Drug Science delays Project Twenty21 pricing changes in response to patient concerns

Drug Science has announced that changes to the Project Twenty21 pricing model will not come into effect until March, in response to concerns from patients.

Earlier this month the organisation announced several changes to its observational study, Project Twenty21, which aims to create the UK’s largest body of evidence for the safety and efficacy of medical cannabis.

This included changes to the pricing model for patients who are enrolled on the study, as well confirmation that eligibility criteria for participants was being broadened out.

The initial price cap of £150 for Project Twenty21 formulary products is set to be replaced by a set £7 cost per gram of flower and per millilitre of oil. 

The changes were due to come into effect on 1 February, however in a statement released today (Tuesday 18 January), Drug Science has announced a one month extension, with new pricing models not due to come into force until 1 March.

Those behind Project Twenty21 say they recognise that the news would be “unwelcome” to some patients and will continue to carry out “discussions” with its partners to “alleviate issues where possible”.

It comes amid some concerns from patients about the potential rise in costs to their medication.

A petition calling for costs not be increased was launched following the initial announcement, which now has over 500 signatures.

Danny Wilson, a Project Twenty21 patient and member of PLEA (Patient-Led Engagement for Access), told Cannabis Health that he fears the new model may leave patients facing difficult choices between medication and other daily essentials.

“Joining Project Twenty21 and becoming a legal medical cannabis patient has been a blessing, but patients need more options. It was a difficult decision [to join the project] and I’ve been living off food banks and just scraping by since,” Danny said.

“This month when my PIP [Personal Independence Payments] was finally awarded after a very long process, I had hoped that along with the money I make from my part time job, it would be enough to cover the cost of my prescription and appointments.”

Concerns have also been compounded following recent issues with supply chains, which have left patients facing delays to their prescriptions, and an incident involving suspected mould, which was found on a flower-based product last year.

Danny continued: “After three months without receiving my prescription due to stock issues, I had been hoping for a better start to the new year. This increase is a kick in the face after I have had to return the product more than once. I don’t want to have to go back to using food banks and compromising on what I can eat. I’ve been disappointed more than once with the standard of my prescription and at times didn’t think the price reflected the quality. 

“I hope there’s a huge improvement to justify this. I worry about how many people are going to suffer as a result and have to make difficult choices about remaining legal or buying essentials.”

David Johnson, a chronic pain patient, finds himself in a similar situation.

“I currently pay £​​400 a month for medication, which looks like it would go up to £560 a month with the price rise,” he said.

“I receive PIP, and it’s pretty much impossible to find another £160 a month without cutting necessities or finding a cheaper option. One of my options is selling my car, even though I have mobility difficulties and do really need it, another is to go to another clinic that doesn’t charge repeat prescription fees. The other obvious possibility is to turn to illegal options.”

David added: “I am already ordering less than I really need for optimal health because of my budget, so really the announcement of a 40 per cent hike, when I am not sure I can keep the heating on this year, felt like a kick in the teeth when I was already vulnerable and down.”

Another patient, who wished to remain anonymous, is in full-time work but still struggles to manage the monthly cost of their prescriptions.

They explained: “As an autistic and ADHD patient I have found two different types of medical cannabis flower that are therapeutically useful for me that are part of T21. These two items at the dosages I find to be effective cost around £150 per month, excluding clinic fees.

“With the price rises this will be going up by 40 per cent to £210 which is unsustainable for me as someone in full time work, receiving no benefits paid a shade under the national average salary and living in an area with a low cost of living. I am going to need to consider returning to more regular usage of stimulants or the possibility of sourcing my supply of effective medicine in alternative ways.”

Project Twenty21 was established in 2019, to help provide the evidence base needed to facilitate NHS access to cannabis-based products. It was originally designed to run until the end of 2021.

Drug Science said the decision to alter its pricing strategy has been made by its partners, who fund the project and that a change was necessary in order to allow them to continue offering high-quality products to patients and support supply going forward.

Other patients, who are prescribed more expensive oils, told Cannabis Health that the changes will actually mean a decrease in the price of their prescription, providing they are no longer separately priced.

Continuing discussions

In a statement which was sent to all Project Twenty21 patients and Cannabis Health on Tuesday 18 January, Drug Science said they take patient concerns “seriously” and will be “continuing discussions” with its partners to solve the issues which have been highlighted.

It said: “We recently announced a change to the pricing model of Project Twenty21. We understand that the news was unwelcome for some patients, especially for those who are prescribed higher dosages or on significantly lower incomes.

“We take people’s concerns seriously, and recognise that patients would benefit from having more time to work through the inevitable financial implications. So we have agreed with the project’s partners that the pricing model will not come into effect until 1st March.

“In addition to this extension, between now and March, Drug Science will be continuing discussions with Project Twenty21 partners. We do appreciate all that you say, and are collectively working hard to alleviate these issues where possible. We hope to make a more welcome statement as soon as possible.

“We are committed to ensuring that Project Twenty21 can continue for as long as it is is able to, so that we can collect the essential data needed to influence NHS funding for medical cannabis. And if we can successfully advocate for future changes that benefit enrolled patients, we will.”

The need for a UK supply

Dr Callie Seaman, an experienced cannabis scientist and an expert in the hydroponic industry, who is consulting with a range of licensed producers in the UK, said this latest development highlights the need for a robust UK cannabis supply chain to serve patients.

“I really feel for patients who are going to be affected by the changes, resulting in a rise in prices for their medication, which is already unaffordable for many,” she said, speaking to Cannabis Health.

“This is yet another example which highlights the desperate need for the UK to develop a robust domestic supply chain, so patients have access to high quality products, which are produced in  this country. This would give us more control over the type and quality of products available and would ease extreme pressure on the system which often results in stock issues and delays to patients receiving their medication.

“Having a local supply also means the products will be fresher by the time they get to patients, as any product travelling from abroad will inevitably have been subject to metabolite changes due to ageing.”

Dr Seaman added: “This latest news again only serves to highlight why the creation of a strong and successful UK sector is vitally important for millions of patients in the UK.”

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