It’s been over one year since the UK government rescheduled CBMP’s (Cannabis Based Medicinal Products) due to the political pressure instigated by powerfully emotive media campaigns focused on two young children with epilepsy; Alfie Dingley and Billy Caldwell. The law change, on November 1st 2018, was met with praise from some, cynicism from others and most profoundly, relief from patients (and their parents) who believed they would finally gain legal access to the medicine they require to live happy, healthy lives. But as 2019 comes to a close, is prescribed medicinal cannabis on it’s way to heady heights… Or merely a pipe-dream for patients?
To give a little background…
At the time of the law change I had recently left prominent UK cannabis-patient advocacy group The United Patients Alliance, an organisation I nurtured from its inception in the community halls of Brighton and grew to a blossoming nationwide network comprised of patient support groups, an online hub of information and education and a notably successful advocacy platform that regularly featured in mainstream media and sent delegations of patients to Westminster to give testimony and speak directly to lawmakers.
The United Patients Alliance hosting our first Patients at Parliament Cannabis “Tea Party” with Labour MP Paul Flynn (RIP)
After the UPA, I spent a busy 6 months utilising the knowledge and contacts I had amassed through advocacy in order to make my way as a consultant in the burgeoning UK cannabis industry, with some modest success. In February 2019 I was hired by Grow Biotech, a small London-based start-up with big ambitions and a highly skilled team who were about to complete the first ever (legal) bulk import of cannabis into the UK…
So, more than a year on, what does medical cannabis in the UK actually look like?
To begin, patients and campaigners should be forgiven their disappointment. From their standpoint, it must feel as though little has changed. Access is limited to private prescriptions that are currently unaffordable for many of the patients who have been leading campaigns to instigate the changes to regulation.
Back when cannabis medicines were rescheduled there was great excitement among patients, myself included. As is so often the case, excitement wears thin in the face of stark realities. Few had considered the time it takes to set up new pharmaceutical supply chains and to design and implement clinical studies. Similarly, no one, at least in patient activism, had thought ahead to the realities of the NICE approval process for prescriptions via the NHS.
NICE approval now presents itself as an immovable obstacle for patients, campaigners and even legislators. However, this most stringent approval process plays an important role in ensuring the NHS avoids bankruptcy and is a key factor in the sterling reputation that the service maintains to this day. Expediting this process, rather than waiting for clinical trials (that could take years) is a current focus of many advocates…
…They quite rightly argue that cannabis’ illegality, and subsequent schedule 1 status, has prevented clinical trials from taking place in the UK. Added to this is the fact that cannabis doesn’t particularly lend itself to RCT’s (Randomised Controlled Trials), due to its many active compounds. RCT’s are the gold-standard of medical evidence and a core element in the NICE approval process. It is possible that NICE might be persuaded to change tack, but given their encouragement for trials to be undertaken in certain areas, this seems very unlikely. Such a decision would have to involve politicians who are currently focused on other matters, like a General Election and the ever-looming spectre of Brexit.
This presents a serious problem for the 1.4m UK patients believed to be consuming black-market cannabis to treat symptoms. Less than 2% of all prescription medicines are supplied outside of the NHS and the vast majority of patients with chronic or long-term conditions depend entirely on the NHS for free consultations and subsidised prescriptions (and much more besides). As such, few have any form of insurance (that might reimburse private consultations, not to mention cover the cost of the medication itself) and the vast majority cannot afford to pay hundreds each month for essential medicines on top of fees for monthly private consultations (that can cost more than £200 a time). This isn’t just cost… Relying on the NHS isn’t so much the default position, as it is a cultural norm for Brits.
In the absence of NHS access it will fall to the industry to reshape this paradigm; to make private access straightforward, palatable and (most importantly) affordable for patients. Clinics focusing on cannabis medicines are being touted as a potential solution, acting as a British equivalent to the MMJ (medical marijuana) dispensaries of the USA (albeit with a great deal more regulation and the noteworthy inclusion of prescriber oversight). This may present a much needed route of access in the interim, however I believe the principal goal of the industry must be to bring cannabis medicines into pre-established clinical settings, being prescribed by all physicians wherever relevant, not left to a handful of maverick doctors in specialised clinics.
That said, it’s wonderful to be in a position to watch the first prescriptions go out to patients. A historical moment I sometimes doubted would ever come. A few even eagerly opened their first legal cannabis package on social media for all to see. Despite the cost, patients are receiving, and finding relief from, prescribed cannabis medicines. Most consume for pain or nausea. Often these are patients with no previous use of cannabis at all. Some have managed to reduce opiate use, others have moved between multiple cannabis-based medicines before settling on a product that they felt worked for them. Some inhale their cannabinoids via herbal vaporisers and others ingest oils. The number of prescriptions may be growing slowly but already we have a glimpse of what the future may look like here in the UK for CBMP’s.
MS patient and cannabis-campaigner Lesley, with her first legal cannabis delivery. Lesley is currently going through court proceedings for growing cannabis and infusing it into chocolate bars to treat her symptoms.
Whilst things may appear from the outside to be moving unbearably slowly, it certainly doesn’t feel that way from the bustle of the Grow Biotech office or at the many cannabis industry events that have sprung up more recently in London and cities around the country, (a far cry from the community halls of Brighton). The industry has not been idly sitting on its hands. Aforementioned private cannabis clinics are setting up shop, distributors are engaging with Doctors, educating and empowering them to help their patients and I’m pleased to see patient groups such as CPASS launching in summer 2019 to support patients and frontline healthcare professionals (they should be applauded for recently launching a dedicated nurses arm).
Grow Biotech is no exception. Having completed the first bulk import, we have since launched our joint venture ‘Logist Pharma’ alongside long-time unlicensed importer IPS Pharma. Logist remains the leading distributor in the UK, having delivered over three quarters of all prescriptions for unlicensed cannabis medicines direct to patients doors. We now act as exclusive UK distributor for some of the world’s leading producers and have access to other manufacturers’ products if patients are prescribed them.
Logist is also involved in setting up groundbreaking UK trials. These include an as-yet-unannounced pain study. This trial plans to on-board large numbers of patients in its first year. We also recently announced collaboration with US producer Columbia Care. Their products are being supplied as part of a study investigating CBD as a treatment for psychosis; an area of great importance in the wider conversation around cannabis’ impact on mental health. With these, and other trials still in discussion, Logist is committed to providing the evidence that NICE considers to be lacking. This is, of course, a long-term solution. No trials set up this year or next will present valuable data in the immediate term.
If you had told me back in 2014 that the advocacy organisation I set up would become so prominent, that myself and a handful of patients would in essence become the “faces” of medical cannabis advocacy in the UK and that, with a successful law-change in place, I would end up working for the very company facilitating the first legal bulk import of cannabis and implementing some of the first clinical trials, I would be more than a little surprised and, I expect, very proud. But, speaking as a patient, I would not be satisfied with the current state of access.
Meeting Deputy PM Nick Clegg (2016) and Being Interviewed by Jim Connelly for BBC Newsbeat (2018)
The number of prescriptions remains lower than many hoped. There are multiple reasons for this. Crucially, many doctors do not understand cannabis medicines and the endocannabinoid system to the extent that they are confident to prescribe for their patients. Logist and others in the industry provide this essential education but regulation limits what can be done. Pharmaceutical companies must be careful to stay compliant when promoting medicines and as such, there are few avenues through which they might reach out and promote services.
When the media spotlight has been focused on us, it’s not always provided long-term clarity with regards to the current state of prescribed access. Whilst we are extremely proud to have completed the first bulk import back in February, and pleased that this garnered attention from mainstream media outlets, the price of medicines reported at the time has been quoted back to us repeatedly as reason for patients not to inquire further. It has been much more difficult to spread the news that, since first import, we have in-fact reduced the monthly cost of medicines by 33%.
With more patients receiving prescriptions, cost will be further reduced. This is our commitment at Logist. But if perceived costs act as a deterrent, the increase in prescriptions will continue to be slow. Reducing the cost of treatment is a key focus for Logist and essential for patients whose needs are currently unmet.
Patients who desire prescribed access should speak to their GP and request meetings with a Specialist, private or otherwise (most Specialists work in both NHS and Private Clinics). Although it has always been safe to do so, patients can now discuss cannabis medicines with their doctor in more practical terms. Patients can work with their doctors to find suitable solutions to their symptoms and companies in the private sector like Logist are here to help wherever needed. Doctors can find more information here.
It may also be worth checking in regularly with doctors to ensure they are presented with up-to-date clinical evidence and that they are aware of the latest reduction in cost of CBMP’s as well as the latest trials available to UK patients.
At Logist, we have a unique insight into the progression and development of this burgeoning industry. We are under no illusion that there is considerable scope to improve patient access, and to develop the evidence base, to enable medicinal cannabis to achieve its full potential as a treatment. We’re committed to an honest and open dialogue around the potential of CBMP’s and the medicinal cannabis industry, cutting through the smoke of misinformation and providing clarity for all involved, be they Doctors, patient’s or producers. There is of course, some ways still to go.
Whilst the industry continues to grow, we would urge patients, carers, family and friends to be patient but assertive. The door is open, and widening. As a patient and advocate, it’s genuinely very exciting. Doctors are engaging with the industry for the first time, learning about these newly available medicinal products and beginning to understand their potential. Regulators, producers, distributors and doctors will need to work together if we are to build an industry that works for patients.
Lastly, on a personal note, I would hope that the industry as a whole embraces and empowers patients. Not just by enabling access to CBMP’s, but by including them in the growth and development of this exciting new industry. The internet and modern technology is changing how patients and practitioners think about medicines. As patients our knowledge and experience is invaluable in order to gain true insights into the impact of treatments. Logist hopes to utilise cutting-edge technology, as well as modern thinking, to strengthen the relationships between doctors and their patients, to enable us all to live healthier lives.
We have a unique opportunity to build a brand new marketplace, with a whole new family of medicines, practically from scratch. Let’s include patients from the very beginning.
Patient Access Specialist