A Closer Look at the Families Struggling to Cope with the Huge Financial and Personal Burden of Accessing Medical Cannabis to Treat Childhood Epilepsy
By Danielle Johnson, Clinical Scientist in Neurophysiology and member of the Medical Cannabis Working Group at Drug Science
In recent years, the case for medical cannabis as a treatment for drug-resistant epilepsy has gained significant support, largely as a result of high-profile cases such as that of Charlotte Figi in the US, and Alfie Dingley, who’s story led the way in the legalisation of medical cannabis in the UK. Although November 2018 saw a down-scheduling of medical cannabis and subsequent allowance of specialist clinicians to prescribe medical cannabis on an individual case-by-case basis, substantial barriers still remain in gaining access to the drug. For the families that have overcome this first hurdle, they are often faced with the challenge of having to meet the excessive costs associated with securing this medicine privately. This can take a huge toll on those families using cannabis-based medical products (CBMPs) to treat their children with drug-resistant epilepsy, both personally and financially, as they must balance the demands of caring for a child with complex needs with the never-ending worry of being able to supply this much-needed medication.
A recent study by Drug Science focused on ten patients using Bedrolite or Bedica for paediatric intractable epilepsies and concluded:
“Medical cannabis improved the children’s quality of life, mood and behaviour. Most importantly, we found across the group an average 97% decrease in the numbers of monthly seizures. These are amongst some of the largest reductions in seizure reported due to medicine in childhood epilepsy, greatly surpassing the effectiveness of mainline licenced epileptic medication.”
This clear therapeutic potential of medical cannabis was associated with an extortionate average cost of £1816.20 per month, meaning that, although technically the treatment may now be accessible to children who meet the criteria, it is still not a feasible option for all. Many families are facing huge financial burdens when it comes to accessing CBMPs legally; with the risks of inconsistent or inadequate treatment overwhelming and even life-threatening (as we have seen with recent scares with regard to accessing EU-sourced products in the light of Brexit), the pressure weighs heavy on these families and we can no longer turn a blind eye to the wider impact of the problem.
Gino’s Journey
To gain a better insight into the personal stories of families in this difficult position, I spoke to Charlene Londra, Mum of five-year-old Gino, who has complex drug-resistant epilepsy associated with West Syndrome and 1p36 Deletion Syndrome. The family started using CBMPs in 2020 after exhausting every other option and discussed with me the huge impact the medication has had on Gino’s seizure burden, interaction and cognition, as well as their persistent struggle to meet the cost demands associated with his treatment.
Gino had his first seizure at only two weeks old and was started on anti-epileptic drugs (AEDs) immediately. At first, this appeared to control his seizures and he was gradually weaned off. Although he spent four months with relatively controlled seizures, the family later began to notice clusters of spasms. Following the appearance of these characteristic events, the family faced a long journey to identify the right medications for him. Classic treatment options for infantile spasms weren’t initially offered as he didn’t neatly fit into the box of this diagnosis and the clinical team had difficulties in identifying a medication Gino would respond to. Within six months, Gino had lost all the skills he had learnt prior and was eventually prescribed a course of steroid treatment – this reduced his seizures and allowed him to regain some of his skills, but he has never been seizure free since.
The Londra family followed all recommendations given by the Doctors; he had tried almost every AED on offer, had a Vagus Nerve Stimulator (VNS) fitted and trialled the ketogenic diet. Moreover, the myriad of medications he was on were associated with significant side effects, Mum recalls that he was always very sleepy and not at all interactive; however, they persevered with the medication as they considered it his only option in keeping his seizures at bay. At this point, doctors told the family there was nothing more they could do to help Gino’s seizures.
Driven by worries of Gino’s quality of life, in 2019, Charlene reached out to some families with similar conditions on social media, including those who had tried medical cannabis as a treatment for their children with drug-resistant epilepsy also. Around this time, Gino began experiencing apnoeic seizures where he would stop breathing for a brief period – the need to find a treatment for him became more pressing.
At first, Charlene describes that she was very wary of exploring medical cannabis and concerned about the questions she would be met with both in the medical and local community. After seeing a private specialist doctor, Gino was given a prescription for Bedrolite. Charlene reports the sense of reassurance subsequent to that appointment; she finally felt supported in her decision. The circle of other families she met through groups such as MedCan Support offered additional and invaluable guidance and she began various fundraisers with the aim of securing the next few months of cost associated with the treatment.
According to Gino’s seizure charts (which Mum keeps religiously), Gino went from experiencing at maximum 600-800 seizures per month to 100 seizures per month following the introduction of medical cannabis. In addition to this 60-80% decrease in seizure frequency, Gino’s events began to appear solely as singular head drops, which were clearly less life-impacting than his previous reported seizure types. Mum also describes that he became more interactive and less sleepy; nearly a year since they introduced CBMPs to Gino’s treatment regime, Charlene tells me that he now listens better, has started crawling and loves dancing.
After recently switching to BOD Australia (as a result of seeking a slightly less expensive option, pre-empting access limitations due to Brexit and following recommendations that a slightly higher THC ratio may be better for some epilepsies), the family is paying out over £700 per month to cover Gino’s medications and describe how this will only continue to increase as he grows, as the cost is based on the dosage required.
Charlene describes the impact of the “constant worry about whether we’ll be able to keep up the costs of treatment each month”. That, on top of all the additional costs of raising a child with complex needs, means the family have to fundraise to cover costs:
“It never stops – I put him to bed and start making jewellery to sell as part of our fundraising campaign…we constantly have to think of new ways to find the money to continue affording his treatment. Without this and the kind support of our community, there’s no way we would ever be able to get what Gino needs.”
At first, Charlene was shy to talk about using medical cannabis for fear of judgement and in case it didn’t really work – but “there’s no way we can deny the positive effect it’s had on him”. She comments that, at first, he seemed more irritable and started to become upset after his seizures, which they associated with him becoming more aware of his sensations and ability to non-verbally communicate his emotions. “I feel like he’s got some life to him now, before he was just drugged up to his eyeballs…now he’s not so numb” she says.
Although Gino’s doctors agree the CBMPs are “clearly making a difference”, they still appear wary to share their opinions on medical cannabis and it is clear that we still have some way to go in breaking down the barriers associated with this drug – whether that’s lack of education or the general scepticism and moral disproval which often accompanies the use of cannabis in a clinical setting. Gino is awaiting an EEG and the family hopes that this will give some empirical evidence of the improvements they have witnessed.
The family also feel more confident in the natural aspect of CBMPs, stating “we’ve even tried his CBMPs – which I would never do for his other AEDs – and that just shows how wary we are about the potentially harmful and toxic effects of that medicine compared to cannabis”. In the same breath, the family recognise that medical cannabis is not a cure; Gino remains on multiple AEDs including Vigabatrin, Rufinamide and Keppra, but the addition of medical cannabis has had an undeniable positive impact on his seizures and his life overall, it has also kept him stable and without hospital admission for now.
Charlene finally comments “I know it’s not a miracle drug, but it gave us some hope when we thought we’d run out of options”…and hope for a better quality of life seems to be the main driving force in these families who are doing whatever they can to gain access to medical cannabis. On top of the substantial barriers which remain in obtaining these medications which remain unlicensed in the UK, we are subjecting parents to the ongoing burden of raising funds to treat their children, further impacting parents who may be already struggling to cope with the demands of having a child with complex needs and are themselves at risk of subsequent mental health difficulties.
We must question why, in 2021 and in the home nation of the NHS, we are continuing to deny these drugs to so many patients who may benefit so hugely from them and further, why we are placing unnecessary personal and financial burden on these families who already face significant difficulties. Although extremely challenging, the Londra family are able to meet the costs of Gino’s treatment through their fundraising efforts and community support – but we must also consider the families who cannot even explore medical cannabis as a treatment for their children due to its current prohibitive cost.
As much as large scale “gold-standard” scientific studies into the efficacy of medical cannabis may be lacking in some cases, we surely cannot ignore the impact of the individual stories and real-world evidence on the remarkable effects of this botanical medicine. These have been imperative in changing legislation to permit access to medical cannabis in the UK, and will also support our drive for safe, legal, affordable and inclusive access to CBMPs through NHS prescription, greatly aiding families such as these who currently bear great financial and personal burdens simply to care for their children.
What’s next?
Drug Science is soon to expand its medical cannabis study Project Twenty21 to include childhood epilepsy. We’re currently looking to train more specialist paediatric neurologists in prescribing medical cannabis and join the project. If Gino Londra were to be prescribed under Twenty21, then it may be possible to bring his costs down.
Clinicians can either join the project under one of the existing clinics on our directory or as a clinician operating completely independently. Please email prescribers@drugscience.org.uk if you wish to find out more, and also share this information with any clinician colleagues you know who might be interested.