be in vain. However, for medical cannabis patients who are currently forced to illegal, it is not easy to be heard in the context of criminalization and stigmatization of this use. It is therefore necessary to set up platforms to make their voice heard in the public debate and this is the point of the following initiative.

A call to patients

The association in question came into being in March 2019 in the context of the opening of the debate on medical cannabis. The group brings together health professionals, supporters and patients and aims to integrate them into the process of developing the French model of medical cannabis regulation that concerns them first and foremost. “If the evaluation of the Scientific Committee is aimed at the development of legislation, then it is crucial and urgent to include the voice of patients in this process,” says the association.

By bringing stakeholders together through its platform, the association will legitimize the voice of individual patients and offer them a channel of expression to influence the public debate. In addition, with the participation of other public actors, it aims to raise awareness and educate public opinion and decision-makers about the situation of patients. It proposes to act through influential actions, meetings with public decision-makers and communication campaigns, in particular via media coverage of the reality of patients who wish to publicly carry their fight.

On the German model of the German Patient Roundtable, the group proposes a participatory model in the form of round tables bringing together patients, health professionals, producers, politicians, regulators and committed citizens. This space of exchange will make it possible to elaborate and to propose collectively a model which is oriented towards the real needs of the patients. At the end of these meetings, the association will make recommendations to the regulators so that the patients are not the forgotten ones of the reform.

To carry out this common mission, the association calls on the patients and the associations that represent them: “Today we call those who are suffering and their loved ones; those who already use cannabis for medical purposes or who may find new hope in the drug; as well as representatives of patient associations, to meet for the first Round Table of Patients on Sunday, May 5, 2019, at the Mairie du 2ème arrondissement of Paris, at 8 Rue de la Banque”.

If you are a patient or patient association representative, and would like to participate in this first Roundtable for Patients on May 5th, please send an email to fiona.colombbarets@gmail.com and sara.velimirovic@sciencespo.fr.