The team creating what will be Europe’s largest medical cannabis patient registry has welcomed the recent Government report into the impact of the 2018 law change – but warned that access is still ‘too limited’.
Last week, the Advisory Council for the Misuse of Drugs (ACMD) released a landmark report assessing the impact of the 2018 rescheduling of medical cannabis. But following its publication, the report has faced criticism for overlooking a number of key issues.
The UK’s independent scientific body for drugs, Drug Science, was among those to respond, highlighting several of its concerns and stressing the need for a registry to measure outcomes of patients using cannabis based products for medicinal use (CBPMs).
The ACMD report indicated that there is strong clinical evidence regarding the effectiveness of licensed cannabis medicines in the UK. However, Drug Science was quick to point out that many unlicensed cannabis medicines, which are currently deemed unsafe or ineffective by medical professionals in the UK are being successfully prescribed at a large scale in other countries.
Although the UK has three licensed cannabis-based medicines (Sativex, Nabilone, Epydiolex), Drug Science said evidence from other nations shows that CBPMs could be used for a much broader range of conditions than NICE’s “limited” list of recommendations.
While it agreed with the need for randomised control trials (RTCs) to provide clinical evidence, it urged the UK to look to other countries and take global findings into account.
The charity also voiced its concerns about the limited number of products available to patients who require medical cannabis, referring to evidence it collated from twenty children with treatment-resistant epilepsies.
The survey supported the use of unlicensed products such as Bedrocan, Bedica and Bedrolite rather than the approved cannabis-based treatment for epilepsy, Epidiolex.
In its official response, Drug Science commented: “Some of these patients who were treated successfully with these unlicensed products had to revert to a less effective CBPMs due to cost reasons, causing their children’s seizures to return.
“No parent should have to do this. Whilst there are options of private prescriptions, as the ACMD reports, costs are prohibitive for most of these families with a chronically ill child.”
This echoed other criticisms which have surfaced over the past week, many of which have focused on lack of affordable access to CBPMs for the average patient.
Members of the PLEA (Patient-Led Engagement for Access) Community, for example, said that it was “disgraceful” for the report to overlook this issue.
Despite its concerns, Drug Science agreed with the ACMD’s conclusion that a patient registry for CBPMs is vital for effectively monitoring the pattern of CBPM prescriptions and the associated effects on patients.
Its response drew attention to the recently launched Project TWENTY21, which aims to collect data of up to 20,000 medical cannabis patients over the course of the next two years.
CEO of Drug Science, David Badcock, says: “We welcome the recent report from the ACMD on CBPMs in humans, and strongly agree with its recommendation that the availability of a CBPM registry is crucial for future assessments of the impact of rescheduling of CBPMs.
“This is the reason that Drug Science is delivering the largest patient registry in the UK, collecting private prescription data for up to 20,000 patients, monitoring safety and effectiveness.”
With a focus on anxiety disorder, chronic pain, MS, PTSD, substance use disorder and Tourette’s syndrome, the charity aims to create the largest body of evidence in Europe for the safety and efficacy of CBMPs.
Drug Science hopes that this new evidence base will galvanise the NHS into taking action and direct more funding into cannabis-based medicine.
The charity called on the National Institute for Health Research (NIHR) to fund research on medical cannabis products so that “peer-reviewed research can continue to determine the benefits and harms of these products.”
Badcock added: “Project Twenty21 will provide evidence for NHS funding where the benefits of treatment with medicinal cannabis is proven to outweigh the potential risks. We welcome any opportunity to support and interact with the Government’s registry and to be able to collate both private and NHS prescription data.”
In June of this year, Project TWENTY21 began beta testing its patient pathway and started working with the London-based medical cannabis clinics to offer an initial 100 patients access to medical cannabis.
Around 8,000 people have signed up since the project launched, with more than 200 having received an initial consultation.
Drug Science will publish its first peer reviewed article on the initial findings of the initiative early next year.
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