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The Medical Cannabis Industry Was ‘Started By Patients’ And They Play An ‘Important Role’ In Pushing It Forward

ACCORDING to the most recent figures from Prohibition Partners’ European Cannabis Report, the number of privately prescribed, unlicensed medical cannabis items dispensed in the UK last year jumped 425% to 23,466.

Despite this blistering growth, patients repeatedly cite feeling forgotten and disconnected from the both medical professionals and businesses who rely on them to continue operating.

Ahead of Cannabis Europa London 2022, taking place on between June 28 -29, BusinessCann spoke to Professor Mike Barnes about why this is and what can be done to solve this disconnect between patients, doctors and businesses.

Can you tell us a bit about who you are and the work you do across the Cannabis industry?

Yes, thanks for asking me to be here today. I’m a neurologist and I’ve worked for the NHS and universities for most of my working life. I was first involved with cannabis nearly 20 years ago actually, when GW Pharma were trying to develop what is now Sativex, which was the first licenced cannabis medicine, now still used and licenced for drug resistant spasticity in multiple sclerosis. 

Nothing much happened after that was licensed because NICE said it wasn’t to be used as it wasn’t cost effective. The next thing was in 2016, when I was asked to do a report for the APPG (All Party Parliamentary Group) on drug policy, which I think rekindled the medical cannabis debate. 

Fairly soon thereafter, in early 2018 I was asked to help Hannah Deacon and the family get a licence for little Alfie Dingley and we succeeded in summer 2018 and were granted a Schedule 1 licence. Alfie was the first person to be prescribed in the UK and I think that was instrumental in finally changing the law on first November 2018. 

Then on that day actually, we formed the Medical Cannabis Clinicians Society, which now has over 300 members of mainly doctors, but clinicians generally. 

I run a consultancy where we deal with lots of different clients in the cannabis space called Maple Tree, I run that with Alfie’s mother Hannah Deacon. 

Then last year, I formed the Cannabis Industry Council, which now has over 100 trade members, including clinics, dispensaries, importers, producers, parliamentary bodies, lawyers, all sorts of people, everyone involved in the cannabis space. And that’s been going for about a year. So in a nutshell, that’s me and my involvement in this new and very exciting cannabis industry.

Maple Tree and Volteface recently launched the Patients First Initiative, can you tell us a bit about the problems this is trying to address?

The cannabis industry is unique in that it was started really by patients. It’s sort of upside down from a classic medical approach where a pharmaceutical company thinks of a medicine, develops a medicine, launches a medicine, and sells it to the doctors who sell it to the patients. 

This is all upside down in that it’s a patient-driven, lobbyist-driven initiative to get cannabis legal in this country and others. This is a pattern that’s happening in America, for example, with Charlotte Figi, in Ireland, with Vera Twomey’s daughter. 

So patients know the medicine, many of them have used it on the black market. They know a lot about it, frankly, they know a lot more than most of their doctors do. So it’s an industry above all else where the patients really do need to be involved in the choice of product and what they want for their own particular needs. 

But also they have a valuable contribution to make to the industry as a whole. Some companies have embraced that, I’m not going to criticise the whole industry by any means. Some companies have done that really well and have got patient panels to help and guide their policies and procedures and their strategy. Some companies haven’t and I think that’s perhaps a criticism that UK industry hasn’t involved the patients as much as I think they should be involved. 

We’ve tried to do that at the CIC. We try and make that as a sort of requirement almost, but we can’t force that. So the Patients First initiative is designed to fill that gap so that companies can access a range of patients and ask their opinion on lots of different matters relating to cannabis medicine as a whole.

Given this is a ‘patient driven’ industry, how and why has this disconnect between patients and medical cannabis operators developed? 

As I say this is not a universal issue, there are many companies who have embraced this ‘correct model’ and do involve patients in their general strategies. 

I think it probably harks back to the pharmaceutical industry that doesn’t have a tradition of involving patients, customers, consumers, users, whatever you want to call people who use the medicine, they didn’t have a tradition of involving them, except perhaps at the very last stages. 

And I think there’s a little bit of hangover in some cannabis companies from the pharmaceutical model that doesn’t really involve patients, that doesn’t feel the need to involve patients. 

I disagree with that, and I think with a new industry like this, we got a chance to try and make sure that everyone involves not only the patients, but the doctors and the relevant users in the development of their company strategy.

Another key issue for patients in the UK seems to be quality and consistency of the medical cannabis they’re receiving. Given the growth of medical cannabis operators over the last year, why do you think this is? 

Some companies really do produce some very good quality products, others have failed in that to an extent. I think there’s two failures. 

One is the supply chain has been really intermittent, and in some cases really poor. It’s a hopeless thing to prescribe something that a month later goes out of stock, a month later comes into stock, and a month later it goes out of stock again. That’s Clearly not good for the patient, their pain or anxiety will come back unless they substitute with something which might not work. Of course for children or adults with epilepsy it could be a disaster because they’ll get rebound seizures. So we really do need a better supply chain. 

That can be partly helped by developing the UK industry, of course, and I’m very pleased to see that there’s now two or three UK companies that are succeeded in getting both research and cultivation licences. So by the end of this year or early next we’ll have a UK cannabis supply and that should help supply chain issues. 

The other issue is quality, and I think there’s been a bit of a drive to the bottom of pricing. Now you can think that surely the cheaper the product the better because at the moment, it’s sadly all in the private sector. People have to fork it for money out of their own pockets, which many can’t afford. So some would say surely is best to have a product that’s cheap and more people may be able to afford. 

That’s right, but the trouble is with buying anything cheap quality tends to go down and I think we’ve seen a drive to the bottom. If you look at the average price of cannabis on the black market, which varies hugely I know, across the country I believe at the moment is about £9.20 a gramme. 

If you look at the pricing on some of the flowers available legally, the prices are down to £5 a gramme, certainly £6 or £7.50 a gramme, in other words, it’s cheaper than the black market. And you can say that’s great, it discourages people from going to a black market which we don’t want and it is great, but I think driving the price right down reduces the quality and that has been an issue. I think people will be prepared to pay a little bit more if the quality was consistent and the supply chain was consistent.

So what can be done to tackle these issues, and specifically what is Patients First doing?

In fairness this is a Volteface initiative, not a Maple Tree initiative, it’s a great initiative from the Voltface team and congratulations to them. I think that their initiative is really to provide companies with a panel of opinion. 

If you’ve got a question you want to ask, you can ask a panel of knowledgeable patients about that particular question, a focus group if you like. That’s a good thing, as a start, getting that opinion is great. 

I think, though, companies should go further than that and not just convene a panel when they want a question answered. It’s a great idea, but I think certainly the larger companies and preferably the smaller ones as well should have at least one or two patient experts on their board, or at least on an advisory board. 

I would like to see that. We can’t make it compulsory but I think it should be heavily leaned upon and the CIC for example is developing a kite mark. We haven’t developed the details yet but I would personally like to see a kite mark as part of the criteria of those companies that do involve patients meaningfully not just as tokenism. 

They have a meaningful Advisory Board, let’s call it that, of patients and even pharmacists and doctors, as well. A board from those who are the business end, or the final end of the product of the cannabis industry, I’d like to see that. And I hope the patient’s first initiative will promote that cause and give people the opportunity to ask patients their opinion and see how valuable that opinion is.

Is there anything else you think companies can do to engage in patients better? 

There’s always room for improvement. There are some good patient groups around like PLEA like Medcan Support for the children and others. We’ve tried to involve those groups in the CIC as a group, and I hope that’s a meaningful thing to do. We have Matt from Medcan Support on the CIC Executive for example. 

I’m not holding ourselves up as doing that brilliantly, but I think we’re trying to go in the right direction. As I say I think all we can do is encourage companies, from clinics and even pharmacies, which get a lot of negative customer feedback, as well as producers and importers to involve the clientele in the end product and how they’re going about their business and how they can improve their business. 

If we can encourage that directly through the CIC or through other outlets, that’s great. That’s what we should be doing. We’ve got an opportunity to start a new industry, let’s start a new industry and start it properly and involve the customers, the patients, in how that industry develops. I think that’s really essential.

Could the Medical Cannabis industry benefit from a similar single point of contact with the Government the CBD industry proposed recently?

I think in many ways why we formed the CIC to give a single point of contact for regulators, for Government, for lobbyists. For us as an industry to channel our thoughts and our initiatives and our wishes to those that influence things in Government and vice versa. 

I think people like the Home Office and the MHRA would value a single point of contact. ‘We’ve got this problem in the industry, can you help us through it?’ And I’d like to think that the CIC is now that point of contact. 

We need to make sure that people know it’s there, and we’re just about to appoint a Chief Executive as a full time job which I hope will get it a higher profile than it has had over the first year of its life. It’s done a lot, I think there’s a lot more it could do. And I hope but builds on that to be a key point of contact for the industry as a whole.

One of the first tasks of this newly proposed single point of contact with the CBD industry will be to create a blueprint for how the industry will develop. What dies this look like on the Medical Cannabis side?

At the moment, the CIC in collaboration with Maple Tree and a lobbying group called Tendo are now doing a lobbying project to the Government which actually started about six to eight weeks ago. 

It was based on a document that we’ve produced in Maple Tree called ‘10 Recommendations for Government’, I think if the Government listens to some of those recommendations we’d have a better industry. 

To give you just a few examples, on the medical side I think it’s really important that GPs prescribe. At the moment, they can’t initiate prescription, they can do follow ups but they can’t initiate a prescription, which I think is a bit daft because a lot of the cannabis benefits are if you’d like GP areas, such as anxiety, mild to moderate pain, sleep issues, appetite problems, they’re GP issues, they’re not consultant specialist issues.

So I think opening up the ability for GPs to prescribe would be really important, and that hopefully will be a way to get into prescribing on the NHS, which is our ultimate goal. 

The government can help make it easier to prescribe by reducing the need to get a cannabis prescription approved by a peer group. That can be quite useful in the early days, but there’s no other medicine I’m aware of that needs approval by the colleagues of a consultant when that consultant’s decided to prescribe something. That slows things down and puts another barrier to prescription. 

Particularly NICE (National Institute for Clinical Excellence) has come up very negatively against cannabis. They say there’s not enough evidence. I disagree with that fundamentally, because they’ve looked at it as a pharmaceutical product. 

So if we can get the government to look to persuade NICE or to develop another body that looks at botanicals generally, not just cannabis but other botanicals psilocybin, for example. If the botanical NICE comes out with recommendations I think that will help doctors to be reassured and to prescribe. 

There’s two or three things the Government, if it listens, could think about to help the industry.  We’re trying to persuade them that there’s a very strong economic argument. 

The cannabis industry will create jobs, we estimate about 100,000 jobs, which is really needed post Brexit and post COVID and will develop tax income. 

At the moment income is going into the black market, it’s going to the criminal market, I personally would rather see decent amount of income come to the government through corporation tax and income tax. It could raise several hundreds of millions, probably around £500 million of tax income,  So there’s very strong economic arguments for the government to help us develop this industry. 

What about the medical side, is there anything doctors can do to help develop the industry? 

Of course, there’s major medical arguments. This will produce good medicine for a lot of people with chronic conditions who badly need it, probably in excess of 2 million people would benefit from a prescription. 

We do need to persuade some doctors and Doctor bodies to move into this century and embrace cannabis. 

They need to at least allow their members to try the medicine and see if it’s right for that patient without interference and the threats they’re getting at the moment. 

I think there’s a lot more we need to do lobbying on in doctor bodies as well, some of which have been particularly unhelpful. 

Jersey recently changed regulation to allow GPs, not just specialist doctors, to prescribe medical cannabis. Do you think the wider UK could learn from this case study?

I think Jersey is a very good example, I gather that around 2%, if not slightly more of the population of 100,000, in other words about 2000 people, have been prescribed. That’s about the par for the course, globally 2% or 3% of the population will probably benefit from cannabis. 

So Jersey are getting there, and they’re getting there safely. I’m not aware of any issues because GPs are prescribing on Jersey and the Government, I think, should learn from that. 

What’s the problem? It’s done in Jersey, there’s been no issues in Jersey, there’s not been inappropriate prescribing as far as I’m aware in Jersey. Why should GPs inappropriately prescribe any more than consultants do. Consultants don’t have a special knowledge of cannabis. 

So I think there’s a lot the government could look at in Jersey and say, ‘well why did we restricted to consultancies, it doesn’t make any sense?’. 

The trouble is that doctors are not educated on cannabis medicine or endocannabinoid system despite the fact that’s been discovered for 30 or 40 years now, it’s not really on the curriculum of medical schools. 

We could debate forever why that is, but basically it’s not. The problem is that every medical court has set its own curriculum to an extent and it’s not on there. So doctors emerge as qualified without any real knowledge of the endocannabinoid system or cannabis as a medicine, we need to do something about that we are doing something about that through for example, Drug Science and the Medical Cannabis Clinicians Society. 

I do a monthly training programme for doctors and I do something else called the Academy of Medical Cannabis. I’ve taught about 250 doctors now, but that’s small and what we need is to push those alternative ways of teaching. 

The US have got it right in the sense there’s quite a lot of courses, sadly you have to pay for them, but there’s a lot of good quality courses. 

Again, it comes down to the patients pushing the doctors. Go and see the GP, go and see the consultants and say ‘I want to try cannabis, I think it might help me, and here’s how you can learn about it.’ 

Now many doctors would react badly to patients telling them that, but the better doctors will say ‘okay, I don’t know much about this medicine and I’d like to learn about it then I can give you an informed opinion’. 

Many doctors are sadly rejecting it on ignorance grounds, and giving the patients  uninformed, ignorant opinions. So there’s a lot we need to do with teaching. We’re doing a little bit by bit, but I think again, the patient can play an important role in pushing their doctor to learn more about the potential benefits of cannabis.

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