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Photography Tobias Tullius via Unsplash

The pain of trying to get medical cannabis to ease chronic illness

The UK government has admitted it knows the benefits, yet products are still extremely rare and difficult to obtain by those suffering from the likes of MS, Crohn’s, epilepsy, and more

On November 1 2018, the British government changed the law on medicinal cannabis, making it a legal treatment for select conditions including rare forms of epilepsy and symptoms of MS. This change to the Misuse of Drugs Regulations 2001 is a move that many saw as inevitable. After all, medical cannabis has been legal in a number of countries, including Argentina, Australia, and Germany, for some years. Frequent moves are being made to completely legalise all forms of cannabis, as is the case in Canada.

The change in the UK though was partly in response to a review by the Chief Medical Officer who concluded that some medicinal cannabis products were effective for some medical conditions. Campaigners widely celebrated this victory while scientists and researchers also welcomed the decision. Around the UK, those who have been reading about the benefits of cannabis-based treatment (or self-medicating using cannabis for years) we’re looking forward to something that could finally make their lives better.

Tetrahydrocannabinol (THC) and cannabidiol (CBD) are the two primary cannabinoids that are found naturally in the cannabis sativa plant. CBD is non-psychoactive which means that it will not get the user high, while THC is the main psychoactive component of the cannabis plant. Research suggests that while CBD may be good for inflammation and neuropathic pain, THC is more likely to help with spasticity and cramp-related pains. In the UK, CBD is legal for anyone to buy as long as it does not contain more than 0.02 per cent THC. While there are products that contain higher levels of THC, they’re not currently legal for the general public to purchase.

There have been some success stories when it comes to medical cannabis in the UK. Before the law was changed, there were a number of high-profile cases of children who needed medical cannabis products to survive – such as Alfie Dingley and Billy Caldwell. After a strong fight, these families were granted exceptions by the UK Home Office due to high-profile campaigns that were supported by the media and celebrities alike, and now have access to specific products via the NHS. The most common drug for this is Epidiolex, a liquid containing 100 mg cannabidiol per ml.

But since the law has been restructured, the speed of change for others in need has been much slower. Formal figures are not available, but the number of NHS prescriptions are thought to be very low – possibly even in the hundreds. As a result, many are turning to ‘street cannabis’ to treat pain issues  – like those suffering from MS and Crohn’s. A recent YouGov survey estimating that approximately 2.8 per cent of Britain’s adult population are using these drugs to treat their pain. The survey found that more than half of adults using street-bought cannabis to treat chronic health conditions said they do so on a daily basis.

Karen lives in Edinburgh with her seven-year-old son Murray. He has Doose Syndrome – a rare form of drug-resistant epilepsy. He started having seizures aged two, but they increased in frequency over the years, and doctors tried multiple medications without success. “We were constantly going to the hospital,” says Karen, “By the end of January 2017, he was having up to 600 seizures a day. We were constantly phoning ambulances and staying at the hospital.” Murray was given more and more varying antiepileptic drugs (AEDs) alongside steroids which still did not ease the seizures. It was then that Karen started campaigning for access to cannabis.

Last January, Murray was in hospital suffering constant seizures when Karen travelled to Holland to find a doctor who would write her a prescription for the drug that would help her son. Neurologists started treating Murray with phenobarbitone (a general central nervous system suppressant) which reduced his seizures. Karen started using the prescribed THC oil alongside this in May. Murray’s seizures stopped in June. Since then, Murray has been back at school and seizure-free for eight months.

“Our neurologist won’t prescribe it because there have been no trials. He doesn’t know if it’s safe, he tells us. So we pay £1,350 per month for the oils under private prescription” – Karen, parent of medical cannabis user

Scott Maguire is the CEO of Cannaray, the UK’s largest medical cannabis and CBD company. He explains that “The biopharma industry is concerned about cannabis and the potential threats to their franchises, so they are wielding a lot of capital and lobbying government to impede access.” explains Scott, “Also, there is still a stigma around this still illegal plant although this stigma is dissipating rapidly.”

Meanwhile, other people have criticised the guidelines released by the National Institute for Health Care and Excellence (NICE) suggesting that they actually advise against prescribing in most situations. While other experts feel this is simply a fear of the unknown for a lot of doctors who fear the potential impact on their career and livelihood if they were to get it wrong.

Due to this controversy within the industry and potential issues around stigma, many are still going without potentially life-changing medication or paying for private prescriptions at great personal cost. “Our neurologist won’t prescribe it because there have been no trials. He doesn’t know if it’s safe, he tells us,” says Karen, “So we pay £1,350 per month for the oils under private prescription.”

Currently, there are only a handful of medical cannabis products available on the NHS. The NHS website states that medicinal cannabis would only be used for: children and adults with rare, severe forms of epilepsy, adults with vomiting or nausea caused by chemotherapy or people with muscle stiffness and spasms caused by multiple sclerosis (MS), and only when all other avenues of treatment have been exhausted.

“People are being charged by the police and taken to court for using cannabis. The government has admitted it knows it has medicinal benefits – so why isn’t it available?” – Karen, parent of medical cannabis user

In other parts of the world, medical cannabis has been around for longer and is used frequently to help treat patients with great success. Grease star Olivia Newton-John recently hailed medicinal cannabis and other natural remedies for the ‘turnaround’ in her cancer treatment. Macmillan Cancer Support state that,  “It is still unclear whether using cannabis has any anti-cancer effects. But there is some evidence that the chemicals in cannabis might help with symptoms such as nausea and pain.”  

In November 2019, the National Institute for Health and Care Excellence (NICE) released new guidelines around medical cannabis products containing both CBD and THC, and many are hopeful that this means things will begin to change. In Germany, MPs voted to legalise the use of medicinal cannabis in 2017, but it is only recently that medical professionals in the country have started to utilise the products.

Earlier in the month at Prime Minister’s Questions, Labour MP Ruth Jones asked when medicinal cannabis would be available for the families that need it. Prime Minister Boris Johnson responded that it was the current government that legalised medical cannabis, and that the health secretary Matt Hancock will meet with the families.

For many, change can’t come soon enough. “Adults are growing plants and making their own oils because it’s cheaper than paying for a private prescription,” says Karen, “People are being charged by the police and taken to court for using cannabis. The government has admitted it knows it has medicinal benefits – so why isn’t it available?”