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Families 4 Access at Cannabis Europa, Paris 2019

February 15, 2019

Families 4 Access is extending its patient advocacy network. With plans in the pipeline to join forces with the United Patients Alliance and strengthen ties with various other families and carers who are paving their way for access to Cannabis Based Medical Products (CBMP’s).

Pierre-Yves Galléty, Basia Ziniewicz and Sebastien Cotte

Pierre-Yves Galléty, Basia Ziniewicz and Sebastien Cotte

Last week, Patient Advocacy and External Relations Lead for Families 4 Access and the Centre for Medicinal Cannabis, Basia Zieniewicz head to Paris for Cannabis Europa to meet with other campaign groups such as Flowering Hope, comprised of parents such as Sebastien Cotte. Father to 8 year old Jagger who suffers with a rare terminal genetic and neurological disorder, Leigh's disease. Sebastien has been administering CBMP’s to his son, discovering that it is the only form of treatment keeping his son alive and extending his life expectancy by 4 years to date. “For kids that have this disease, if they are diagnosed before the age of 2, 95% of them do not make it past the age of 4."

Originally from France, Sebastien, who has a degree in International Business and is also an ambassador for the United Mitochondrial Disease foundation, had moved to Georgia, USA. Like familiar stories to medical refugees from the UK, Mr. Cotte moved from Georgia to Colorado in 2014 so his son could be treated with medicinal cannabis when it was illegal to use cannabis for medicinal purposes in Georgia.

"Right away we saw great improvement," Mr. Cotte said. "He started smiling again. His seizures went down, his pain went down and we were able to take him off of some of his very strong medication like morphine and oxycontin."

Sebastien, along with many parents and carers, is a part of a group of patients, families and activists whom are now appealing a decision in a lawsuit against the Justice Department in a push to get CBMP’s declassified from being a Schedule 1 drug, listed alongside heroin, LSD and ecstasy.

The government is arguing that courts have already heard similar cases and rejected them. Depending on the judge's decision, the group could get a new trial or end up petitioning to the Supreme Court.

"We just want a chance to prove and to show that cannabis has medicinal properties and cannabis can help patients and kids like Jagger," Mr. Cotte said.

Sebastien and his son have returned to Georgia since they left the state in 2014. They have successfully advocated for legalizing medicinal cannabis there in 2015. But they still face legal challenges.

"In Georgia, my son has a right to have possession of cannabis oil, but be cannot take it out of the state.” Jagger could not travel with his father across state lines. Should they attempt to do so and be stopped carrying Jagger’s CBMP’s, Sebastien could end up in jail and his son could be taken by child services.

Cannabis Europa, the first event of it’s kind in France, had offered a platform for Sebastien to make his story known. Speaking alongside French policy and medical panelists, Mr. Cotte had delivered an inspiring account of his journey, evoking tears and a heated debate in front of a live audience of supporting international campaign groups and NGO’s.


Speaking to Sebastien post his emotionally charged discussion, Mr. Cotte told Families 4 Access that he was proud to share his story in Paris, where the climate towards CBMP’s is a few steps behind the UK. “I hope my journey will inspire the policy makers to rethink their their stance on CBMP’s. All you need is to reach that one person who can change things, and then you must support them while they fight for your cause. They need to hear our stories. Voice your stories.”

Basia Zieniewicz, Families 4 Access