“They signed my death warrant”: Distraught patients worry about planned end to therapeutic cannabis experimentation

Sandra Rey : “C’est une déflagration”. Midi Libre – Michael Esdourrubailh

L’expérimentation a démarré le 25 mars 2021 en France. Midi Libre – SYLVIE CAMBON

Extended in extremis for six months, on December 18, the experiment of therapeutic cannabis should stop at the end of June, the time to organize a “withdrawal” for the 1850 patients suffering from serious pathologies included in the protocol. Pascal Douek, from Sète, Sandra Rey, teacher in Caissargues (Gard), Amélie Ribeiro-Dias, from Tarbes, experience it as a trauma.

Extended in extremis for six months on December 18, the experimental use of therapeutic cannabis has been granted a reprieve that does not provide relief to patients. In France, 1,850 people have been included in a highly regulated cannabis access protocol since March 25, 2021: under very specific conditions, they have access to a CBD/THC mixture, cannabidiol, now sold to the general public, combined with the active ingredient, which is still prohibited.

For a long time, the benefits felt made it possible to consider easier access to the drug, starting January 1, 2025. Political uncertainty, the reluctance of part of the medical profession, persistent taboos and easy shortcuts around everything related to psychotropic drugs have, for the moment, put an end to the hypothesis.

“They signed my death warrant”, is moved Sandra Rey, 53, teacher, from her home in Caissargues (Gard) where the Christmas decorations give a false image of happiness.

The pathologies that allow entry into the protocol

To enter the protocol, supervised by the National Agency for the Safety of Medicines (ANSM), with monitoring entrusted to candidate hospital teams, it is necessary to be at a therapeutic impasse in the management of pain in four pathologies: neuropathic pain, certain forms of drug-resistant epilepsy, certain stubborn symptoms in oncology, painful spasticity in multiple sclerosis or other pathologies of the central nervous system. Access is also open in palliative situations.

“Supporting the unbearable”

“I was 36 years old, we were on vacation with our two children in Saint-Jean-Pied-de-Port when I felt the first pains of the urinary tract infection type”, says Sandra Rey. For seventeen years, neuropathic pain associated with what turned out to be pudendal neuralgia has not left her.

In a myriad of drugs tested, only therapeutic cannabis helps her “to bear the unbearable”, says the Gardoise, who has not been able to work for two years. She is in her thirty-fourth month of treatment. “Cannabis is not a magic drug but it is essential in the few tools I have to bear pain that I rate at a level of 9 out of 10”.

Clinging to a cane that helps her move, sitting on a specially adapted seat that allows her to stand up straight without forcing her to lie down, her hands trembling, on the verge of tears, Sandra Rey says she is ready to consider euthanasia in Belgium, rather than “going back”: “It was my last hope in the hell I was living. I went back to a pain level of 9 out of 10, I want to scream.”

 

An interest recognized by health authorities

The General Directorate of Health issued, on November 20, 2023, an evaluation report on the experimentation of cannabis at the university. medical use. It reports a "positive assessment" from the end of the first year, "which tends to increase significantly. confirm the feasibility of the cannabis prescription and delivery circuit”.

On the effectiveness of the treatment, the report notes, “in all indications of the experiment, a statistically significant and lasting improvement in pain thanks to medical cannabis”. Pathology by pathology, the interest is “obvious”: “For neuropathic pain in particular, “79% of patients reported severe and unbearable pain” à inclusion in the protocol, they “are now only 29% to rate their pain as strong or unbearable, in favor of a pain that they describe as moderate to weak” from 3 months and up to “12 months of follow-up”, says the General Directorate of Health.

"In multiple sclerosis, there is a significant improvement in painful spasticity as well as a decrease in the number of spasms and stiffness", she adds. "In epilepsy, the scores of the various efficacy scales show a significant decrease in the frequency of attacks”, in oncology, cannabis has "a positive effect beyond the treatment of pain", and the effect is also described as "positive" in palliative care.

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Intended to verify the possibility of setting up a supply circuit in France for patients, it also raises difficulties: “The prescription relay in community medicine remains poorly developed and concerns 10% of patients”, the report points out.

But the evaluation concludes that “60~em>”the feasibility of the prescription and delivery circuit of medical cannabis, both in securing the various stages and in its practical implementation.

The wild withdrawal she has been imposing on herself for several weeks, with doses of painkillers that do not calm her, even “Oxycodone, twice as powerful as morphine, which has caused 500,000 deaths in the United States”, has already exhausted her.

“We have six months to fight”

“I am very worried, and very angry”, adds Pascal Douek, who had to give up his work as a doctor, the development of multiple sclerosis now forces him to move around in a wheelchair.

In 2018, Pascal Douek “was part of the first strategic committee” set up by the Minister of Health Agnès Buzyn, to decide “on the relevance of opening an experiment on medical cannabis”. With “a very heavy disability and suffering”, the cannabis was his “last hope”, “other treatments don't work anymore”.

Cannabis brought him a “small improvement”, and “it's already very significant” : “It's easier, gentler with cannabis, I don't dare imagine that I'll go back”, warns the Sète native.

Eric Viel, head of the pain assessment and treatment center at Nîmes University Hospital: “It was about time”

“It “was about time” : pioneer of the use of therapeutic cannabis at Nîmes University Hospital, since 2017, Professor Eric Viel believes that the experimentation must stop, while around thirty patients are still in the protocol, ’ the hospital. Not because he doesn't believe in it. the interest of medical cannabis: "If the indication is well placed, çit works".But he notes that the enthusiasm is not shared “by community pharmacies, nor by the majority of the medical profession”, while they are supposed to be part of the circuit.

“There will be a movement so that patients who see the effectiveness of the treatment can continue to benefit from it, çit will be played out in January", estimates the doctor.

In Tarbes, in the west of Occitanie, Amélie Ribeiro-Dias, 29, suffering from a rare disease, has also changed her life since she entered the therapeutic cannabis experimentation protocol in October 2021: “Before, I cried at the thought of having to wash my hair, my whole daily life had become an ordeal, with Tramadol, Lyrica, Lamaline at maximum doses, which improved my situation by 20% to 30%. I cried every night. Now, it's 80%, I'm alive again, and I've found a life on all levels, I can go out, work… I can't imagine my life without therapeutic cannabis, it would be going back to absolute hell”, details the young woman, who became a medical secretary after a career change.

Pascal Douek “doesn't do withdrawal”, he has “want to believe in it until the end”: “We started to get worried when we saw that there was no mention of medical cannabis in the PLFSS. There will be another one. It is also a political subject, and today, we don't have many interlocutors. We wrote to the Prime Minister, we are waiting for the Minister of Health… we have six months to fight.”

Mado Gilanton chairs the Apaiser France association, which brings together patients suffering from a rare disease, Syringomyelia & Chiari. DR

Mado Gilanton, president of Apaiser, a patient association: “We're not going to give up”

Mado Gilanton is the president of Apaiser, an “Association to Help, Inform, Support Studies and Research for Syringomyelia and Chiari”, a rare disease whose symptoms are “similar to multiple sclerosis”. “We are the association that, in France, is promoting the issue of access to medical cannabis”, she recalls.

How do you react to the decision to extend the medical cannabis experiment… to give patients time to wean themselves off it?

I was present at the last CTE, the temporary scientific committee set up to monitor the experiment. All the doctors testified to the dismay of their patients, who had found a solution to their problem, even if it doesn't work for everyone.

Since March, already, date at which was initially supposed to stop the experiment, it is no longer possible to enter the protocol, the palliative care services call for help.

This outcome was envisaged?

The use of medical cannabis was to become common law on January 1, 2025. Emmanuel Macron said he was in favor of it, and so was Marine La Pen. We had two major supporters, Olivier Véran, then Aurélien Rousseau, who were very much in favor of its use. But when Aurélien Rousseau resigned, personal opinions prevailed, and the ministers took their information from Mildeca, the Interministerial Mission to Combat Drugs and Addictive Behavior. One in two users is over 50, we know the damage cannabis does to young people, we are not at all in this situation.

We have not seen any drift or increase in dosage. We have seen side effects in 20% of users, including digestive problems, drowsiness, two or three serious effects that required immediate cessation of medical cannabis. But we are far from the situation with Tramadol!

You remain hopeful for the future ?

Since September, I have been meeting many people in the health world, and everyone agrees: therapeutic cannabis is effective, and the French sector is ready. 91% of French people are in favor of its use. Everything is framed, there are only five indications while there are 25 in Australia, we have removed the use of flowers, which could have been problematic… Countries like Spain are building on the French experiment, and 23 European countries have legalized the use of medical cannabis.

The problem today is the lack of political courage, the Interior Ministry is dealing with health. It's a big waste. But we're not going to give up.

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