Three years ago, following a campaign on behalf of children with severe forms of epilepsy, UK law was changed to allow for the prescription of cannabis-based medicines.
The change was introduced by then home secretary, Sajid Javid, who had “been moved by heart-breaking cases involving sick children”. He claimed that the government had “delivered on [its] promise” to allow expert professionals to “prescribe these products where there is a real need”.
This change in the law has helped dozens of children suffering from extreme conditions. They include my daughter, Jorja, who was born with a severe form of epilepsy which caused her to have more than 30 seizures a day. The medicine works by targeting the human body’s endocannabinoid system and bonds with receptors in the nervous system and the brain. Its impact has been nothing short of astonishing and enabled Jorja to be almost seizure free.
But the law that was rushed through in 2018 has only partially fixed the issue for these children. Regrettably, just three children in the UK have secured NHS prescriptions in that period, meaning the remaining prescriptions – costing thousands of pounds per month – must be paid for by parents. Most parents are simply not in a position to foot the bill, with many going to extreme lengths, such as selling their home, to keep their child alive.
To make matters worse, because of the way that the guidance around prescribing medicinal cannabis was drafted by the government and the National Institute for Health and Care Excellence (NICE), very few clinicians have been willing to prescribe this treatment – and GPs that have tried to prescribe have been refused permission by the health authorities. Until now, there have been just two specialist consultants willing to prescribe this life changing treatment.
But now, that is at serious risk. A few weeks ago, the main specialist consultant, Dr Adelaida Martinez, who prescribes the treatment on a compassionate basis, retired and there is no one else willing to simply take over the prescriptions. That leaves a dozen children at risk of losing their treatment completely.
This is despite NICE guidance clearly stating that prescriptions of this nature could be taken over by GPs – but only if a specialist consultant is willing to prescribe in the first instance, and enter a shared care arrangement thereafter. For every other medication in the UK, licenced or unlicensed, GPs can simply take over responsibility for any prescription.
Both Dr Martinez and I have written to the health secretary and prime minister urging them to intervene on this critical issue. All we need is for GPs to be empowered to prescribe, as is normal clinical procedure.
The response Dr Martinez received from the Department of Health and Social Care simply failed to engage with the argument we had set out. Instead, it repeated the government’s position that only lengthy clinical trials of these unlicensed medicines could unlock wider access for children in need. My daughter and these children cannot wait several years for a decision on whether these treatments are acceptable.
A clinical decision has already been made for our children and the evidence is the condition of the children themselves – their medicine is working. Of course, more clinical trials are needed for widespread adoption by the NHS – no one disputes that – but that is a separate argument to this specific set of children who have been prescribed, and have urgent, unmet clinical need and will die without access.
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Last week, MPs met in the House of Commons to debate access to medical cannabis for epileptic patients. Despite the supportive voices of MPs from across the political spectrum – including a member of the Opposition front bench – the minister responsible refused to budge. So Jorja and the others affected remain without a valid prescription.
The government would have the public and other MPs believe that only licenced medications approved by the The Medicines and Healthcare products Regulatory Agency (MHRA) that have had RCT trials are funded in the UK by the NHS. This is simply not true. Over 200 medications, including some that Jorja relies on, are indeed funded by the NHS with MHRA approval.
The situation has become urgent. I ask the health secretary to listen to our pleas and to step in to enable Jorja – and the other children affected – to continue to receive this life saving treatment.
When Mr Javid changed the law three years ago, he said, “There is nothing harder than seeing your loved ones in pain.” Without her treatment, my daughter faces a return to the pain of the past. He has it in his hands to stop that from happening.
Robin Emerson has played a pivotal role in the change of legislation in the UK, with his daughter Jorja receiving the first prescription after the law was changed in 2018. He has gone on to hold positions in the leading cannabis companies and continues to develop his regulatory relationships to pave the way for clearer regulation for both physicians and patients and advance the clinical pathway for medical cannabis
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