France: a collective calls on patients to add their voices to the public debate on medical cannabis

The creation by the ANSM (French National Agency for Medicines and Health Products Safety) of a Scientific Committee (CSST) The debate over medical cannabis in France has raised hopes for regulation. Many patients are already using cannabis for treatment and, in the absence of legal and regulated access, are self-medicating by obtaining it on the black market despite the risks involved. Yet these risks are still largely absent from the emerging debate. However, it is these patients who are most directly affected. To make their voices heard, an association has been created that aims to collect their testimonies and represent them before policymakers and regulators.

A Medical Cannabis Pilot Program in France

Medical cannabis is already partially legal in France but only in the form of pharmaceutical products, access to which is extremely limited and restricted to a narrow list of medical conditions. The use of the plant itself remains prohibited. Last September, against the backdrop of a growing trend toward the legalization of medical cannabis worldwide, The ANSM announced the creation of the CSST to discuss the medical use of the cannabis plant.

In December 2018, The committee concluded the appropriateness of introducing medical cannabis in France and recommended that a pilot program be conducted nationwide. It must now decide on the regulatory framework for this pilot program. This includes issues of effective accessibility, the conditions for expanding the list of eligible conditions, reimbursement criteria, the range of available products, prescription and renewal requirements, as well as transportation authorization issues. These are crucial issues for patients, which is why they have a say in the matter.

The introduction of medical cannabis in France—whether on an experimental or permanent basis—must be carried out for the benefit of patients and, to that end, must address the daily challenges they face. This requires policymakers to listen to patients; otherwise, this experiment will be in vain. However, for medical cannabis patients who are currently forced to use it illegally, it is not easy to make their voices heard in a context where such use is criminalized and stigmatized. It is therefore necessary to establish platforms to amplify their voices in the public debate, and this is the very purpose of the following initiative.

A Call to Patients

L’the association in question was launched in March 2019 in the context of the’Launch of the debate on medical cannabis. The coalition brings together healthcare professionals, advocates, and patients, and aims to involve patients in the process of developing the French regulatory framework for medical cannabis, which affects them most directly. «If the Scientific Committee’s assessment is intended to lead to changes in legislation, then it is crucial and urgent to include patients» voices in this process,” the association states.

By bringing stakeholders together through its platform, the association will help give individual patients a legitimate voice and provide them with a channel to express their views and influence public debate. Furthermore, with the participation of other public actors, it aims to raise awareness and educate the public and policymakers about patients’ situations. It plans to achieve this through advocacy efforts, meetings with public policymakers, and communication campaigns—particularly by publicizing the realities faced by patients who wish to publicly share their struggles.

Based on the German model of German Patient Roundtable, The collective proposes a participatory model in the form of roundtable discussions bringing together patients, healthcare professionals, manufacturers, politicians, regulators, and engaged citizens. This forum for discussion will enable participants to collectively develop and propose a model that is geared toward patients’ actual needs. Following these meetings, the association will issue recommendations to regulators to ensure that patients are not left behind in the reform.

To carry out this joint mission, the association is calling on patients and the organizations that represent them : «Today, we call on those who are suffering and their loved ones; those who already use cannabis for medical purposes or who might find new hope in it; as well as representatives of patient organizations, to come together for the first Patient Roundtable on Sunday, May 5, 2019, at the City Hall of Paris’s 2nd arrondissement, located at 8 Rue de la Banque.».

If you are a patient or a representative of a patient organization and would like to participate in this first Patient Roundtable on May 5, please send an email to [email protected] and [email protected].