The UK ‘Should Ultimately Be Leading’ The World In Compassionate Clinical Cannabis Trials

Robin Emerson, Managing Director of the Jorja Emerson Centre, was introduced to the life changing impact medical cannabis can have after his daughter was diagnosed with a chromosome disorder which causes a severe form of epilepsy.

Suffering with more than 30 seizures a day, Jorja’s family tried every form of treatment with little effect. However, after becoming one of the first children in the UK to be prescribed medical cannabis, Jorja is now seizure free and thriving. 

Ahead of his keynote speech at Cannabis Europa London 2023, we caught up with Robin to discuss his journey from activist to business owner over the last few years, and what his hopes are for the Jorja Emerson Centre and wider medical cannabis industry over the next few years.

Can you tell me a bit about your background, and how you first got involved in the medical cannabis space?

I was part of the change in 2018 and the campaigning around that. I worked with different members of the government and did a lot of media in the early days before the law was changed.

My daughter Jorja became one of the first children to get a prescription in November 2018. My life was turned upside down when Jorja became ill and her diagnosis completely  changed everything. Healthcare became my life, and I made the decision to make it my career path.

For the last five years now, I’ve worked in the sector with various companies, but I’ve been working to set up what we’re doing here since December last year, and we’ve managed to successfully secure investment for what we wanted to do.

Can you walk us through the various arms of your business?

We’ve now opened the Jorja Emerson Centre, which is just next to Paddington Station in London. It’s the UK’s first innovative medicine clinic, which means that cannabis is just one of the tools in the toolbox of our clinicians.

We’re in the process of negotiation at the moment for psilocybin and ketamine trials, and we have a large diagnostic centre at the clinic allowing us to do things like MRIs. We have our own lab on site, so we can do full genetic sequencing and full blood work as well. So, it’s a state-of-the-art facility. There’s not really anything like it in London.

We cover quite a lot of areas, from chronic pain to psychiatric services to paediatrics, and we’re expanding those services over the next couple of months.

There are a lot of different independent businesses within the group, which have crossover with lots of members of our team enabling us to offer a wide scope of services efficiently.

We’re working with Tilray on a brand called Jorja’s Dream, which will offer five different strains of flower, and the idea of that is to drive costs down within the market. So, a starting price would be £4.95 per gram.

My relationship with Tilray goes back four or five years. They sponsor Jorja’s medication to this very day. They manufacture a product that’s called Jorja’s Hope and pay all the import costs. I don’t think they envisioned the NHS was going to take as long as it has to get on board.

Alongside this we’ll be launching a Jorja Access Scheme, offering those on means-tested benefits and members of the armed forces free consultations and repeat prescriptions, and they will only pay £3.95 a gram.

Also, for anyone that already qualifies for our cannabis programme, we offer consultation and prescription costs for £199 for the year, or a subscription plan of £19.50 per month, meaning the patient only has to pay for their medication on top.

Right now we probably have around 50 employees or more working for us across the group, and we’ve just purchased a new pharmacy in Plymouth, which we’ll be opening as Jorja Direct, which will be able to deliver prescriptions to people’s front doors.

In Brighton, we’re also about to open a second clinic alongside our partners Living Room Health, who look after our diagnostics side.

So, the plan is to have Jorja Emerson/Living Room Health centres right across the UK, where people are able to come in and get an MRI scan for £200–£250, making healthcare accessible on the high street. That’s what we’re trying to do.

We’ve been quietly working behind the scenes for a while to make sure we’re offering a top-level service for patients while driving down the costs. We want to make it more accessible where it has just been so out of reach for so many people.

Am I right in thinking you also have some upcoming trials at the clinic?

So, we have partnered with a senior clinical research organisation at the clinic, and we’ll be running through clinical trials.

We’ve managed to move forward quite a bit on this front. We’re in draft two of the protocol for the Jorja’s Hope clinical trial, a separate product and business.

We’re hoping that we’ll be able to kick off the first phase of the RCTs around June, and that will be a recruitment for adults with intractable epilepsy.

In parallel we’re going to be running a compassionate trial for approximately 12 children with intractable epilepsy, giving them access to the product free of charge.

Off the back of that, we’re going to host RCT trials at the clinic and hope to be running trials on other compounds as well. We’re quite progressed in negotiations to host a trial on a psilocybin product at the moment.

Because we have the capabilities of the on-site diagnostic testing and scanning  etc., it allows us to run the trials on site in a cost-effective manner that others wouldn’t be able to do.

Last week saw the UK’s first-ever debate on the economic potential of its medical cannabis sector. Do you think this is a sign of change in the government’s attitudes towards the industry?

It’s all very good having certain MPs back us and say, ‘yes, this is fantastic’, but in reality that isn’t how you move things forward.

In reality, the MPs can only do so much, they aren’t necessarily against it, but we need to engage with the health authorities and the MPs in a more meaningful way and get everyone on side and expand medical access.

And they’re only going to open up their conversations if they see us as a legitimate medical industry, actively working to actually help patients and prove the safety of our products.

https://businessofcannabis.com/uk-holds-first-ever-debate-on-economic-contribution-of-medical-cannabis/

I personally believe a lot of us are here to do the right thing. A lot of us here want to help patients. A lot of us here believe in the medical industry. And a lot of us here are simply trying to make fast money and push recreational down the line.

I’m not against recreational, but it’s a different topic. We’re not here to discuss drug policy. We’re here to discuss people getting access to medications via medical doctors.

To me, that’s the bit that we need to get right first for anybody to have any faith in the cannabis plant and its safety.

What do you say to arguments that RCTs for epileptic children are unethical, as some of them have to be taken off medication to be placed on a placebo?

This is based on naivety from our sector, and not understanding that in the first phases of an RCT, you don’t use children.

You put adults on it first. The product is trialled on children after we establish that this is safe on an adult. We don’t just give some sick children a placebo. That’s part of the wider issue of demonising our health system.

There’s a very, very strict process in the UK around running placebo-controlled trials, and around being ethically qualified to go on a placebo trial.

I’ve always believed that we should have a two-pronged approach where we have children like Jorja, like many other children and adults who are very ill and don’t have time to wait for licensed medications to come along. We should run compassionate studies and give compassionate access to those patients immediately.

I do believe the UK should be at the frontier of this, we should be heading up compassionate programmes and ultimately be leading the development of these new potential treatments.

But, equally, that’s not an excuse for us to just go and give everybody medication and not do the RCTs either. It must be a hand-in-hand process moving forwards.

And I believe once we do these early RCT trials, because of the conversations I’m having with the government, they will get behind us and they will get behind the industry.

The United Kingdom is not going to change its whole health system for just cannabis; it isn’t happening. So, we either bend and fall in line with what the system is, or we’ll still be having this exact same conversation in five years.

What did you make of the government’s response during the debate?

I think this scaremongering of science and of clinical trials from the industry has been totally wrong. I also don’t understand why we demonise companies like Jazz Pharma.

The bottom line is, we’re five years down the line and what has changed? Nothing in my view. I don’t see anything much different than what it was five years ago when we changed the law.

We need to properly engage. We need to roll our sleeves up. And we need to do the work – the medical trials and the research that we should have been doing over the last five years.

A lot of preclinical studies have thrown out some very surprising results. People will swear blindly behind things in the UK because of anecdotal evidence, but when we actually get some scientific evidence, sometimes we’re getting the total opposite result.

That’s why science needs to play its part, and that’s why clinical trials need to play their part, so we can actually understand this plant a lot better than what we think we do.

I think we’ve got a lot of work to do. And I think we need to start with a bit of reality of where the industry actually sits right now, and stop believing our own press. We need a lot more voices heard, and we need credible voices.

The UK’s prescription framework has been done a certain way for years, and actually that’s for a very good reason, to keep us safe, to ensure that we don’t release multiple compounds on the market we don’t really know much about.

The cannabis plant saves my daughter’s life, and I can say that. But I can equally say, as an educated person, that we also need to be very careful on what we do regarding compliance and understanding the long-term effects of certain compounds in people with pre-diagnosed conditions.

The UK’s medical cannabis industry, its economic potential, and its ongoing problems for patients will be discussed in detail at Cannabis Europa London on May 2-3.