Health

Patient groups are the key to a thriving cannabis industry

Campaign participants claim that it’s time for the cannabis industry to give advocates the right support. After all, they are moving this sector forward.

Representatives of major cannabis advocates in the United Kingdom and Europe are seeking further support from people in the industry, emphasizing the significant contribution they make to the development of the sector.

Speak on the panel Cannabis europe In London on Wednesday, June 29, some major activists said the industry had taken patient effort for too long.

In the words of event author and moderator Mary Biles, “We have moved forward and created this industry. ”

It wasn’t the CEO’s tireless efforts that changed the law in November 2018 to open up a potentially profitable market, but what many saw as an opportunity to make “quick money.” But there was.

Only £ 62 a week from the government survived a mother and family whose child was ill and was a full-time caregiver. Despite their limits, it was the patients who were at risk of educating others and seeking change.

Jacqueline Poitras, founder of patient group MAMAKA, IACM Patient CouncilIs an activist responsible for changing Greek law after her daughter fought for access to medical cannabis.

“Our advocacy group started ball rolling in 2016,” said Poitras.

“As in many other countries, it was the patients who asked politicians to amend the law. What we have done since then is that of everyone else who is not in the value chain at this time. To play a role. “

Author Mary Billes Hosts Patient Perspectives Panel

A bridge between patients and industry

Since the revision of the law, Medcan Support and PLEA (Patient-led involvement for access) In the UK and internationally, the IACM Patient Council has become an important bridge between the patients they support and the large companies that manufacture their medicines.

Medcan support There are currently more than 500 members, most of whom are parents and families of children with severe epilepsy who have heard that cannabis may help them and are anxious for help and seeking advice.

PLEA has more than 1,200 members, all run by patients living with chronic illness.

It is these organizations that take the lead on Work with the private sector to lobby for better standards for medical cannabis patients, educate clinicians and cannabis-inexperienced patients, and build evidence bases.

They are support workers, social media managers, campaigners, educators and consultants. Still, the majority, if not all, are volunteers.

“We all encountered this,” Poitras said.

“We were called to it, and it’s not something we can leave. If we don’t do it, no one else will do it. We convince people and politicians that cannabis can help them. We are a bridge between businesses and customers. “

She added: “But how long do you need to keep working on something on a volunteer basis?”

From left: Hannah Deacon, Matt Hughes, Dr. Bonni Goldstein, Jacqueline Poitras, Dr. Curry Seaman

PLEA representatives have revealed that they work behind the scenes for up to 40 hours a week, all free of charge.Its chair Lorna brand He recently won the Platinum Jubilee Royal Voluntary Services Award and has worked in the voluntary sector for 40 years.

Matt Hughes, co-founder of Medcan Support, has a full-time job in IT and is cared for by his disabled son. But he spends the night answering questions from other family members. He’s not going to ignore them, after all he was there himself.

What’s more, he and his small team organize and host webins, create social media content, and Private clinic And regulatory agencies.

“This is the heart of what a group of patients do, not just what social media and people see from the outside. It’s usually us who sort out issues in the private sector when the industry isn’t,” he said. Talked to cannabis health. ..

“We act as an important link between patients and the industry, doing huge amounts of things that are often overlooked. When a product is discontinued and there is a risk that the patient will be left untreated. We organize it. If Medcan didn’t exist and we didn’t do all the work, who would? “

The value of a living experience

When players in the industry want to hear from their patients, they are usually expected to share valuable insights and living experiences for free.

“All that information and experience [advocacy groups] Thousands of hours of this and the thousands of hours invested in the patients around us, gathered over the years, are valuable information for these companies, “said Poitras.

Hannah Deacon, co-founder of Medcan Support and director of Maple Tree Consultants, launched an initiative called Patients First with Volteface earlier this year.

“”My concern is that people see medical cannabis as a commodity and a quick way to make money, “she said.

“It’s not sustainable. You have to listen to the patient, because that’s the way to do a solid business.”

The butler continued. “This is very personal. Companies should not try to access this kind of information for free, as this kind of information is so valuable and commercial that they are trying to achieve. If you’re trying to do that, you should help the people who run those organizations. Some companies do it, but it’s not enough. “

Patient at the center of everything

One such company is Chilam, a medical cannabis distributor. Its co-founder and CEO, Monique Ellis, is a cannabis patient who has been fighting endometriosis for over 20 years.

Chilam puts patients at the center of its business strategy and invests in a comprehensive R & D program before it gets on the right track.

However, Ellis does not consider this a luxury or token gesture, but a need to keep the company in good shape for the long term.

“We took The view that patients are the absolute center of everything we do, “Eris said.

“It needs to be at the forefront and center of your business model.t is sometimes described as the luxury of developing an R & D program before making a profit or trying to complete a funding round, but it is not a luxury, it is a requirement. You need to invest in it, it needs to be a core dimension of your business plan, and you need to consider those budgets. “

Chilam co-founder Monique Ellis

Ellis continues. “We need to make sure we are involved with the cannabis industry as well as advocacy groups. We are a naive patient of cannabis that exists outside the small embryo industry of the kind we are working on. You need to think about.

“That is, you need to provide financial support to your charity. It should be part of your social impact strategy. If these aren’t the values ​​that underpin how your business operates, then something scalable is No, I will not have a patient for the rest of my life. “

The secret to market development

Currently, about 17,500 people Legal prescription For British cannabis. Opinion polls show that 1.4 million people are self-medication, suggesting that the statutory market meets only a small part of its potential.

Of the thousands in the expert registry that can legally do so, only 110 are prescribing.

Advocates are the key to reaching those people.

“Continuing the advocacy group is absolutely essential for this developing market,” Deacon said.

“We are worried that we may be living in this bubble right now. The only way to reach the millions of people in this country who can benefit is to talk to naive patients. To support advocacy groups who can do naivety, attend meetings, and create education.

“Companies can’t do that, but we can do it. That’s why it’s essential to the development of this sector. But we’re volunteers and our job without the support of the industry. Cannot be expanded. “

Conclusion

We are not talking about huge investments here. For just £ 200 a month, Medcan Support can do much more, according to Deacon. And if 10 companies don’t get cash, they can afford to hire someone to work full-time.

Poitras ended by encouraging cannabis companies to contact their patient groups in their country. She states: It can be placed in the system. “

The butler added: “Every day you enter the office, you need to think about who you work for. Who are your stakeholders?

“If you’re focusing on margins, you’re not doing it for the right reason. You need to focus on the person you serve, your patient and your doctor. You started it. When do you think you will start to win. “

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Patient groups are the key to a thriving cannabis industry

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