Two years on – what does the data say?
Updated: Jan 25
Two years ago yesterday we saw the then Home Secretary Savid Javid, under significant public pressure, take the first step towards undoing decades of regressive policies towards medical cannabis and the patients that rely on it. The cases of Billy Cauldwell and Alfie Dingley, two young boys suffering from rare forms of epilepsy who were denied access to their medicines derived from cannabis, had so clearly highlighted the incongruous state of policy and left no option for the Conservative government but to finally admit that 50 years of policy was incorrectly based on the falsehood that Cannabis has no medicinal value. On the 1st November 2018 the medicinal use of cannabis was finally recognised and cannabis based medicines were placed under Schedule 2 – cannabis was now available on prescription. Far from the jubilant scenes we saw in America’s referendum style cannabis legalisation, there were no parties on the street, no dispensary launches or public displays of consumption. Instead here in the UK we were set with a quiet optimism and hope that at some point soon, patients would finally be listened to, legitimised and no longer criminalised. It took a whole month for the first prescription to be written and many expected this to open the floodgates for patients – but that has not been the case.
It is fair to say that we are not where we expected to be 2 years on. Children suffering from epilepsy – children such as Teagan Appleby – are still being denied life-changing unlicensed cannabis medicines on the NHS. Other patients still face significant barriers to access and those that have been successful are being served by an ecosystem of private clinics, which along with high import fees, makes accessing medical cannabis a possible but very expensive undertaking. Access in the UK has not been an overnight phenomenon; of the 1.4 million people estimated to be using cannabis for medical purposes in the UK, it is understood that fewer than 2,000 have gained a prescription to date – it is clear we have a long way to go. Understandably, it has taken time for all the key components of the supply chain to become established and for clinicians to develop the expertise required to safely and effectively prescribe medical cannabis. There are many issues facing patients today, and one which is often overlooked, and which is very unique to cannabis, is the complex position of cannabis as both a stigmatised recreational drug and a prescribed medicine. It produces challenges for law enforcement, clinicians, social care and other institutions (e.g. the DVLA currently has nothing to say on prescribed medical cannabis and driving). If not addressed, these issues will continue to cause significant distress for patients, their families and friends.
Patients who have cannabis supplied to them under prescription are fully compliant with the law, but still feel stigmatised and in some cases are even persecuted for their medication. We often hear from patients who are worried by how they will be treated by the police, and who have already had challenging conversations with employers, friends and even close family.
MedCannID was developed as a pragmatic, practical and sensible solution to address these everyday challenges faced by patients, which are specific to medical cannabis. MedcannID provides a uniquely identifiable, physical identification card that verifies the holder as having a valid prescription for medical cannabis, thereby giving comfort to the cardholder that they can be confident to hold, travel with and consume their medicine whenever it is required. The MedCannID scheme has been backed by major Police forces, healthcare professionals and is free to anyone with a valid prescription for medical cannabis.
MedCannID launched in mid-September with Alta Flora as a partner to help fulfil a common vision to empower patients through data, and collaborated in setting up the scheme for patients. The proposal has been warmly received by patients and had great traction so far. The initial pilot scheme successfully signed up its target of 100 patients in October and is now temporarily closed to new applications while the full program is built with capacity to support the wider prescription patient community.
There is currently very little available data for patients on medical cannabis in the UK. The 2018 change in legislation led to cannabis based medical products being classified as unlicensed medicines by the MHRA, who subsequently published guidance on their use, including on how these medicines are to be advertised. The manufacturers of these medicines are unable to make claims about their products. The regulations are somewhat grey when it comes to educating clinicians; it appears that educational material from the manufacturer about products can be supplied, but only if the clinician initiates the approach. Interestingly, the MHRA guidance mentions the word “patient” 10 times, but doesn’t appear to acknowledge that patients themselves may want to have access to information about medical cannabis products.
While the MHRA guidelines may be well-intentioned – preventing manufacturers stimulating demand for medicines which haven’t been thoroughly tested – there is a negative impact from these regulations when it comes to medical cannabis. Patients and clinicians don’t feel well-informed about the availability or characteristics of these unlicensed cannabis medicines. Data on medical cannabis products and information on the physiology and pharmacology of the endocannabinoid system is lacking as we emerge from prohibition. We need more communication between licensed manufacturers, public health policy makers, clinicians and pharmacists, with patient needs at the heart of the dialogue.
While MedCannID was designed to offer patients peace of mind with their cannabis medicines, one of the valuable benefits of the scheme (and of patient strength in numbers in general) is in the anonymised data that we can ethically aggregate and use to inform, educate and empower the community broadly.
At Alta Flora, we assisted MedCannID to analyze anonymised data on medical cannabis prescriptions registered with MedCannID during their pilot scheme. This data provides a unique insight into the current state of medical cannabis in the UK as the first cross-market look at medical cannabis prescription data.
We caveat the following analysis by recognising that it is a small sample group. However,we hope that we can demonstrate the power of aggregated data sets and transparency, especially in the light of the recent NHS Digital push to improve transparency in health and care. In particular, we believe that this analysis is incredibly powerful for patients and the healthcare system alike.
Who is using MedCannID?
We have looked at non-personally identifiable prescriptions submitted to MedCannID during the pilot scheme, of which 73% were for a male and 27% for a female. The youngest patient was 19 years old and the oldest 58, with a median age across the sample of 37. From the graph below we can see that a significant proportion (41) were between the ages of 25 and 43.
There was a wide variety of listed conditions for which medical cannabis is prescribed. Almost half (46%) had pain listed as a prescribed condition, often alongside another condition. The second most common condition was Fibromyalgia (21%) followed by Psychological Disorders (16%) and MS (10%)
What medical cannabis products are being prescribed?
Across our sample we found that 16 different products were being prescribed, of which 10 were flower products and 6 oil products. We found that flower was prescribed in 76% of cases and the average daily recommended dose was 0.35g
Four products account for 58% of all prescriptions, and they all fall under the category of high THC flower with an approximate 20:1 THC:CBD ratio. A full alphabetical list of the products:
Spectrum Red #2
Spectrum Red #4
Spectrum Red #1
Where are medical cannabis patients being prescribed?
There are four specialist clinic groups who are prescribing cannabis across a variety of sites:
How does this data from the UK compare to Germany?
This data provides the first general overview of the medical cannabis prescription landscape in the UK and reinforces previously held ideas about those who stand to benefit the most from medical cannabis. We will expand our prescription based analysis and understanding as the number of patients accessing MedCannID increases and provide much needed transparency on the prescribing landscape.
For further comparison we can look at successful medical cannabis programmes abroad, most notably Germany, where the health care regulator BfArM has released data relating to their patient population. We find many interesting similarities and differences with the UK and hope to provide some foresight about how the UK market may develop. We see clear similarities in the variety of prescribed conditions, with pain also being the most common condition for which prescriptions were granted in Germany, where it makes up around 70% of prescriptions (vs. 46% in our UK). Similar to the UK, MS makes up around 10% of German prescriptions. However, we also find that between 10-15% of prescriptions in Germany are for anorexia, whereas in our anonymised patient data sample there are no recorded prescriptions for anorexia.
We also see significant divergence when looking at the demographics of the patient population, with a seemingly much higher average age for patients in Germany at 56 compared to 37 in the UK. However, when we look at the age of the patients in Germany who were prescribed cannabis flowers we find a lower average at 46 years old. This brings us to the next, and perhaps most substantial difference between the two countries – the prescribed products. Our UK sample prescription data revealed that flower makes up the majority of prescriptions (at 76%); whilst flower products only account for 23% of German prescriptions. 63% of German prescriptions are for Dronabinol (Syndros in the US), a synthetic THC oil. As of yet, there are no references to Dronabinol product prescriptions found in the MedCannID data, and we plan to share more about how Dronabinol is being prescribed in the UK soon.
It is now two years since medical cannabis was made available on prescription to patients, and the market has barely moved in terms of access for patients. The UK should be a leader in cannabinoid medicines given the specialisation in life sciences and biotechnology but we are yet to fully grasp the opportunity. However, experience from other markets around the world tells us that the early years of a medical market that is opening up are often characterised by slow progress which then compounds over time. We expect the technology shift in healthcare precipitated by COVID to have a positive impact on the UK’s cannabis industry as telehealth, remote monitoring and e-commerce allow a far more patient-focused and efficient industry to emerge.
Aggregated, anonymised information from MedCannID will be helpful for public health regulators to ensure that the UK can provide safe, effective and compassionate care to patients for whom medical cannabis provides relief. Taking Germany as an indicative model, the UK is, in our view, well set and long overdue for further regulatory progress and an increase in the use of medical cannabis. There is room, and an urgent need, for regulators, public health bodies, scientists and companies to bring new ideas to the table, and to build on the long history of the UK already being a leader in scientific discovery; for the sake of Teagan Appleby and all the other patients, let’s hope that we move more quickly in the next two years than we have done in the past two.
Note: Views and opinions expressed in this blog are those of the authors and do not necessarily reflect the official policy or position of any other agency, organisation or company. Assumptions made in the analysis of the data provided are not reflective of the position of any other entity or person, other than the authors. We are making this information available to add to the knowledge bank and advance understanding of the medical cannabis frameworks, its use cases, patient challenges and in support of efforts to provide safe, effective and compassionate care for all our citizens.
The anonymised data and figures presented in this blog are derived from a relatively small cohort of citizens and may vary highly in the future. It is not designed to be further aggregated or reported as ‘study’ results. This blog does not constitute nor should it be construed as legal or medical or commercial advice. Always consult your GP and/or specialist doctor prior to trying any treatment, medication, substance or supplement.
Published November 2, 2020
By Gavin Sathianathan