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Patients stress cannabis industry needs to be more patient-led

A panel, titled Industry Insights, took place as part of Medical Cannabis Awareness Week. It aimed to connect professionals, healthcare providers and patients to discuss the issues surrounding the UK cannabis industry.

Medical Cannabis Awareness Week ran from the 1 – 7 November with a series of panel discussions. Each panel combined patients with doctors, industry professionals and healthcare practitioners to discuss some of the key issues surrounding medical cannabis access.

In the panel led by Cannabis Health managing editor, Sarah Sinclair, patients highlighted the need for the cannabis industry to recognise their part to play in it. They stressed that if there were no patients then there would be no industry. The patients were adamant that industry professionals must engage with patients from the start and that, so far, not enough has been done to work with them.

Sarah was joined by Alisia Ratliff the CEO of Victus Capital Ventures, Dr Callie Seaman the director and formulation chemist at Aqualabs, Eric Bystrom the CEO of Cellen and Leva Clinics, Jack Pierce who is a patient at Patient-Led Engagement for Access (PLEA), Mike Breeze the Managing Director of Pure Isolation Ltd and Pious who is also on the Management Committee at PLEA.

Patient led industry

Dr Callie Seaman stated that communication needs happen between the industry and patients but there is a fine line between listening and exploitation.

“Getting patient groups and communicating with them is the biggest way. A lot of patients feel like they are not listened to. It’s about making sure that they are being listened to and feeling that they are not being exploited for the information,” she said.

“It’s about being compassionate towards them as well. I feel like that has to be the start of it. Transparency is going to be a really important factor in this as patients feel there is a lack of it and that they don’t get the information they want. They don’t get information about how the plant is grown, how it’s processed or its age. Transparency is the best way to drive this forward.”

Pious, who is a medical cannabis patient, agreed with Dr Seaman. He would like to see the industry respect the knowledge that cannabis parents have.

“It’s about valuing the patient. A lot of patients have prior experience with using cannabis so it’s about respecting that knowledge. Some have experience of growing, consuming, what they like or just consuming. A lot of patients are already aware of what strains work for them, what products they like and what they want out of it.”

He added: “It can be very traumatic for patients to share or attend events like this to share deeply personal information. It’s great to spread awareness and get some valuable information but if companies or organisations are using patients on their panels then there should be remuneration as this is a multi-million-pound industry. It ultimately goes back to, without patients, especially in the UK then there wouldn’t be an industry.”

Lack of diversity for patients

The patients also highlighted that there was a lack of product diversity within the UK market. The limited amount of products within the market also meant there were issues with quality, cost and consistency.

Pious said: “Saying something is GMP certified doesn’t necessarily equate to a quality product. It ties back into the earlier point of valuing patients and their knowledge. In one sense, the government doesn’t have to worry about prescription products going to the market because no one is going to consume that product.

“If you are telling patients that is quality flower, yet half of it is sugar leaves or there are still leaves attached, or its burned or there are seeds, then that’s not quality flower. I think it’s insulting and it’s damaging to the industry.”

He continued: “We are such a small group of patients, and we talk. There are known platforms where you can find out what to avoid or what product is good. If the industry actually talks to patients then you can ask what we expect out of our flower. It’s really simple things that could be easily addressed.”

The patients stressed again that honest conversation is key when it comes to fixing consistent quality issues. It may also stop the flow of patients heading back to the illegal market due to the quality of cannabis on offer.

Cost for Patients

The cost of prescriptions and the lower quality flower was also raised.

“We’re paying a lot of money for our prescription as it’s not cheap. It’s really expensive. It’s good for the industry to recognise that in the UK, we have the national health service which is free. If you are operating in private industry and are not going above and beyond the NHS then you are going to be in for a shock when your patients are no longer buying your product,” Pious said.

Jack added that reaching the higher quality of cannabis can often be out of reach for patients due to cost. He also stressed that there should be a greater emphasis on terpenes.

“Another thing with cost and quality as a patient is that to reach the higher qualities, which are still mid-tier, they are significantly expensive. They are costing £120 for 10 grammes and are considered the higher quality cannabis for the legal market,” Jack added.

Alisia Ratliff the CEO of Victus Capital Ventures offered her point of view which is not only from the industry perspective but as a patient too. Originally from Florida in the US, she has experience in the legal markets in the US as well as Jersey in the UK.

“I’m a patient here in Jersey and getting access to flower was just so difficult. It would take weeks for my prescription to be filled but then the quality of the flower is really subpar. I came from the states where I had been consuming cannabis for the last four years and something that has been helpful for my chronic pain has been variety.”

She explained: “Sometimes, flower doesn’t work for me so I need a vape cartridge or I might need edibles or oil. That’s one of the things that I find daunting here is that you don’t have that diversification of products.”

Alisia highlighted that it’s the same producers when it comes time to choose a product that is at odds with the UK being the largest producer of cannabis. She believes the UK will struggle to diversify the portfolio of products so that they can choose the method that works well for their aliment.

“It’s weird when the UK and GW Pharma are the largest exporters of medical cannabis but it’s not coming directly into your community. That rings all kinds of pound signs in that it is not focused on what patients need.”

Patients and audience poll

Sarah raised the results of a poll that had been running during the panel discussion. The audience members were asked to vote for what was most important to them.

The results revealed that 77 per cent of attendees felt product quality was the most important aspect of the medical cannabis industry while a further 46 per cent said patient engagement. A further 38 per cent chose ethical practice while just 23 per cent chose corporate responsibility.

Entry level into the industry

The industry professionals said that the industry can be difficult to enter due to barriers with cost, legislation hurdles and the length of time it takes to get products approved. Dr Callie Seaman offered her experiences of countries like Denmark and how it compares to the UK.

“In having worked with countries like Denmark, I think the licensing process needs to be made a lot shorter. It takes far too long in this country to obtain a cultivation license. What happens in this country is that a facility needs to be built before the license is granted which makes it impossible for the everyday person to be able to even enter the market.”

She suggested that there is experience and expertise to be found in the legacy market. “The legacy market has got some amazing people within it who have got far more experience than anyone who is involved in the industry at this point. They are being ignored at the moment.”

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