We have all seen the sad video clips and reports. Seriously ill children suffering from mostly rare disorders who appear to respond well to cannabis based treatments.
The parents have to go abroad and literally smuggle these medicines back home. Not only is there great expense involved but technically they are breaking the law.
The law changed in November 2018 to permit specialist doctors to prescribe medicinal cannabis for the first time – but it’s not working the way we expected.
Parents still cannot easily get these medicines on prescription.
Real life examples of parents who need cannabis medicine for their children
These are just a handful of BBC reports of parents struggling to obtain medicinal cannabis that ease their children’s conditions:
- Follows two Scottish mums smuggling prescription cannabis into the country to give to their seriously ill sons.
- The mother of Alfie Dingley, 6, says she is “delighted” her son will receive cannabis-based treatment.
- Tracey Rossiter’s son Ethan has a rare genetic disorder which means he only has a few years to live.
- Former TOWIE star Danielle Armstrong says she bought cannabis oil for her friend who was dying from breast cancer.
What conditions is medicinal cannabis best at treating?
Epilepsy, spasticity in multiple sclerosis (MS) and nausea caused by chemotherapy appear to respond best to cannabis based medicines.
There are a huge number of anecdotal supposed cures for a whole range of conditions ranging from menstrual cramps to cancer. These have yet to be proven to a level that warrants developing new medicines.
What medicinal cannabis is legally available in the UK?
Only 3 mainstream medicinal cannabis drugs are available in the UK. Two are made by a UK company GW Pharmaceuticals.
- One of only 2 fully licensed products is an oral spray called Sativex, that relieves muscle spasticity in some MS patients. It contains 2.5 mg of cannabidiol (CBD) and 2.7 mg of tetrahydrocannabinol (THC) in each spray, as well as several other naturally occurring cannabinoids and oils. It’s effectively concentrated cannabis.
- The other is Nabilone – a synthetic (man-made) cannabis used to treat nausea and vomiting resulting from chemotherapy.
- The third mainstream medicine is for epilepsy. Epidiolex has been licensed in the US and is currently being licensed here is the UK. It is available on specialist prescription, according to the NHS.
Cannabidiol oil you buy in health food shops is not pharmaceutical grade so you can’t be sure of its strength, quality, contents or consistency,
Cannabis products in the Netherlands and other countries are not properly licenced medicines. That means they have not undergone clinical trials and strict controls that UK regulations insist on to protect public health and safety.
The fact that some seem to work does not appear to sway the UK medical authorities.
Why are doctors slow to prescribe medicinal cannabis?
It’s all down to the official guidelines issued by NICE, the National Institute for Health and Care Excellence. These are the rules that doctors must follow when prescribing medicines.
Right now, NICE is extremely cautious about recommending any medicinal cannabis. In their opinion, there is not enough evidence that they are ‘cost effective’.
Why don’t pharma companies make more of these drugs?
There’s no money in them – that’s the bottom line. There are two main drivers for pharma companies to invest in thorough research and clinical trials of a medicine and bring it to market:
- It can be patented giving the pharma company exclusive rights for 20 years. A great example of this was Viagra made by Pfizer.
- Demand is high enough to ensure high sales revenue. That means that it treats a condition that a significant number of people suffer from.
Cannabis cannot be patented.
GW Pharmaceuticals is the most active pharma company in this field. It grows 300 tonnes of cannabis plants under UK licence each year. It’s the only one that produces medicines derived from cannabis plants, although that is changing since many US states legalised cannabis. More research is taking pace there into potential new cannabis based treatments.
Other factors holding back medical research into cannabis medicine
Because cannabis has been an illegal Class A drug for so long, that has greatly discouraged clinical research.
Also, there is simply not enough evidence that they actually do what some people think they might achieve.
For example, two experts in the field of Child and Adolescent Psychiatry at Massachusetts General Hospital, Shane Shucheng Wong and Timothy E. Wilens MD, systematically analysed 2743 citations and 103 full texts in a search for evidence of cannabinoids as a medical treatment in children and adolescents.
From that volume of information they selected a mix of studies using participants, small scale trials, case reports and so on where there was enough data about under-18s to warrant inclusion in their analysis
Benefits for epilepsy and chemotherapy-induced nausea showed the strongest evidence. Less so for PTSD, Tourette’s, neuropathic pain or spasticity. Not surprisingly, they concluded that more research was required.
Pharma companies charge high prices for successful medicines
Even if new medicines were developed, pharma companies want to milk successful drugs for as much profit as possible. That’s just how capitalism works. It can lead to manufacturers charging such high prices that the NHS cannot afford to buy them for sufferers.
A good current example is a drug called Orkambi that works for cystic fibrosis. It’s made by a US pharma company called Vertex. Their list price is £104,000 for a year’s supply. Even Government intervention with Vertex management failed to persuade them to reduce the price. The NHS says it simply can’t afford that much.
Sativex, mentioned above, is also very expensive and doctors are officially discouraged from prescribing it on the NHS.
What’s next for medicinal cannabis in the UK?
Parents will continue to do whatever it takes to get medicines for their children. Although the police treat bringing medicinal cannabis in from abroad with a ‘light touch’, it’s still an illegal activity.
It’s most likely that new advances will originate in the US now that cannabis is gradually being legalised there both for recreational and medicinal purposes.
Meanwhile, parents and ‘angels’ will continue to seek supplies from abroad to help sufferers.
BBC video reports
Disclosure: Can Cannabis Save My Child? https://www.bbc.co.uk/programmes/m0005yzn
Cannabis licence will give son ‘normal life’. https://www.bbc.co.uk/news/av/uk-44539516/cannabis-licence-will-give-son-normal-life
‘We’ve seen the benefits, now we need help’. https://www.bbc.co.uk/news/av/uk-44902331/we-ve-seen-the-benefits-now-we-need-help
‘I bought cannabis oil for my friend’. https://www.bbc.co.uk/news/av/health-44793886/towie-star-i-bought-cannabis-oil-for-my-friend
Boseley, S. (Jun 2019). Families create buyers club for cut-price cystic fibrosis drug. The Guardian. Retrieved from https://www.theguardian.com/society/2019/jun/04/families-create-buyers-club-for-cut-price-cystic-fibrosis-drug
Delancer, R. (Oct 2016). Big Pharma CEO: ‘We’re in Business of Shareholder Profit, Not Helping The Sick’. Political Dig. Retrieved from https://politicaldig.com/big-pharma-ceo-says-profits-over-people/
Gallagher, J. (Aug 2019). ‘Lack of evidence’ holding back cannabis medicines. BBC. Retrieved from https://www.bbc.co.uk/news/health-49279679
NHS (Nov 2018). Medical cannabis (and cannabis oils). Retrieved from https://www.nhs.uk/conditions/medical-cannabis/
NICE (Aug 2019). NICE draft guidance and NHS England review highlight need for more research on cannabis-based medicinal products. Retrieved from https://www.nice.org.uk/news/article/nice-draft-guidance-and-nhs-england-review-highlight-need-for-more-research-on-cannabis-based-medicinal-products
Reynolds, P. (Oct 2018). Cannabis Advocates Really Need To Stop Accusing Doctors Of Being Bribed By Pharmaceutical Companies. Clear UK – Cannabis Law Reform. Retrieved from https://www.clear-uk.org/cannabis-advocates-really-need-to-stop-accusing-doctors-of-being-bribed-by-pharmaceutical-companies/
Wikipedia (Sep 2019). GW Pharmaceuticals. https://en.wikipedia.org/wiki/GW_Pharmaceuticals
Wong, S., Wilens, T. (Nov 2017). Medical Cannabinoids in Children and Adolescents: A Systematic Review. Pediatrics – Official Journal of the American Academy of Pediatrics. Retrieved from https://pediatrics.aappublications.org/content/140/5/e20171818