First cannabis-based medicines approved for NHS use but campaigners say it’s a ‘missed opportunity’

The Canary

Two cannabis-based medicines have been recommended for use on the NHS for the first time.

Epidyolex has been approved for two rare types of epilepsy, Lennox-Gastaut and Dravet syndromes, while the spray Sativex has been recommended for muscle spasms in multiple sclerosis (MS).

Charities welcomed the move, but said thousands of other people who could benefit from cannabis-based medicines were left in limbo.

A change in the law in 2018 made it legal for doctors to prescribe medicinal cannabis.

However, many doctors have been reluctant to do so, citing a lack of clear guidance on prescribing and issues over funding for the drugs.

This has led some families to go abroad in search of medicines, with some bringing them into the UK illegally.

The new guidance from the National Institute for Health and Care Excellence (Nice) looked at cannabis-based products for several conditions.

It found a lack of evidence regarding their use in the management of chronic pain and said people with chronic pain should not be prescribed drugs containing THC (delta-9-tetrahydrocannabinol) – the psychoactive ingredient in cannabis.

It also said more research was needed on cannabis-based medicines to treat forms of epilepsy other than Lennox-Gastaut and Dravet.

Around 8,0000 to 9,000 people in the UK suffer Lennox-Gastaut and Dravet syndromes.

Millie Hinton, from the campaign End Our Pain, said the guidelines were “a massive missed opportunity” to prescribe medical cannabis for thousands of people with a range of conditions.

“It is particularly devastating that there is no positive recommendation that the NHS should allow prescribing of whole plant medical cannabis containing both CBD (cannabidiol) and THC in appropriate cases of intractable childhood epilepsy,” she said

“It is this kind of whole plant extract that has been shown to be life-transforming for a significant number of children, including these involved in the high-profile cases of last year which led to medical cannabis being legalised.

“A number of the families that we represent met senior Nice representatives in person only a few weeks ago.

“They explained first-hand that they were paying thousands of pounds every month for private prescriptions of whole plant extract medical cannabis and that their children were showing dramatic reductions in seizure rates and equally dramatic improvements in quality of life.”

She said Nice is wholly focused on evidence from randomised control trials, but medical cannabis is not always suited to these trials.

She added: “This restrictive guidance is condemning many patients to having to pay for life-transforming medicine privately, to go without or to consider accessing illegal and unregulated sources.”

Simon Wigglesworth, deputy chief executive at Epilepsy Action, welcomed the decision to recommend Epidyolex.

However, he said there were many thousands of people with other complex and treatment-resistant epilepsies who could potentially benefit from cannabis-based medicines.

And he said there was a lack of high-quality clinical evidence, particularly around products that contain THC.

He added: “Though this is disappointing, we appreciate that clinical research is vital to ensure that any treatment recommended for use in the NHS is safe and effective.

“We are aware of ongoing efforts to bring forward research into cannabis-based medicines for epilepsy, including those containing THC, at pace.”

Nice also recommended Sativex to treat muscle spasms in MS, a common symptom of the disease.

Genevieve Edwards, director of external affairs at the MS Society, said: “We’ve been campaigning for access to Sativex for years, and it’s brilliant Nice has finally listened.

“These guidelines are an important first step, but don’t go far enough. No cannabis-based treatments have been recommended to treat pain, a common symptom of MS.

“Additionally, because Sativex will be funded by local bodies – who might not have the resource they need to prescribe it – even more people could miss out.”

She said evidence shows cannabis-based treatments could help around 10,000 people with MS get relief from pain and spasms when other treatments have not worked.

The families of two children, Billy Caldwell and Alfie Dingley – both of whom have severe epilepsy, have repeatedly campaigned for easier access to cannabis medicines in the UK.

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  • Show Comments
    1. I think we need a national debate about the following idea, maybe I’m wrong, maybe I’m on to something, any thoughts?

      The NHS should grow and sell its own cannabis, then it could benefit from generating millions/billions of pounds Stirling for itself, becoming mostly self-sustaining, whilst researching and promoting cannabis based medicines and others from the funds they would get, to find exactly who benefits from what. Leaving this all to outside agency would be a huge mistake, and definitely not beneficial to those that really need it (as is being proven daily).

      Billions are already being made in the USA, so why does our government (who absolutely love money) not seize on the chance to swell the NHS’s coffers? Particularly as we are in Austerity. I never thought Austerity was meant to be a program of preventing our nation/people from recovery, but it certainly doesn’t look like a program designed to help anyone except the filthy rich get richer.

      The NHS should be publicly owned, but also be responsible (where possible) for earning funds to boost what we give them. Cannabis and hemp produced by the NHS, not by outside private business (on their behalf), could be used to fund proper research and development of all kinds of drugs (prescription and illicit). I personally think that the NHS would benefit greatly from taking control of the whole UK drugs market, keeping all the development in-house (with in-house science and research), putting an end to for-profit private drug enterprise, and offering society a proper, well researched drug supply chain.

      The drugs developed & taken over by the NHS, would then be free at use within the NHS, and could also be sold for profit, both locally (i.e. consumer drugs like Cannabis), and externally (consumer and prescriptive drugs), at a price no private for-profit corporation could countenance for long.

      I’m not talking about turning the NHS into a full profit-driven corporation, but allowing it to secure ALL the drugs it needs, by using a well known, and widely used social drug like Cannabis to fund its own science, research, production and distribution networks, which would mean that no outside agency could screw with patients and the NHS or politics by artificially increasing the price of drugs (as has been done to the extreme already).

      I want to see an NHS that is quite capable of defending itself, and funding enough of itself to prevent any outside influence from ever being able to undermine it again. I am not talking of any privatisation of the NHS with this idea, the NHS should remain publicly and democratically accountable, but able to make it’s own drugs, and be able to sell some or all to augment its income, whilst keeping itself free at point of use for medical conditions in the UK.

      To me the NHS is really the only entity which could do this well, and help put an end to drug wars (of all kinds). Instead of being in the dark about drugs, the NHS would become our guiding-light on all drugs knowledge, both the legal and non-legal kinds. Their unbiased science, and fair pricing of drugs would end the prevalence of ignorance, end Big Pharma, and would be much more trustworthy and friendly a drug-dealer/educator than anything we have previously experienced.

      Drugs are an essential tool of the NHS, more so than any other organisation, it seems to me to be a no-brainer, the NHS should research, create, control, and sell drugs as it is they who are the experts in drugs. Pharmaceuticals certainly won’t like it, but then big pharma is a massive con and drain on public finances because of their dishonest business model, their love of money over life, and the fact that they use public money to research drugs, but then charge us additionally to use the drugs they have developed with our money, all without ever paying it back, and also doing their best to avoid paying tax in this country like so many over-sized businesses do (not to mention being blood-guilty for the sake of profit).

      The NHS could kill Big Pharma by subsuming it, taking back the drugs our money created, putting the NHS in charge of all drugs, ensuring that some of the valuable infrastructure and staff from Big Pharma end up working for the NHS in house instead, and by taking over Big Pharma, much in the way Big Pharma (as private enterprise) has done to others. All possible if it were made law.

      Let us fund our NHS, and let the NHS also fund itself (without the NHS having to pay taxes btw). Let the NHS become to us, all things medical, and an institute which cannot ever again be subjected to political and commercial exploitation, as it has had done to it for over 40 years of constant Tory, Tory-Lite, and Lib-Dem abuse.

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