It’s time the cannabis industry gave advocacy groups the support they deserve, argue campaigners, after all, they are the ones driving the sector forward.
Representatives from some of the UK and Europe’s leading cannabis advocacy groups have called for more support from those in the industry, highlighting the vital contribution they make to the development of the sector.
Speaking on a panel at Cannabis Europa in London on Wednesday 29 June, several leading campaigners said the industry had taken the efforts of patients for granted for too long.
In the words of Mary Biles, author and moderator of the event, it is the patients who “forged ahead and created this industry”.
It wasn’t the tireless efforts of CEOs which changed the law in November 2018, opening up a potentially highly profitable market – but also what many saw as an opportunity to make a “quick buck”.
It was the mothers and families, whose children were sick, who were full-time carers, surviving on just £62 a week from the government. It was the patients who put themselves at risk to educate others and call for change, despite their own limitations.
Jacqueline Poitras, founder of patient group MAMAKA and representative of the IACM Patient Council, is the campaigner responsible for changing the law in Greece, after fighting for her daughter to access medical cannabis.
“Our advocacy organisation started the ball rolling in 2016,” said Poitras.
“As in so many other countries, it was the patients who asked the politicians to change in law. What we have done ever since then is fill the role of everybody else who’s not in the value chain at the moment.”
The bridge between patients and industry
In the years since the law change, organisations such as Medcan Support and PLEA (Patient-Led Engagement for Access) in the UK, and the IACM Patient Council internationally, have become a vital bridge between the patients they support and the big businesses producing their medicine.
Medcan Support now has over 500 members, most of whom are parents and family members of children with severe epilepsy who are desperate for help and seeking advice, having heard that cannabis might help them.
PLEA has over 1,200 members and is run entirely by patients, all of whom are living with chronic conditions.
It is these organisations which take the lead on liaising with the private sector, lobbying for better standards for medical cannabis patients, educating clinicians and cannabis naive patients and even building the evidence base.
They are support workers, social media managers, campaigners, educators and consultants. And yet the majority, if not all, are volunteers.
“We all happened into this,” said Poitras.
“We were called to it and it’s not something that we can walk away from. If we don’t do it, nobody else is going to do it. We are convincing people and politicians that cannabis can help them. We are the bridge between companies and customers.”
She added: “But how much longer do I have to continue working at something on a volunteer basis?”
Representatives from PLEA revealed they work up to 40 hours a week behind the scenes, all for free. Its chairperson Lorna Bland has spent 40 years working in the voluntary sector having recently received a Royal Voluntary Service Award for the Platinum Jubilee.
Matt Hughes, co-founder of Medcan Support has a full-time job in IT, and a disabled son to care for. But he spends his evenings responding to questions from other families. He isn’t going to ignore them, he has been there himself after all.
On top of that him and his small team are organising and hosting webinars, creating social media content and acting as the vital go-between for private clinics and regulators.
“This is the core of what patient groups do, it’s not just social media and what people see from the outside, we’re usually the ones sorting out the issues in the private sector when the industry isn’t,” he told Cannabis Health.
“We do a huge amount that goes unnoticed, acting as a key link between patients and the industry. If a product is stopped leaving patients at risk of being left without medication, we are the ones sorting it out. If Medcan didn’t exist and we didn’t do all the work, who would?”
The value of lived-experience
When industry players do want to listen to the patients, they are usually expected to share their valuable insights and lived-experience for free.
“All of the information and experience that [advocacy groups] have gathered over the years, in the thousands of hours that have been invested into this and the patients around us, is valuable information for these companies,” said Poitras.
Co-founder of Medcan Support and director of Maple Tree Consultants, Hannah Deacon set up an initiative called Patients First with Volteface, earlier this year, which pays patients to participate in focus groups.
“What concerns me is that people see medical cannabis as a commodity and a way to make a quick buck,” she said.
“It’s not going to be sustainable. You need to listen to patients, because that’s how you develop a robust business.”
Deacon continued: “This is very personal. Businesses must not try to access this sort of information for free, because it’s very valuable and it’s a commercial thing that they are trying to achieve. If you are trying to do that, then you should help the people running those organisations. There are companies doing that, but not enough.”
Patients at the heart of everything
One company which is doing so is medical cannabis distributor, Chilam. Its co-founder and CEO, Monique Ellis, is a cannabis patient herself, having battled with endometriosis for over 20 years.
Chilam has put patients at the heart of its business strategy, investing in a comprehensive research and development programme before it’s even properly off the ground.
But Ellis doesn’t see this as a luxury, or a token gesture, rather a necessity that will set the company in good stead for the long haul.
“We’ve taken the view that the patient is at the absolute heart of everything we do,” said Ellis.
“It needs to be front and centre in your business model. It is sometimes described as a luxury to be able to roll out an R&D programme before you’re profitable or are trying to complete a funding round, but it’s not a luxury, it’s a must-have. You need to invest in it, it needs to be a core dimension to the business plan and you need to make those budget considerations.”
Ellis continued: “We need to make sure that we’re engaging with advocacy groups, and not just within the cannabis industry. We’ve got to think about cannabis naive patients that exist outside of the kind of small embryonic industry that we’re working with.
“That means that we need to give financial support to charities – it should be built into your social impact strategy. If these are not the values that are underpinning the way that you operate as a business, then you don’t have something that’s scalable and you won’t have patients for life.”
The key to developing the market
There are now said to be around 17,500 people with a legal prescription for cannabis in the UK. According to polls, 1.4 million people are self-medicating, suggesting the legal market has only fulfilled a tiny proportion of its potential.
There are just 110 doctors prescribing out of thousands on the specialist register who could legally do so.
Advocacy groups are the key to reaching those people.
“Keeping advocacy groups going is absolutely vital to this developing market,” said Deacon.
“I fear that we live in this bubble at the moment. The only way we’re going to reach the millions and millions of people in this country who could benefit, is by supporting advocacy groups who can get out and talk to naive patients, attend conferences and create education.
“Companies can’t do that, but we can and that’s why we are vital to the development of this sector. But we are volunteers and we cannot expand the work we do without being supported by the industry.”
The bottom line
We’re not talking about huge investments here. According to Deacon just £200 a month would allow Medcan Support to do more – and if 10 companies stumped up the cash, they could afford to employ someone to work full-time.
Poitras ended by urging cannabis businesses to reach out to patient groups in their country, she said: “Everything has to be built around this and if you’re not doing it at the moment, take a very critical look at your company and see where this can be placed within your system.”
Deacon added: “Every day that you go into the office, you need to think about who you’re working for. Who is your stakeholder?
“If you’re focused on your margins, then you’re not doing it for the right reasons. You need to be focused on who you serve, which is your patients and your doctors. I think when you start doing that, you’ll start winning.”
Khiron announces opening of first Zerenia medical cannabis clinic in Brazil
The new clinic will increase patient access to medical cannabis.
European medical cannabis group, Khiron, has opened its first Zerenia medical cannabis clinic in Ipanema in Rio de Janeiro, Brazil, as it continues its expansion into the country.
As part of its expansion into a number of jurisdictions across the globe, including Germany and Spain following recent developments, Khiron has now opened its Zerenia Rio clinic.
The clinic will provide physical consultations and telehealth services, connecting patients with medical specialists trained in the ethical, safe and responsible prescription of cannabinoid-based medications.
The medications focus on the treatment of conditions such as chronic pain, neurological pathologies, palliative care, rheumatology, psychiatry, geriatrics, endocrinology, gastroenterology, gynecology, otorhinolaryngology and dermatology.
Located in Ipanema, a city with more than 12 million people, the clinic’s initial phase will have a total capacity of approximately 23,000 patient consults per year.
The clinic will be under the leadership of Dr Eduardo Faveret as medical director and will open with more than 13 doctors for both in-person and telehealth models.
Dr Faveret commented: “Brazil continues to experience exponential growth in prescribing doctors and demand for medical cannabis products by patients. Zerenia Rio, is positioned as a comprehensive and humanised pioneer in patient health service and prevention to improve the quality of life of Brazilian families.
“We have assembled a multidisciplinary medical team that covers diverse medical cannabis specialties and treatments, which makes our Zerenia Rio clinic unique in Brazil.”
Dr Faveret and the Zerenia Rio clinic will be supported by Khiron’s strategic alliances with doctors and patient associations, including CANNAB in Salvador de Bahia, and leading medical distributors such as TAIMIN in Rio de Janeiro and Sao Paulo.
Later this year, Khiron is expecting to launch additional THC medical cannabis products in the country, which will complement its current global portfolio.
CEO and director of Khiron Life Sciences, Alvaro Torres, said: “Khiron has developed a unique, successful, and sustainable model with the implementation of Zerenia in Colombia, Perú, and the United Kingdom.
“Brazil is Latin America´s largest addressable market with more than 210 million people and we believe that our Zerenia model will replicate the success we have experienced around the world.
“We have served more than 25,000 individual patients across the globe through our model, with high peer patient acquisition and retention rates. We have a fantastic team on the ground in Brazil composed of doctors, nurses, patient advocates, and administrative staff in our Zerenia™ Rio clinic that will elevate our patient-first model to new levels.
“Khiron’s Zerenia Rio clinic in Brazil will also allow us to continue to generate more patient-based evidence on the pharmacoeconomic benefits of our Khiron-branded medical cannabis products, and through this data, Khiron could eventually be able to provide insurance benefits for patients as we have done in Colombia.”
Akanda and Cansativa to supply German patients with cannabis flower
The collaboration will see patients have access to two novel cultivars.
Akanda Corp and Cansativa are collaborating to supply the German market with dried flowers from Akanda’s EU-GMP certified indoor grow facility in Sintra, Portugal.
Under the collaboration, Akanda is expected to deliver at least 1,000 kg of flower to Cansativa over the first 12 months of the agreement.
All pharmacies in Germany will be able to purchase the products through the Cansativa platform. Since the award of the Federal Institute for Drugs and Medical Devices (BfArM) in August 2020, Cansativa Group is the only company with approval for the distribution of medical cannabis from German cultivation.
Co-founder and CEO of the Cansativa Group, Benedikt Sons, commented: “We are very glad about this agreement that allows us to introduce two novel medical cannabis flowers to the German market.
“This enables patient access to an additional supplier with a new and innovative range of medical products. This exciting cooperation marks another step in improving the product diversity and security of supply on the German market.
“We look forward to a long-term relationship with Akanda, with whom we share an important part of our mission: We want to enable physicians, pharmacies, and patients by giving them access to an extensive medical product portfolio and help improve the quality of life with the help of medical cannabis.”
CEO of Akanda, Tej Virk, added: “Our prized purpose-built indoor grow facility is the only one of its kind in Portugal that can produce EU-GMP medical cannabis equivalent to the adult-use grades available in North America.
“It has both the quality and scalability to meet the growing demand for medical cannabis in fast-growing markets across the EMEA region, such as Germany.
“We are equally excited to be partnering with the Cansativa Group to bring some of our best strains to Germany through their platform. This supply agreement represents one of the largest agreements in the nascent European medical cannabis industry and is certainly Akanda’s most substantial commercial development to date, enabling new patient experience.”
Khiron gains German distribution capabilities with new acquisition
Khiron Life Sciences has completed the acquisition of Pharmadrug Production GmbH.
Through its acquisition of Pharmadrug Production, Khiron will have access to EU-GMP manufacturing capabilities and a distribution hub for medical cannabis.
It will also allow Khiron to accelerate the expansion of its medical product portfolio with additional exclusive flower varieties and a THC‑dominant full spectrum extract that combines the medicinal properties and areas of application of the established THC isolate formulations (dronabinol) with the specific advantages of a full-spectrum extract.
President of Khiron Europe, Franziska Katterbach, stated: “We are very pleased that we have now received all the necessary permits and licenses in connection with the acquisition and integration of Pharmadrug Production and that we can continue our growth course in Europe on an expedited pace with full control over the value chain up to the pharmacy. We are very excited to take advantage of the Pharmadrug Production’s excellent infrastructure and experienced team, which will enrich us professional and personally.
“After opening our Zerenia clinic in London last year and now adding a powerful asset in Germany, our European force is complete and ready to ramp our sales in Germany.
“Now we expect to sell our products faster and at higher margins directly to German pharmacies, which will save distribution fees. A first signal in this direction is the imminent expansion of our medical portfolio for European patients.
“These are products manufactured exclusively in Europe, and our medical portfolio now covers the entire spectrum of chemotypes and forms of administration. We will provide more detailed information on our new products in a timely manner.”
The development is in line with the Khiron’s strategy to strengthen its foothold in Europe, having also recently welcomed Spain’s progression on the regulation of medical cannabis, stating it is looking forward to bringing its clinical expertise and evidence from Khiron-owned Zerenia Clinics to Spanish patients.
Khiron, which recently reported a record 2022 Q1 with revenue of $4.6m, has stated that additional new products are already in the pipeline, that will comprise the entire spectrum of therapies with medical cannabis to be able to offer the right therapy for every patient.
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- Khiron announces opening of first Zerenia medical cannabis clinic in Brazil
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- Akanda and Cansativa to supply German patients with cannabis flower