Little doubt medicinal cannabis will be legalised, but it needs to be dealt with urgently

Billy Caldwell has spent a large chunk of his life being, in effect, a refugee. Forced to leave home because of a lack of services to effectively treat his condition. At just 11 years old this fighter from Castlederg, Co Tyrone has a severe life threatening form of epilepsy called intractable epilepsy. He is also a status epileptic.

His mother Charlotte has fought hard for her son since she was told by the doctor he would not survive when he was just six months old. He has already spent two years of his life in Chicago receiving intense physiotherapy to help with his condition. Billy has life threatening seizures in his sleep and therefore the first thing Charlotte does when she wakes up beside her son each morning, is not to set out his clothes or make his breakfast – she checks that he is still alive. Once she can confirm that, she thanks God that she will have at least one more day with her son.

A couple of months ago Billy and his mum flew out to Los Angeles. The doctors in California prescribed him cannabis oil (CBD) to help prevent seizures after a number of other medicines failed to have any effect. Billy receives just 3 small drops of oil in the morning and 3 in the evening. The change in Billy was immediate. Whereas before he had suffered 7-9 life threatening seizures per week post-cannabis he had just 1 in a 14 day period.

Billy is in the US to receive what his mother describes as an ‘invasive’ form of brain surgery. However he has to remain on his medication – the CBD – for at least two years after the surgery. Of course medicinal cannabis is not legally available in Ireland, north or south. Therefore unless government can change the laws pertaining to medicinal cannabis quickly, Billy and his mother are condemned to become what Charlotte described to me as ‘cannabis refugees’ for the next two years. Separated from their family and friends in rural Tyrone and plunged into another financial crisis.

How can anyone argue against Billy being prescribed a few tiny drops of CBD each day? You cannot. Slowly but surely legislators across the world are coming to the realisation that it might actually be better for sufferers of conditions such as Multiple Sclerosis, Epilepsy, Chron’s disease and chronic pain to be prescribed medicinal cannabis than potentially addictive and damaging painkillers.

The tectonic plates of government policy on cannabis are moving most rapidly in the USA. Cannabis for medicinal purposes is now legal in 29 US states. President Barack Obama has taken a more liberal position on the issue signalling that ‘We should follow the science not the ideology’

Last week the Dáil in Dublin voted to progress a Bill on Medicinal Cannabis to Committee Stage and the Government, to its credit, did not vote it down. A cross party group of MPs have also said it should be legalised for medicinal use after carrying out a 7 month inquiry.

Medicinal cannabis is another taboo in a long list of taboos that society needs to bury. People are rightly getting angry.

When six year old Ava Twomey had a violent epileptic seizure early one morning in November it was the final straw for her mother. Vera Twomey immediately set out to walk 150 miles from the remote County Cork village of Aghabullogue to the Dáil to protest for a change in the law. She believes that THC, another component of cannabis would save her daughter’s life.

The Gibson family from Newtownards whose daughter Sophie suffers from Dravet syndrome have started a petition with the UK Government and Parliament to legalise CBD oil. Sophie also suffers from seizures and similarly her parents Danielle and Darren are fearful for her life.

Charlotte Caldwell now intends to ask Stormont to help families lead a campaign that will see medicinal cannabis being made available to those that need it. This has the potential to not only provide relief for patients but much needed respite for family members.

Drug classification is of course a ‘reserved’ matter. In other words Westminster makes the decisions but the devolution of this area is not ruled out as conclusively as ‘excepted’ matters such as Defence. However the Executive should still look at this area more closely and help provide a solution to the dilemma of many patients who are suffering needlessly. If any parent were in the same position as Charlotte we would also be calling for medicinal cannabis to be legalised. We need a more compassionate policy when it comes to medicinal cannabis.

This Friday Billy’s brother Kyle will leave his home and he will start to run. Kyle will carry a weight the equivalent to his sibling on his back as he makes his way across the north over 13 days. He will travel 300 miles through many of our towns to highlight the plight of his brother halfway across the world in California. Charlotte Caldwell wants to bring her son home again as soon as possible. That will depend on how quickly legislators can come up with a solution to this dilemma for both her and many other families that have to suffer needlessly.

I have no doubt that medicinal cannabis will be legalised in both Ireland and Britain but there is an urgency that needs to be emphasised. Just one of these epileptic fits can seriously disable or kill a child that suffers from the most serious of these conditions. The sooner the Assembly and the Executive gets behind these families the better.

Links for those who wish to donate to the Keep Billy Alive fund

 

 

  • Katyusha

    Hi Daithi.
    Can you add the link for the donation fund?

  • David McCann

    That was our fault not his, link has been updated

  • Declan Doyle

    Excellent piece Daithi, heartbreaking. I wonder, considering how drug lords seem to have no problems smuggling in their “stuff” from all over the world; would it not be possible to do likewise with the cannibis drops? Would the cops turn a blind eye?

  • Korhomme

    Cannabis oil is available on amazon.com, though I’m not sure if they would deliver it here, or if the Excise would interfere.

  • Korhomme

    Not so long ago, Big Pharma seemed to have all the answers. Pills for everything, even if they didn’t always work so well.

    More recently, an old-fashioned treatment for epilepsy in very young kids has made a come-back. If they are fed a high fat or ketogenic diet, seizures can be controlled or even eliminated in some. It may even be possible to revert to a ‘normal’ diet without ill effects after some time.

    Likewise, cannabis oil does have a good record in ‘older’ people in the control of symptoms which are ‘resistant’ to conventional treatments.

    But, so often, pressure for such ‘alternative’ treatments is met with official obfuscation and obstruction, and overcoming this can be very tiresome and time-consuming.

    So, just for once, perhaps the Executive and Assembly could stop their childish play acting, get the finger out, and do something small but very useful.

  • Kevin Breslin

    Dea-lá a thabhairt duit.

    I’d largely be supportive of medicinal cannabis … we already have medicinal heroin in the form of diamorphine.

    I would wonder if there are logistical problems in terms of procurement or if there is a medical authority consensus that it is not the best (whether results driven or cost effectiveness) form of treatment or pain relief.

  • Kevin Breslin

    https://www.justgiving.com/campaigns/charity/just4children/keepbillyalive2

    Just in case people struggled to find it in a wall of text.

  • johnny lately

    I dont think much of the cannabis thats knocking about this place is smuggled into this country Declan most of it is home grown and If you have access to cannabis then you can make the oil yourself theres lots of how to’s on the likes of you tube and various websites and whats needed is easily available in Northern Ireland but then again thats the very problem why Cannabis is illegal in the first place its easily grown at home, no need to for government taxes and no need to pay over inflated prices for a product thats easily made by just about anyone.

  • Brendan Heading

    Good to see you on Slugger, Daithi.

    Are there any actual peer-reviewed studies into the benefits of cannabis oil ? An anecdotal account isn’t likely to cut it.

  • Brendan Heading

    But, so often, pressure for such ‘alternative’ treatments is met with official obfuscation and obstruction, and overcoming this can be very tiresome and time-consuming.

    This is because 99% of the alternative treatments are a scam and the government has a responsibility

    The placebo effect is very real; that’s why there’s a need for proper clinical studies under controlled circumstances, conducted by professionals.

    I’ve no problem with cannabis oil being legal, perhaps as a pharmacy only medicine, provided it is safe. I’ve more difficulty with it being advertised as medicine or prescribed on the NHS in the absence of evidence that it works.

  • johnny lately

    If the cannabis plant or its oil have no medicinal use other than getting you high, why does the American government own a patent on marijuana as a medical application ?

  • Good to see! It can’t happen quick enough. I’ve seen it work well with so many diverse ailments with my own eyes.

  • Korhomme

    That’s fair enough. BTW, the NHS still funds homeopathy.

  • im not at laptop but you could start with Raphael Mechoulam who started proper research in 70s. Check out the Barnes report published for the APPG on cannabis recently.

  • “President Barack Obama has taken a more liberal position on the issue signalling that ‘We should follow the science not the ideology’”

    I would have appreciated some attempt at science in this post rather than what we were actually presented with.

    Because it is not an argument for the legalisation of medicinal cannabis.

    And beware of following Peter Hain’s homeopathetic philosophy…

  • Declan Doyle

    Are you actually intellectually capable of professing your view without the need for excessive links? Talk about trying to tie an issue up in knots. If u have no confidence in your own theoretical reasoning, or if you have no aptitude in creating a self sustaining argument can you not just fnook off please.

    The science is out there, just google it. The above gives a human view to try and get past copy and paste refusniks.

  • Benji

    Tell Billy’s mom that CBD is already legal in ROI, as Minister for Health Simon Harris said in the parliament last week: “CBD is not controlled under the Misuse of Drugs Acts.” CBD oil is easy to obtain in ROI, however some doubts remain about the potency, provenance and appropriate dosage of the available products. The bill in Dublin sought to make full spectrum medicinal cannabis legally available for general prescription by qualified medical personnel.

    http://oireachtasdebates.oireachtas.ie/debates%20authoring/debateswebpack.nsf/takes/dail2016120100056?opendocument

  • Brendan Heading

    A travesty, if so.

  • Brendan Heading

    Just because someone patents something doesn’t mean that it will work.

  • Korhomme

    The Royal London Homeopathic Hospital has had a makeover, and is now the Royal London Hospital for Integrated Medicine. But old traditions, as approved by Prince Charles, die hard:

    http://www.uclh.nhs.uk/ourservices/ourhospitals/rlhim/Pages/Home.aspx