Remember Alfie Dingley, the six-year-old boy from the UK who has a very rare form of epilepsy and suffers from multiple seizures on any given day? We had written about him in a previous blog post.
Well, there has been a great update. The Home Office is now considering a medical cannabis trial as potential treatment option for Alfie.
In fact, Nick Hurd, the policing minister, has met Alfie and his family to discuss possible treatments for the boy.
It can be recalled that the Home Office had earlier denied the request by Alfie’s parent to grant the boy a special license to use cannabis oil to manage his condition. The Home Office had stated that cannabis oil “cannot be supplied, prescribed, or administered” to Alfie and to the public in general.
This is because cannabis oil is still illegal in the UK.
“We hope this is the beginning of the end of our lengthy fight to save our son’s life.” – Hannah Deacon, Alfie Dingley’s mother
Alfie has PCDH19, a rare and severe type of epilepsy that’s caused by genetic mutation and characterized by catastrophic clusters of seizures that hard to control. The condition is also found to be unresponsive to conventional anti-epilepsy drugs. Alfie is the only one in the UK known to have this illness.
Alfie and his parents had already travelled to the Netherlands last year to try a cannabis-based treatment under a pediatric neurologist. Alfie’s parents attest that the boy’s seizure attacks had dramatically lessened after he was given whole plant cannabis oil, which contains both CBD and THC.
Alfie’s mother, Hannah Deacon, explained that unlike pure CBD oil, the whole plant cannabis oil also provides Alfie the other cannabinoids he needs to get the anti-seizure effect. Other cannabinoids, including THC, are essential in hard-to-control forms of epilepsy.
Ms. Deacon also said that before travelling abroad, Alfie had tried hemp oil products from cannabis strains called Charlotte’s Web and Hayleighs Hope, which are known to be effective in treating certain forms of epilepsy, including Dravet syndrome. Unfortunately, she said that these strains do not work on Alfie.
The family had raised money to be able to take Alfie to the Netherlands for cannabis treatment. However, they were forced to return home to Kenilworth, Warwickshire, after a few months because of a lack of medical insurance there and because they were running out of funds.
While they continued with their fundraising efforts to be able to go back to the Netherlands, the Dingleys also campaigned for Alfie to be granted a license by the government to use cannabis at home.
Home Office changes tune
With the outpouring of support from people, members of the country’s parliamentary group on drug policy reform directed the Home Office to assist Alfie and his family in their plight and in their efforts to lessen his seizures as well as his hospital visits.
The Home Office said that minsters are currently exploring options for treating Alfie. One option is a medical trial, which will be led by the boy’s medical team.
The Home Office, however, made it very clear that no final decisions have been made on the matter.
According to a spokesman for the Home Office, the UK government deeply sympathizes with Alfie and his family for the difficult and rare situation they are faced with. He said that the policing minister wants to explore every treatment option accessible for him.
The spokesman added that “any proposal for treatment must be led by a senior clinician employing rigorous and sufficient evidence.”
Ms. Deacon said they are hoping that this move by the Home Office “is the beginning of the end” of their long fight to save Alfie’s life.
Featured image is from Alfie’s Hope FB page.