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AN OIREACHTAS COMMITTEE on health has heard that the potential benefits of cannabis-based treatments offers a “tantalising new horizon” for epilepsy sufferers.
A session this morning on the examination of the merits of the licensing of medical cannabinoids also heard the case of a young girl whose rate of seizures dropped dramatically when treated with a high cannabidiol (CBD) cannabis extract.
Addressing the committee was consultant neurologist at St James’s Hospital, Dr Colin Doherty, the chief executive of the Health Products Regulatory Authority (HPRA), Lorraine Nolan, and a parent of an epilepsy sufferer, Vera Twomey.
Vera began by passing around a photo of her daughter, Ava, who suffers from an extremely rare form of epilepsy called Dravet Syndrome.
Vera has petitioned the Minister for Health to take action on the issue, recently pledging to walk from Cork to Dublin to raise awareness for her daughter’s case. Simon Harris said he would look into the matter further, as a result.
Ava’s condition was extremely severe, often resulting in multiple seizures of all types each day.
“She has gone through eleven different forms of medication,” Vera told the committee. “All of them were unsuccessful in treating her seizures. The nature of Dravet is that it breaks through the medication.”
With Ava’s conditioning worsening, her family turned to Charlotte’s Web, described as a purer form of cannabis oil with high levels of CBD.
She had a reduction of around 80-90% in the first month, according to Vera. “She only had seven seizures in the whole month. Before, she could have had seven seizures in two hours.”
CBD has had a profound effect on Ava, but Vera is pushing for access for such treatments to be expanded upon.
“We want the very best for Ava. I have seen that this is working.
We feel like we can’t talk to our doctor. I’m sure if the doctor could prescribe it, they could be more involved. We want the Government to come forward and help us.
“Encouraging but not definitive”
Dr Doherty told the committee that there was growing evidence for the efficacy of CBD in cases of epilepsy. While some forms of CBD are available to purchase in Ireland, they are not regulated as a medicine and cannot be prescribed by a doctor.
He pointed to forms of CBD currently undergoing clinical trials in epilepsy, such as Epidiolex, which has seen one in ten patients becoming seizure free, as well as a sharp reduction in seizures for half of the people treated with it.
Around a third of epilepsy sufferers cannot control their condition, the consultant neurologist said, and “many have reached the end of the line” having tried all available treatments.
“Studies so far are encouraging but not definitive,” he said. “It won’t work for everyone, but for those that it does work for it could be life saving.”
More scientific evidence would be required before doctors became comfortable prescribing CBD if they were to be approved by regulators, he added.
Lack of evidence
The main barrier to the licensing of medicinal cannabis was described as the lack of clinical evidence of its long-term efficacy, as well as the lack of data on its long-term side effects.
The HPRA’s Lorraine Nolan told the committee that a lack of scientific evidence was the “underlying factor” as to why CBD is not yet available as a prescribed medicine.
For medicines to be be accessed by patients through their doctors, an assurance of rigorous scientific assessment must be provided. This is not yet the case for many forms of medicinal cannabis.
In other parts of the world where medicinal cannabis has been legalised, they have been “demand-led” and necessitated a “relaxation of drug laws”, Nolan said.
Doherty agreed, adding that “scientific evidence should not be open to interpretation”. If it was approved by regulators for use in patients without appropriate evidence of long-term safety, doctors may not be willing to prescribe it.
“No one wins if something is pushed through that a doctor is not comfortable prescribing,” he said.
The presence of the psychoactive THC (tetrahydrocannabinol) in many cannabis extracts is also a worry in terms of medicinal cannabis, because of its side effects.
“There are reasons to be optimistic about some anecdotal reporting of CBD effectiveness, but ones with high levels of THC should be worried about,” Doherty pointed out.
Nolan also said that the Department of Health had tasked the HPRA with reviewing the availability of authorised medicines containing cannabis and a review of the ongoing clinical research in the area. Their results are expected to be given by the end of January.
Cannabis bill
Speaking at the committee, Anti-Austerity Alliance/People Before Profit TD Gino Kenny discussed a bill to be brought before the Dáil next week, which calls for cannabis use to be permitted for sufferers of illnesses such as Multiple Sclerosis, cancer and Dravet syndrome.
“The more I get to know about this medicine, the more I’m fascinated by its medicinal purposes,” he said. “Shockingly, people are criminalised for it.
These are ordinary citizens that have been in very difficult circumstances and traditional medicine has not worked for them. They should not be stigmatised. Hopefully the bill which I will put forward will pave the way for medicinal cannabis.
Also addressing the committee was Fine Gael TD Kate O’Connell, who is a pharmacist. She indicated that many within the party are quite open to medicinal cannabis coming into effect in Ireland, and that Minister for Health, Simon Harris, was one of them. She did, however, caution against hasty action on the issue.
“I’d always be anti-quick authorisation, anti-fast tracking. We’d be giving these to children. We need to be mindful of the side effects,” she added.
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Why stop at medicinal? We should all be allowed to enjoy it, go the whole hog legalise Colorado style.
Absolutely. It’s incomprehensible that marijuana is still illegal.
cannabis thc is know to cure cancer as well somebody is telling big lies and I bet its the establishment working on behalf of the pharma corporations.legalize cannabis now.dont let big pharma take control of this plant.
@Keith Mitchell: Colorado has seen a massive increase in crime since it legalised pot. The numbers just keep getting worse. Over the first four months of 2016,crime in Denver is up 10% over the same period from 2015. 10 of the last 15 murders in Arapahoe County alone are down to pot. Plus http://denver.cbslocal.com/2015/09/20/smart-colorado-hearing-from-hundreds-hundreds-of-parents-about-pot-use/
I suffer chronic pain and found pot in all it’s forms to be useless but would still like to see if a product with CDB only would work for some people provided it did not cause bigger problems in the long term.
Which cancer? Cancer isn’t a single disease and honestly it’s is SO f***ing insulting to the thousands of researchers that spend their lives focusing on trying to find a way to beat each different one when people make blanket statements like that.
Not to mention all the oncologists and medical staff that spend their lives treating those unfortunate enough to be afflicted. Do you honestly believe all those people are psychopaths? That they have no problem just letting people die because of some shadowy conglomerate of “big pharma”?
You know what, forget it! If you’re so ill informed re: cancer research and how it’s even funded I can’t change your opinion. But it makes me so mad on behalf of those people that are actually at the forefront of that battle daily!
@Bobby Phelan: You really should listen to the people doing the actual research
@Tricia Golden: watch” run from the cure” make up your own mind.tricia look at why this mother is on the journal to day people that thought there was no fix for that type of epilepsy have now discovered that a fooking plant that’s banned all over the world cannabis was helping epilepsy sufferers why tricia why is it banned.instead of running your mouth off maybe the professionals got it wrong maybe there looking in the wrong place.
@Bobby Phelan: Yeah, the people that have spent their lives researching are “looking in the wrong place” and a You Tube video is more accurate than years of medical research.
Sheesh!
@Bobby Phelan: cannabis is not proven to cure cancer in humans.
Many things kill cancer cells. The problem is that they usually kill normal cells as well. If you want to kill cancer by drinking bleach ( which *does* kill cancer ), be my guest. And, for the record, I’m pro- medical cannabis. That doesn’t mean that I’m irrational.
@Tricia Golden:This case for a medical use of cannabis is being hijacked by the pot heads and distracting from the medical use which as you rightly keep pointing out needs to be tested rigorously so that there are no disasters in the long term. If I had a sick child and felt that cannabis was a cure then I would head off to Amsterdam and put the thing to the test. Giving false hope to sick people is a terrible thing to do but individuals are free to take pot or go to Lourdes or whatever once they understand the risks and don’t subject others to those risks
@Bobby Phelan: Please. The pharma companies would be all over this if it was legal as they could sell medicinal-grade marijuana and make a fortune.
If I was sick I’d want mine to come from pharmaceutical clean-room conditions rather than sprayed with who knows what to have to it grow rapidly for quick turnover (because it’s illegal) like they do now.
@MackPilon: Reefer Madness?
@Eucrid: you mean it’s not proven that it does not cure cancer in humans.
Go back under your rock
@Niamh Kenneally: one word “patent” you cant patent a plant = no profit.
this lady has raised so much awareness on this matter , which has taken her away from her sick daughter for long periods of time . she’s fighting for her child and for all other children out there who are suffering . full respect to her . her daughter is proof that this works .. it should be legalised ..
@Suzie Sunshine: With all due respect to her she’s in a very very long line of people who have made this an issue with governments around the world, she’s actually a very late to the awareness efforts. Watch and share this CNN article, it’s about a child that was effectively sent home from hospital to die but as a last resort the child’s parents decided to give CBD a go, the results are miraculous. https://m.youtube.com/watch?v=Z3IMfIQ_K6U
@Suzie Sunshine: Agree 100% well said Suzie
Crypto .. I never said that she was the first person or the only person to raise this issue …
If a ministers child was in danger of dying because of epilespy. this harmless non toxic substance would be legalised in an afternoon
How on earth is this even a political question? Surely this should be decided by health care professionals only.
Because, as the CEO of the HPRA said it required a relaxation of drug laws to introduce these therapies. They don’t have the scientific evidence needed to back up their claims yet. This drug licensing process can take years and loads of trials to prove their worth. If the makers of these cannabis products focused on pain relieving properties, rather than suggesting cures for certain illnesses, I think they would be licenced sooner and would be assessed in a different way. This lady also needs to canvass the European Medicines Agency, who are the only ones that can bring about real change in the pharma industry.
Free the weed…….
CANNIBIS IS NOT A POISON ALL PHARMA PRODUCE ARE POISONS PHARMA COMPANIES DICTATE POLICY IN IRELAND hospidal admissions down 22percent in Colorado Fact
@Upowthat Burke:
You would get more credibility with the point you are trying to get across if you didn’t make such blindingly inaccurate statements.
People really need to wake themselves up in regards to cannabis. Find out about our endocannabinoid system, our bodies are actually designed to receive cannabis and most of us get our first dose cannabinoids from our mothers breast. Research has been made illegal on this plant for decades for a very good reason, big pharma. In more recent years research is showing that cannabis cures or prevents many different cancers, treat very effectively parkinsons, MS, diabetes, depression, anxiety and many more ailments. I could go on here but all I want to do is try make some people aware of the power of this natural remedy, it’s not what they told you it is, yes they have lied to you all in the pursuit of profit. Search for benifits of CBD and RSO
Why do all the doctors, nurses and scientists around the world opt for science based “big pharma” treatments when ill? Do you really think they are so caught up in your tin foil hat conspiracy that they are prepared to sacrifice their own lives and the lives of their loved ones and die from cancer just to protect corporate interests? Perhaps there isn’t a conspiracy. Perhaps scientists are more cautious than jumping at anecdotes. Perhaps doctors truly want to be sure that long term use of cannabinoids in children is safe. And btw big pharma will also make money out of cannabis anyway.
There is no conspiracy. Cannabis doesn’t cure everything. Yes, for certain conditions such as chronic pain and epilepsy the research is encouraging. It is terrible for a parent to have to wait.
@John B: @John B: Tell me about it. My son, who is now 19, suffers with chronic epilepsy and has trialled about 11/12 drugs to no effect. He ended up even dropping out of school he was so exhausted from meds and having so many seizures every day. We were trying to source cannabinoid for years and finally got it in gel form last year, which was easy for him to use. Within two days the seizure load dropped by two thirds! He is now back in school and working hard towards a leaving cert. He wishes he had never been given pharmaceuticals. CBDs, diet and certain supplements should have been the first options.
This stuff is miraculous for his condition. It is expensive -as are the supplements. I am shocked how little reference there is to the awful side effects of AED drugs. Cannabinoisd seems so benign, and easy on the system. He looks and says he feels brighter and clearer on it. Everything has improved.
@John B: The huge problem here is patents. We keep hearing about the so called lack of “scientific evidence”. Hundreds of thousands, even millions of people can experience first hand benefits and cures from CBD, but it is all dismissed as anecdotal. A few hundred people can complete laboratory trials which are peer reviewed and it is then considered medical science. (even though sometimes this “”proof” is reconsidered later for a variety of reasons). So much for medical science!!. Where do medical trials come from? The answer unfortunately is pretty much always from Pharma funded research. So here is the problem that the media never tell us about. It’s just an uncomfortable truth about anything that is not mainstream (ie pharma driven) in medicine. Irrespective of what you may read in the news, Pharma really have little interest in Cannabinoids because of the patents issue. They cant patent anything that comes from nature, so when they cant patent it, they can’t make the 10,000′s of % profit that they have come to expect as their entitlement. They have tried to mimic synthetically the benefits of Cannabinoid compounds over the years (as they can then patent those) but it would appear that the benefits are only found in actual real grown Cannabinoids. At government level in most countries now, – from pressure from the public -, there is a grudging acceptance of benefits from Cannabinoids. However the establishment wont relinquish their hold easily. The same old mantra of more trials needed is just a stalling tactic, because the reality is that we are never going to get those trails, because the system is setup wrong. How can we expect Pharma to fund trials to prove the benefits of something they have little interest in?? Nobody else funds trials in the western world. Never forget that back in the day, Pharma made sure Cannabis was outlawed as it was seen as a threat to their interests. The paper mills also were involved as it was seen as a threat to them. Some facts: Cannabis is an excellent source of paper, rope clothes, protein among other things and it’s absolutely crazy that we have outlawed this very useful plant from everyday use. In a time of environmental concerns, we could avoid all the tree felling for paper by growing hemp instead. It lasts twice as long as wood paper by the way. Cannabis has so many medicinal health benefits as was used as a herb for centuries until our governments in their infinite wisdom outlawed it. There is pretty much no health challenge or condition that will not benefit from Cannabinoids. Unlike modern drugs, there are no long term dangerous effects. Again raising this as a concern is just a stalling tactic. Whilst alcohol and cigarettes are legal even though they are arguably much more dangerous, especially long term. But lets not make a fuss about that because of the taxes generated. I would hope that we will legalize Cannabis so that those the need it can enjoy the full benefits it offers. I would also hope that history will show the foolishness of outlawing this wonderful herb given to us by our Creator for our benefit.
Ian Oh: hundreds, thousands, millions or even billions of anecdotes are still anecdotes. Unless you have randomized controlled trials, preferably double blinded (ie neither patient nor investigator know whether they are getting the drug or placebo) then it does not count as gold standard evidence. This is the high standard that science holds itself to, this ensures we truly know the benefits and side effects of a new treatment. And yes modern medicine changes its mind: as knowledge advances, thus it changes, this is not a bad thing, this is the whole point of science.
I do hope that cannabinoids come to fruition for epilepsy and chronic pain, it would be fantastic. But seriously, if your baby had meningitis, would you be satisfied if your physician asked you to get your child to lick some fungus (penicillin was thus discovered) and hope that the correct dose and side effects would hold true, or would you prefer that your physician provides the correct dose, properly measured which has benefit and side effects measured? Of course not. Epilepsy should be no different.
@John B: @John B: That is all true and you make valid points. The problem still is the way the system is setup. The gold standard is medicine is all well and good, but when it is used to stop something useful getting into the hands of those that desperately need it, we have to admit that we have a problem. ie. the system is broken, doesn’t work and lets people down. These people do not want to be doing anything illegal, so they are asking (quite correctly in my humble opinion) for it to be legalized. It looks like mainstream use of Cannabis is only going to happen outside of Pharma’s influence. So if it were decriminalized, the anecdotal experiences and knowledge used in administering it already (we cant deny that it is already being used anyway. We’ve just driven it underground) can be pooled and practitioners who currently are prescribing it secretly can offer their services to those that need it in an open and transparent manner. The fear of wrong dosage is way over hyped in my opinion. Yes modern drugs have very specific dosages and for very good reason. To pass laboratory toxicology trials, they must pass MR50 test which finds the dosage that exactly 50% of the mice populations they are testing it on dies, therefore they must be liver toxic by design to achieve this. The same lethal thresholds do not exist with pure natural cannabinoids. Exaggerating the precautions of dosage is akin to worrying that your child might have some side effects from eating too much cabbage, carrots, potatoes or whatever. Cannabis is a natural plant found in nature. Don’t tell me that any parents are going to throw all caution to the wind if and when they are giving it to their child. There are no real valid excuses to legalizing cannabis for medicinal use that hold water. With all the shortcomings of the so called medicinal proof, if one of my children had a health need that I thought could be helped by cannibas and I could get my hands on it, I would definitely give it. It goes without saying that research and caution are well advised.
@Ian Oh:
My son has lived this actuality out over the past 6 years, it does all seem pretty clear…shockingly so.
@@NualaFenton: great news nualafenton.People haven’t got the time to be waiting for slow government to act in the interest of people.Trials have being going on for years but some people prefer to wait until its clinically proven by that time will only get a water downed substance.Legalize for everybody is the only way.
Big few months ahead for medical cannabis in Ireland with various things happening. Have to say it does look like some sort of change is on the horizon though.
Well done Vera and all the other people pushing for reform!
Okay people, let’s remember what happens when drugs aren’t properly researched before being administered.
Many people, myself included really WANT this to be successful but there have been too many incidences where approval has been fast-tracked and people have suffered! The most famous being Thalidomide (and no I’m not saynig the results would be the same I’m just urging caution).
Something can look REALLY promising in small trials or with individuals and be catastrophic when applied large scale!
And let’s also bear in mind that this isn’t about legalising cannabis for personal use (something I support), it’s about creating a therapeutic drug and potentially administering to children.
@Tricia Golden:
Now now Tricia. You must know that a huge amount of people on the journal don’t like to deal with the facts and prefer the populist approach.
@ Tricia Do you think the Americans, Canadians, Portuguese etc have all legalised cannabis without doing any research? It’s been a success in these countries in many different ways. Can’t the Irish government examine these countries to try and decide what route is the best for us?
@John Doe: You CLEARLY didn’t read the last line of my comment.
We are NOT talking about legalising weed for personal use.
We’re discussing using a derivative of cannabis to create a therapeutic drug that could then be administered to already very sick people.
Can you IMAGINE what would happen if it turned out that is wasn’t the cure all people assumed it was?
There is a reason we have strict rules around approving new drugs.
Brown envelopes is the reason we have strict laws about the legalisation of cannabis. And I never mentioned whether it should be legalised for personal use or just medicinally. Some parts of the US have legalised medicinal use only, I suggest we should examine the different laws in the different countries and decide from there what route would be best.. but something needs to be done, and spending more yrs doing tests already carried out in these countries like you’re suggesting isn’t the answer in my opinion.
@Tricia Golden:
Basically saying that the Irish medical profession is the best in the world. I wouldn’t trust them as far as I could throw them. Their greed is not much removed from their American counterparts. All they want to do is prescribe expensive and dangerous drugs to their patients. It is in their interest to shoot cannabis down to line their pockets. There hasn’t been a fatality caused by cannabis ever.
@John Doe:
Totally agreed. Check out Dr Leister Grinspoon and Dr. Raphael Mechoulam from Israel. These people researched this topic for over 50 years. How much research has both the Irish Government and the Irish Medical Profession did they do.
Answer: NONE.
@brendan mason why? Doctors don’t get a % of sales, contrary to whatever delusion you might currently be experiencing
@George Salter:
Why is it so expensive to get any medical treatment or see a doctor/dentist in Ireland. We’re second only to USA in expensive medical bills.There are doctors so well off that they fly helicopters to their clinics. Amazing for a small country. Look at the last line in my previous comment, “How much research has both the Irish Government and the Irish Medical Profession did they do with cannabis?. Yet the seem to know enough to reject it.
@ George It was reported in june by the Irish times and Rte that the pharmaceutical industry had made payments totalling €6.8m to doctors.. they might not get a direct % of sales but they certainly get paid to back certain drugs. They don’t get paid anything to promote cannabis and never will hence the reason the majority of them avoid the question
And I’m going to dispute that assertion. Both my parents are medical professionals, (retired btw). So, I speak with a little bit of knowledge. If you think that getting a box of 10 pens and a post-it notepad marked ‘Viagra” makes you a paid/bribed employee, then so be it. Equally, a pharma company sponsoring a conference doesn’t imply collusion. If my family had got some hard cash from this alleged payment, I’d agree. But, it didn’t happen. RTE and the IT are not always right btw.
@Tricia Golden: its cannabis tricia its not some type of hard drug your taking about.Tricia pharmaceutical dont want it legalized do u not under stand that it has hugh potential to do serious damage to their chemical drugs industry.
@Tricia Golden: its being done already spain is testing with last two years with very positive results you just have to research its all hush hush the damage to pharmaceutical would be big.Profit is the name of the game try not make the mistake that they care.Remember ff fg leave people die on hospital trollys in this country and homeless die out on the streets to me they have no morals only profit driven.
@ George So your saying the Irish times and Rte both made up the €6.8m figure? And the reason you know this is because your parents are both doctors and they obviously showed you every penny they made and where it came from? Pens and post it notes don’t cost millions even if every doctor in Ireland got a lifetime supply of both it wouldn’t come near the 6.8 million. So because you don’t think your parents got any cash doesn’t mean no doctors in Ireland got any. The world doesn’t revolve around you and your parents.
Canalise Legabis!
When you have clergy loving donkeys from FF FG LAB we will be waiting a long time to free the plant that is gifted by God. Our politicians know more then any expert on cannabis. That includes the likes of Leister Grinspoon etc. Prohibition thankfully is on the way out. California Nevada Maine and Massachusetts have legalised. Roll on the domino effect.
Cool mom
Cool mom? Nope. She is a desperate mom who is at the end of her rope trying to help her very sick daughter
Nick please tell what is inaccurate you cannot face the facts. Wake up idiot
Why ‘Dr Doherty and then ‘Vera’?
This has been made illegal because of its medicinal propertys it was big pharma that combined to outlaw it in the first place . It was I think Richard Nixon that started the war on drugs because of lobbying from paid minnions of big pharma . Alcohol and tobacco are much much worse drugs than Marjuna and have killed millions in there time. The facts are you cannot od from smoking marjuana . Its medicinal purposes are incredible it cures almost every desise the makes your skin clearer . The simple fact is doctors are paid to sell drugs and politicans are bribed to keep it illagal .
There is no need for a big research on this subject because it has already been carried out all over the states . I have researched the subject and know if I knew what I know now my father would NOT have been a fallen victim of cancer 4 years ago . CANNABIS CURES CANCER !!!!!
The US government owns forthcoming patents on medicinal cannabis products. Expect it to become legal soon. Good thing too. Why the religious fervour against it still is baffling.
Cannabis oil has even been said to have a positive effect on cancer cells, its secret is it can make damage cells commit suicide leaving healthy cells alone?
@Alois Irlmaier: cannabis thc is the one that fights cancer i bet the big pharmaceutical companies are worried now and we also bet there is going to be a big campaign to discredit cannabis medicine.Alcohol industry will be sweating as well all drink is loaded with chemicals now days.People want more natural stuff these days.
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