Sophia Gibson: A Young Girl Trapped By Bureaucracy

Patient stories help us understand the real world impact of cannabis on the people who are improving their health and wellness on a day to day basis.

Update 2/8/2021:

Two years ago, Sophia Gibson became the first person in the U.K. granted a long-term license to use medical marijuana. Unfortunately, the U.K. Department of Health has confirmed that her specific cannabis medicine, Bedrocan, is no longer available.

The reason? Since January 1, prescriptions issued in the U.K. will no longer be lawfully dispensed by an EU member state. This is just one of many examples of how the situation with Brexit has caused problems for the citizens it was supposed to benefit.

Sophia has not been hospitalized for a seizure since July 2018, but without the medication, the family is afraid their regular ambulance rides and hospital visits may start up again.

In a statement, the Belfast Health Trust has said that they are “seeking alternative medication in conjunction with expert advisors and in discussion with Sophia’s family.”

One option may lie in Epidiolex, a CBD based medication manufactured by G.W. Pharmaceuticals, which has since become approved by the U.S. Food and Drug Administration to treat Dravet Syndrome and other severe forms of epilepsy.

Update in 2018:

Sophia Gibson condition is stable, and she has now been granted a long-term licence to take medical cannabis! She is the first person in the UK to be given this licence, after her case was reviewed by the new expert medical panel. This panel now has the power to grant these licences to UK citizens who are in dire need. This could mark a turning point in the UK’s policy towards medical cannabis.

Original Article on Sophia Gibson [2018]:

In what feels like history repeating itself, we have another young child in hospital fighting for her life after falling into a coma induced by an hour-long seizure. Sophia Gibson, a 7 years-old from Newtonards, County Downs, suffers from Dravet syndrome.

She is currently being treated at the intensive care unit at the Royal Victoria Hospital in Northern Ireland. Sophia is currently on life support and in critical condition.

Intensive care unit; ICU; hospital; emergency care; critical care.
An ICU. By Norbert Kaiser. Picture source 

Sophia was successfully being treated for her condition with cannabinoid-based medications from the Netherlands. Her parents, Danielle and Darren, applied for a licence to the Home Office in order to legally obtain and use cannabis oil to treat their child’s epilepsy, but the licence does not seem to be forthcoming.

After all, Sophia would likely not be in hospital at the moment if she had access to her medication.

Download Free Guide to Pediatrics and Medical Marijuana + Bonus Dosing Guide

First in the UK to Be Legally Allowed Medical Marijuana

So, why is the UK government sitting on its hands so much surrounding this issue? Why so much red tape and bureaucracy surrounding a decision that should be obvious? (I.e. granting those who need a licence as soon as possible and allowing doctors to prescribe medical cannabis.)

To make matters worse, even if the right thing is done and Sophia gets the treatment she requires, we do not know what sort of long-term physical and mental damage undergoing such a seizure could do.

The fact is, there are many patients suffering from various different conditions, who need safe, well-tested cannabinoid-based medications as quickly as possible. Not giving patients the treatment they require could be putting them in potentially life-threatening positions. They are running out of time and, every second the UK government keeps access to cannabis-based medications restricted is another second that could cost patients their well-being or even lives.

Constantly having to travel overseas is no solution, as this is unaffordable for most. Plus, it is more than a little crass to tell a sick person who might have difficulty getting out of the house to go to another country to get treated. The only reasonable and honest solution to this is for the UK to set up a medical cannabis program that allows qualifying patients access to the medication they need.

The UK is Growing Medical Marijuana but Not Providing It

The ultimate irony in this is that British Sugar grows cannabis on British soil in Norfolk and supply the plant to countries in Europe for the medical cannabis programs they have established. To season this irony a little more, British Sugar also supplies cannabis to GW Pharmaceuticals.

Their company is currently undergoing Phase III trials for Epidiolex, a CBD-based medication designed specifically for epilepsy (specifically Dravet and Lennox-Gastaut syndrome). So the question remains: how can the UK government supply a product that helps the citizens of other countries, yet deny that product for their own citizens?

A field of hemp growing in Norfolk, UK.

Fortunately, there are people in Parliament who see that the way things stand at the moment is not suitable for the needs of patients. MP Tonia Antoniazzi, alongside Vincent Cable, Paul Flynn, Hannah Bardell, Ben Lake and Christine Jardine, have tabled Early day motion 1457, which concerns medical cannabis licensing and the establishment of an All Party Parliamentary Group on Medicinal Cannabis.

The motion states:

“That this House welcomes the establishment of a new All Party Parliamentary Group on Medicinal Cannabis on 10 July 2018; notes with concern the initial failure to licence medicinal cannabis products needed by patients to treat epilepsy and other conditions, as recently demonstrated by the cases of six year old Alfie Dingley and 12 year old Billy Caldwell; further notes with concern that Alfie’s parents had to move to the Netherlands to secure the cannabis capsule medicine and that Billy’s parents had their cannabis capsule medicine, brought in from Canada, confiscated at Belfast airport; notes that the UK lags far behind the 39 countries and the 32 US states that now permit medicinal cannabis use; notes that studies in the US demonstrate a 15 per cent saving on prescription medicines in states with legalised cannabis; acknowledges that the Home Office has now conceded to look at this issue more closely, and set up a two-step review headed by Prof Dame Sally Davies; calls on the Department of Health and Social Care to estimate the savings to the NHS drugs bill from permitting the use of medicinal cannabis; further calls on the Government to speed up the review process for licensing medicinal cannabis and simplify the guidelines around applying for a licence; and calls on the Government to put in place medicinal cannabis legislation fit for the 21st Century.”

Keep up to date with ongoing medical cannabis legislation and access with Leafwell.

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Written by
Dipak Hemraj
Dipak Hemraj

Dipak Hemraj is a published author, grower, product maker, and Leafwell’s resident cannabis expert. From botany & horticulture to culture & economics, he wishes to help educate the public on why cannabis is medicine (or a “pharmacy in a plant”) and how it can be used to treat a plethora of health problems. Dipak wants to unlock the power of the plant, and see if there are specific cannabinoid-terpene-flavonoid profiles suitable for different conditions.

Dr. Lewis Jassey

Dr. Lewis Jassey has been a pediatrician over the last 25 years, run a practice of 15,000 patients, and been on staff at five major hospitals for over two decades. Dr. Jassey has carved a niche for himself successfully working with patients on the spectrum, as well as patients with a variety of mental health issues. He lectures on a national level, with expertise in pharmacogenetics and pharmacology.

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