The medical cannabis community in the UK and elsewhere is mourning the passing of tireless advocate Hannah Deacon.
Hannah was one of the founders of the Medcan Family Foundation, which works on behalf of families living with complex severe treatment resistant epilepsy to support their access to cannabis-based medications.
Hannah started the organisation following her own drawn-out battle to secure a medical cannabis prescription for her son Alfie who has an extremely rare form of epilepsy: PCDH19. The condition is characterized by early-onset seizures, cognitive and behavioral problems. Alfie’s condition significantly improved after he was administered a cannabis-based medication in the Netherlands, where it was legal.
Hannah played a pivotal role in the 2018 law change that allowed medical cannabis to be prescribed in the UK and Alfie Dingley was one of the first two patients to receive a permanent NHS cannabis licence.
A statement posted on Hannah’s website states:
“Hannah was remarkable: determined, tenacious, and fiercely compassionate. Her fight to find treatment for her son Alfie’s rare and severe epilepsy led to a breakthrough that changed his life and ultimately changed the law. She went on to transform the lives of thousands of patients and families, never stopping in her work to push for better access, better care, and a better understanding of medical cannabis.”
It was only on March 27 this year it was revealed Hannah had been recently diagnosed with cancer, and that she would be stepping down from her roles with the Medcan Family Foundation and Maple Tree Consultants, which supports businesses navigating the complexities of entering the UK’s medical cannabis market.
Hannah Deacon died on Tuesday 6 May surrounded by loved ones, after what was described as “a short and brutal illness”. Hannah was just 45 years old.
“Hannah was our brave, beautiful partner, daughter, sister, and friend. She made us laugh, made us think, and made us feel stronger just by being there. All of us are better for knowing her. We only wish we could have had more time.”
Despite Hannah Deacon’s efforts, regulatory red tape, a lack of funding, knowledge and training remain barriers to treatment and many UK families are still forced to access medicinal cannabis for their children illegally.
