Campaigners are calling for the establishment of a new government office dedicated to medical cannabis as a first step towards making it available on the NHS.
Following the fourth anniversary of the legalisation of medical cannabis in the UK, campaigners are urging the government to consider an Office of Medicinal Cannabis to streamline the process of making cannabis medicines more widely available.
Matt Hughes, co-founder of Medcan Support, whose son Charlie is prescribed medical cannabis privately for treatment-resistant epilepsy, is one of those calling on the Prime Minister and the Health Secretary to intervene to reduce some of the barriers facing patients.
At the moment the legislation, licensing, health decisions, evidence assessment and product approval of cannabis, is spread across several government departments, including the Home Office, the Department for Health and Social Care, Ministry of Justice, the Medicines & Healthcare products Regulatory Agency (MHRA) and the Food Standards Agency.
Hughes is supporting recommendations from industry leaders, including the Cannabis Industry Council, Maple Tree Consultants and the Centre of Medicinal Cannabis, for the development of a central office within government to oversee medical cannabis and streamline the process needed to make licensed whole-plant medicines available on the NHS.
Charlie, five, has been prescribed whole-plant extract cannabis since May 2019 and is now predominantly seizure free.
However, in just a matter of weeks Charlie’s oil, Celixir20, will no longer be available in the UK, due to an update in MHRA regulations.
Earlier this year patients learned that imports of the product from its Israeli manufacturer, Bol Pharma, would no longer be permitted as its licence did not meet EU Good Manufacturing Practices (GMP) standards.
This deadline was extended until the end of 2022 in order to find a ‘permanent resolution’, but according to Hughes he is yet to find a suitable alternative for his son.
Hughes said: “After years of seeing Charlie suffer he is finally predominantly seizure free for the first time in his life, thanks to prescription cannabis. We have been able to enjoy doing things as a family, to watch him progress at school and engage with the world, at the same time his mum and I have started to feel like ourselves again.
“But not only is his medicine a huge financial burden during an impending cost-of-living crisis, we now face the prospect that the oil Charlie relies on to keep him well will no longer be available in the UK when MHRA guidance is changed next year. Our family is living in constant fear over what the future holds.”
A fundamentally flawed process
Despite this issue being raised in parliament, the government continues to claim that it is a clinical matter.
Meanwhile the Department of Health and Social Care have called for manufacturers to come forward and push through NIHR-funded clinical trials of cannabis based medicines with an aim for NHS access.
Hughes has described this approach as ‘fundamentally flawed’ and ‘hindering progress’, as the current supply chain is ‘inadequate’.
It’s estimated that over 20,000 patients in the UK are privately prescribed cannabis, yet the country currently has no domestic supply of whole plant medicines. Instead, these unlicensed medicines are imported from abroad from countries such as Canada, Israel and Australia.
A number of high-THC licences are believed to have been issued to companies in the UK, but so far only these licences have only been granted for research purposes. Companies will not be permitted to carry out the much-needed clinical trials until they have commercial licences.
Industry leaders have highlighted that this is a slow and expensive process, with little-to-no guidance for those organisations entering the market.
Recommendations from the cannabis industry
A report published by Maple Tree Consultants earlier this year highlighted a number of key recommendations which should be implemented by the government, if the UK is to make the most of the commercial, industrial and health benefits of a medical cannabis industry.
These were underpinned by the launch of an ‘Office of Medicinal Cannabis’, as is seen in other jurisdictions, such as the Netherlands.
The report states: “It is no wonder that the medicinal cannabis sector in the UK is a mess. Presumably, the government, in changing the law, meant to allow access to cannabis as a medicine. If that was the case they have singularly failed to grasp the opportunity not only of helping people with chronic health conditions but of helping to establish a viable and dynamic new industry.
“Coordinating the medicinal cannabis agenda through a unified Office for Medicinal Cannabis will help to progress this agenda.”
These calls were echoed in the Hodges Review, which was published by the Centre for Medicinal Cannabis earlier this year.
Professor Mike Barnes, chair of the Cannabis Industry Council, commented: “The Government at the moment has a number of different departments dealing with cannabis. It is very clear that the right hand often doesn’t know what the left hand is doing.
“We need better coordination and one way of achieving that is an office of medical cannabis which coordinates between the different departments especially the MHRA, Home Office and DHSC.
“That is key to improving the delivery of medicines in this sector, on behalf of the Cannabis Industry Council and Maple Tree Consultants, that should happen as soon as possible.”
A national scandal
In the meantime, patients and families continue to live in fear knowing they face losing access to a potentially life-saving medication.
“The fact that four years on we are still no further forward in accessing prescription cannabis on the NHS is a national scandal and a cruel one at that,” said Hughes.
“Families of children with refractory drug-resistant epilepsy had their hopes raised in November 2018, believing that they too would be able to get cannabis prescribed and funded on the NHS just like Alfie Dingley. But they have faced delay, obstruction, and outright refusal by the doctors to prescribe.”
He continued: “I am personally calling on the Prime Minister and the Health Secretary to intervene to address and work towards removing the many remaining barriers to accessing NHS prescription cannabis in the UK.
“The logical first step would be the development of a central government office for medical cannabis to help streamline the process for companies applying for commercial licences to grow high-THC cannabis.
“We need the Home Office and the DHSC to work together to do what is right for these children and families. How much longer do we have to live in fear?”
A government which doesn’t care
Hannah Deacon, co-founder of Medcan Support, who worked on the Maple Tree review, has also expressed her frustration with the lack of progress in the UK over the last four years.
Her son Alfie Dingley, has now been seizure free for two and a half years, as one of the three children to have an NHS prescription for whole-plant cannabis.
“The anniversary of the day the law changed should be something that is in the past, but sadly, every year we have to talk about it because still nothing has been done and no one is getting help,” she commented.
“We still only have three NHS prescriptions, while doctors are being pressured to withdraw their support and families are paying thousands of pounds a month for private access.”
Deacon continued: “Domestic issues such as ensuring that medical cannabis products are available on prescription to children like mine have just been forgotten. I’ve worked with some wonderful politicians over the years and we are grateful to them, but at the moment I feel like this country is run by people who do not care about people like us, or children like my son, and that makes me so angry.”
She added: “In the last four years, we could have done so much more to help people who are suffering.”
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