A note from the publisher: Since the publication of this article, the FDA has approved a CBD-based prescription drug for two special types of epilepsy.
Alfie Dingley is only six years old, and yet his life is a daily struggle due to an intractable and rare form of epilepsy called PCDH19. It is so unique that he is thought to be only one of seven people in the world suffering from the disease. [1]
According to his mother, Hannah Deacon, Alfie's situation deteriorated so badly in recent years that he was experiencing from 150 seizures a month, sometimes up to 30 seizures in one day. In one year alone, they estimated he had over 3000 episodes, which landed him in hospital 48 times. As his condition continues to worsen, his mother is going to extraordinary lengths to seek out Alfie’s right to access of CBD oil for seizures.
Beyond simply sourcing CBD oil for children like her son, she is, more importantly, fighting for legal access in the UK. In her words, “We have to do everything we can for our child. We have to keep the fight going. At the center of this is a six-year-old boy who, without his medicine, is extremely unwell.” [2][3][4]
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How CBD Oil for Children Has Changed Alfie’s Life
Living in the UK has been difficult for the family, as the only viable conventional treatment option for Alfie’s form of epilepsy is steroids, in unimaginably high doses. Potential side effects include excessive weight gain, psychosis, and even premature death. As a mother, Hannah is not standing for this, because she has seen, first hand, what CBD oil for seizures can do.
As Alfie’s condition deteriorated, his family was desperate to find a safe treatment for his disease. They made the tough decision to move the entire family from their small town in Kenilworth, UK, to Amsterdam for legal access to CBD oil for seizures. It was in Holland that Alfie’s parents finally got a pediatrician prescription and found relief for their six-year-old boy. Through treatment with CBD oil, they saw their son’s life transformed.
Alfie went from approximately 30 seizures a month to less than one in 24 days. His medical team was able to drastically reduce the levels of steroids required, and subsequently, reduce the high risk of severe side effects. During a BBC interview in February 2018, Hannah expressed what it was like to see Alfie suddenly interacting, socializing and actively learning again. Before, with his small body shot full of steroids, he had been a very different and aggressive child.
Unfortunately, Alfie and his family were unable to stay in Holland. Hannah was able to bring back the non-THC component of cannabis, CBD oil for seizures, to continue Alfie’s treatment, but its legal status in the UK falls in a grey zone. Yet, this hasn't stopped Hannah on her mission to save her son. Knowing what she now knows about using CBD oil for children with rare forms of epilepsy, she is fighting tooth and nail to get the UK parliament to approve continued treatment for her son.
The Legal Status of Cannabis in the UK
Under current UK legislation, it is difficult to gain access to non-THC based medicinal cannabinoids like CBD oil for personal use. It is even more difficult, if not impossible, to get approval to use products with THC. According to Release, the national center of expertise on drugs and law in the UK, the rules around imported CBD products, which are the only accessible products in the UK, are convoluted. The charity advises, “that the legal position is simply not that clear [...] it is difficult to provide definitive advice on what people can do regarding CBD products for medicinal use.” [5]
The relatively new regulation passed in 2016 does not categorize CBD as a medicinal product, although some products containing CBD do fall under that category. The legislation from 2016 seems to suggest that imported CBD products are legal as long as there are no measurable levels of THC. However, without standard systems for testing, users take legal risks if they decide to import CBD for personal use. Clarity regarding UK legislation on CBD oil for seizures is sorely needed.
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Hannah and her family are fighting a complicated bureaucratic system, and all levels of government to access legal CBD oil for seizures. She remains motivated, as she has seen the difference it made in her own child’s life, and Alfie's story has convinced 370,000 other UK citizens to sign a petition for the cause.[6]
In the United Kingdom, It’s Time for Change
Alfie's fight is gaining traction, and after a slew of interviews across national media, Hannah's petition was finally presented to parliament in March 2018 after a meeting with the country’s Prime Minister, Theresa May. Despite the fact that the government has previously turned down the family’s applications for legal exemption, the Prime Minister has stated after the meeting that government will do everything in its power to help Alfie get legal access to CBD oil for children.
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Alfie’s story is one of the most compelling reasons to push for legal access to CBD oil everywhere. Beyond the members of parliament taking up Alfie’s cause, celebrities are championing the besieged family’s cause. Sir Patrick Stewart, for instance, has supported Alfie’s rights to seek CBD oil for seizure control. Stewart himself has witnessed the healing power of the cannabis plant, as he personally uses cannabis in California to treat painful arthritis. Without it, he too needs to rely on steroids, something which he is loath to do. Stewart stated, “How could one not support Alfie, hearing what his life has been and the benefits given to him by being able to use medical marijuana. There has never been a stronger case for the legalization of medical marijuana.” Hopefully, this will happen sooner rather than later - for the sake of all children in situations similar to Alfie’s. [7]
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Sources:
[1] https://www.vice.com/en_uk/article/wj4pvx/its-high-time-to-legalise-medicinal-cannabis-in-the-uk
[2] http://www.bbc.com/news/health-43459220
[3] https://www.youtube.com/watch?v=Xqiy4sSLJYo
[4] https://www.express.co.uk/news/uk/939834/Alfie-Dingley-PCDH19-epilepsy-Theresa-May-pledges-support-medical-cannabis
[5] https://www.release.org.uk/blog/cannabis-confusion-legality-medicinal-cbd-uk-cannabidiol
[6] https://www.express.co.uk/news/uk/939834/Alfie-Dingley-PCDH19-epilepsy-Theresa-May-pledges-support-medical-cannabis
[7] https://www.telegraph.co.uk/news/2018/03/20/sir-patrick-stewart-urges-cannabis-treatment-boy-epilepsy/
