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Project Twenty21 - an eventful first year!

Cup Cake with sprinkles on it with the number one a light

In November 2019, Drug Science launched Project Twenty21 – Europe’s first and biggest national medical cannabis registry.

The project was set up for simple reasons. Even after legislation around cannabis based medical products (CBMPs) was changed by the UK Government, too many people are still unable to access these treatments. The cost of these medications can be exclusively high, and the recognised evidence base for their effectiveness is patchy, so doctors feel unprepared to prescribe them.

It means that people with long-term and chronic conditions (such as Multiple Sclerosis), who don’t respond well to other more established medications, are going without the therapies and medication that they deserve.

Project Twenty21 sets out to change this situation, by

  1. enrolling 20,000+ patients to its registry, creating the largest body of evidence for the effectiveness and tolerability of medical cannabis.

  2. demonstrating to policymakers that CBMPs should be as widely available, and affordable, as other approved medicines for patients who would benefit from them.

…and we believe these measures will make the most powerful possible case for NHS funding, changing the treatment landscape for thousands of people.

A year on from its launch we caught up with Project Twenty21’s Director, Amelia Middlemiss. She told us about the progress that’s been made, some of the challenges the project has faced, and the benefits it’s already having for patients across the UK.

So, Amelia. What a year! How’s it all going?

I think it’s fair to say that nobody saw 2020 coming or could predict the effect the pandemic would have on all of our lives. Because of that I’m especially proud of what we’ve been able to achieve with Project Twenty21. So much has happened!

Has the project been well received?

It’s clear to me that patients have been crying out for a project like this one. Just days after our launch last November, 4,000 people had signed up to register their interest. And over the past twelve months, that number has risen to over 8,000. Our plan has always been to get at least 20,000 patients onto the registry by the end of 2021 and my hope is we’ll hit this target with ease. After that, we’ll do our best to recruit even more. Ideally, we want Twenty21 to stay open and available to patients until clinicians are able to prescribe CBMPs via the NHS.

What’s been happening behind the scenes?

How long have you got! It’s been an incredibly busy time. In the first six months, we did everything from an ethical sign off of the project, to gaining support from five licensed CBMP producers. We have a further 18 interested too. This was always going to be key. It means more product choice for patients and doctors. And by getting involved, these companies then reduce the cost of their medications for Twenty21 patients. We’re focusing on increasing the number of clinicians supporting the project and these clinics and independent prescribers are all CQC registered, which means they’re monitored and inspected by the independent regulator used by the NHS.

Is there a lot of industry partnership?

There has to be as they’re the ones providing the medication. But this isn’t an industry-led project in any shape or form. It’s entirely about improving patient outcomes and changing the way the NHS prescribes. So, we’ve always made sure that the project is led in conjunction with the patients themselves.

From the start, UPA (United Patients Alliance) have been a part of our work. And soon after launching, we also added representatives from PLEA (Patient Led Engagement and Access). Other partners for Project Twenty21 include the independent clinician education service, Medical Cannabis Clinicians Society and tech company Alta Flora, who are creating a patient support app that enables patients to track their medications and symptoms so that they can be more in control of their medical condition and responses to treatment.

How have the patients been getting on?

Really well. We now have more than 8000 people who have subscribed for updates. Over 200 of those have gone through an initial consultation and a handful have already received a three-month review. Frustratingly, there have been complications around access to cannabis flower for some patients, but I’d like to reassure anybody reading that we aim to have this fully rectified in the coming weeks.

Has the coronavirus pandemic changed anything?

One thing that became very apparent was that prescribing, within the project itself, was going to have to adapt. So we quickly gained an agreement for the clinics involved to conduct ‘virtual appointments’ with patients. That reduced the need for patients to attend anything physically and put themselves at any kind of risk from Covid-19.

Have there been any other challenges? With any new project or initiative, especially in this field, there’s going to be a lot of comment and opinion. I understand that. But at times we’ve had to deal with misinformation on internet forums and the like. The great news is that whenever patients have contacted us with concerns about something they’ve read online, we’ve been able to set the record straight and reassure them.

For example, some people had heard that the project was only open to the first 20,000 patients. Or that you can only get very specific kinds of medication. None of this is true and never has been. So I’d say to anyone who has read something on a forum that they’re concerned about – to contact and we’ll happily answer your questions.

What’s next for the project?

We’re looking at making data-gathering easier, by adapting and developing the tools clinicians use to do this part of their work. And we’ll be bringing in more CBMP products, so patients have a greater range of treatment options.

Perhaps most importantly, we’re aiming to extend Project Twenty21 over the coming year, so that it can include patients with epilepsy and those receiving palliative care. We’ve been speaking with patient representatives and related charities about this, and the conversations so far have been really positive (you can find a full list of medical conditions that are already accepted onto the project here). And of course, we’ll share any news on this with you – as soon as we have it!

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