Tag Archives: medicinal cannabis

Via Mercier Press:

When Vera Twomey’s daughter Ava was diagnosed with Dravet Syndrome, a rare form of epilepsy that causes multiple seizures a day, the family’s life was thrown into chaos. Where they hoped to find treatment and support in the medical system, they found only frustration. The only medication that would have any effect on Ava’s condition is a form of medicinal cannabis that was unavailable in Ireland.

Thus began the family’s fight to alleviate their daughter’s suffering and give her a chance at life. Faced with an intransigent system and political establishment, Vera’s campaign eventually culminated in her decision to walk from Cork to Leinster House in Dublin in protest to ask health minister Simon Harris for help in person.

For Ava tells the story of the campaign for Ava’s medication and the family’s move to the Netherlands in order to legally access the medication that would save her life. It also pays tribute to the people who helped Vera achieve her goal. Above all, this is a moving story about the lengths a parent will go to for their child’s health and happiness.

In fairness.

For Ava by Vera Twomey (Mercier Press)

Previously: Vera Twomey on Broadsheet

From top: The Transvaal Pharmacy in The Hague, Netherlands; Vera Twomey and Luke Ming Flanagan MEP

This morning, Taoiseach Leo Varadkar re-affirmed the position held recently by his Minister for  Health Simon Harris that the…

“…lack of availability of cannabis products in Ireland remains the most critical barrier to full implementation” of the [medicinal cannabis access programme] scheme”.

Mr Harris had added:

“Full establishment is dependent on the commercial operators making these products available in Ireland.”

Veteran legalise cannabis campaigner Luke ‘Ming Flanagan MEP responds:

This statement does not add up. The experience of Vera Twomey has not been that there is a problem of availability. The problem is one of importation and delivery.

As most people know Vera Twomey has acquired a license for medical cannabis for her daughter Ava. In order for Vera to get the cannabis based medicine either herself or her husband must travel six times per year to the Transvaal clinic in The Hague.

The journey involves an early morning flight from Cork to Amsterdam followed by a train journey to their destination city. The schedules mean hanging around for hours on end waiting for the return flight home.

Not the end of the world you might say. True. Far better than having no access to the medicine. Very true. Are these journey really necessary though? Definitely not. Surely the medicine can be delivered to their local pharmacy.

Well anyone who knows Vera will know that if there is a route to make this happen then she will find it.

I regularly talk to Vera on the phone. I got a phone call from her in the last fortnight. She rang me to inform me that there is already someone getting delivery to the Island of Ireland from the Transvaal clinic in The Hague.

As always with Vera she used this information to unlock a solution to her own particular situation. She established that a pharmaceutical distribution company are already bringing it here. I say here rather loosely. It is being delivered to Northern Ireland.

She has contacted the company in question and asked could they the provide the same service into the Republic of Ireland. No problem was the answer. However it would have to be agreed to by the HSE. Simple. Well so it should be.

However rather than helping her they are in fact stonewalling her. She is waiting and waiting to hear what action the HSE have taken to facilitate the medicines delivery.

Why does the state allow this to happen?

Why when there is simple solution at hand do the HSE not act upon it?

If the people involved in taking care of our health administration don’t care about the well being of those they get paid to take care of then they shouldn’t be let near the job.

I have three daughters myself. As anyone knows raising children is hard work. When one parent has to go away for the day it becomes a little bit more challenging. When one has a child with special needs that challenge is even greater. The state needs to get its act together now.

Deliver the medicine. It’s not rocket science. Minister Harris needs to stop hiding behind the “lack of availability”. It’s simple not true.’

Luke ‘Ming’ Flanagan

Previously: Vera Twomey on Broadsheet

A man in possession of cannabis that he used to treat the symptoms of his epilepsy has been fined €100.

I find it hard to believe that we are, in Ireland, still so far behind the times on this matter.

The medical and therapeutic applications of cannabis are well-known internationally. There are a handful of conditions for which cannabis appears to be the only effective treatment.

Why are we keeping citizens of Ireland from accessing safe and regulated medicinal cannabis?

I would like to see my representatives get out in front of this issue, rather than towing the line on something that any reasonable person can see makes absolutely no sense.

The prohibition of cannabis is a waste of taxpayers’ money, a drain on Garda time and resources, a strain on our already bulging courtrooms and (the crux of the matter) a wholly immoral exercise.

Stephen Maguire,
Dublin 14.

Cannabis and the law (The Irish Times letters page)

Pic: Wendy McCormick

Related: Man in possession of cannabis for epilepsy treatment fined €100 (Gordon Deegan, The Irish Times)

Pic: Medical Xpress

Kenny Tynan

On Monday

Kenny Tynan, who has a brain tumour and obtained a licence for cannabis oil but has been told his cost will not be reimbursed, wrote on his FB page:

“”d like to thank Prof. Micheal Barry of St James for my wonderful totally avoidable seizure last night. It was traumatic for my wife and my 11 yr old son.

Traumatic in the sense that at any time they could be fatal for me. I wouldn’t mind but I had taken my conventional anti convulsant about 40 mins before I seized. Goes to show how well they are working.

Waiting over 3 weeks for a response to an appeal that blew his reasons for denial of reimbursement out of the water.

You would think the money was coming out of his own pocket. Just over a month left on my licence too…’

Yesterday, Kenny wrote:

“An Angel has stepped forward last minute and offered to pay for my medicinal cannabis. Thank you heavenly Father for putting this person in my path. The world works in mysterious ways. Namaste.’

Kenny Tyanan (Facebook)

Johnny Keenan writes:

This is indeed a great day for Kenny. That is 100% well deserved. Never underestimate what good people are watching and listening from the sidelines and want to make a substantial difference when and where they can.

However its another dark day for Simon Harris Fine Gael government and more importantly thousands of other Irish citizens who need and want the right to use medical cannabis.

A right that is afforded to most of our brothers and sisters across the western world but unfairly ignored by our corporate government.

It is extremely important to remember that Professor Michael Barry Consultant at St James’s hospital Dublin stated to Kenny that his recommendation would be that the Irish health Board and or HSE would not be in a position to pay for the Medical Cannabis Kenny required.

They (sorry the Irish tax payer) would still be in a position to continue to pay for anticonvulsant pharmaceutical drugs. The same drugs that don’t seem to be working for Kenny and have side effects for him.

The question now is and still remains why would Irish consultants whose salaries are paid for by the Irish tax payer and working on behalf of our HSE give licences to people in need of medical cannabis and then expect them to pay thousands of euro to receive this medicine.

Then to add insult to injury expect these patients of cannabis to travel outside their country to get that medicine.

So let’s please make a concerted effort to force pressure on our legislators to sign into law ASAP that Irish citizens have the right to use medical cannabis at a reasonable cost to them and the Irish people.

Previously: Kenny Tynan on Broadsheet

For your consideration.

Patients of Cannabis.

A documentary

Johnny Keenan writes:

This documentary is directed, produced and narrated by concerned citizens Robbie Gannon, Lorraine Kennedy and Terry McMahon.

The testimonies you will see and hear are passionate pleas by our Irish people for clemency and the right to have medical cannabis to deal with their own condition.

These 10 brave souls you will see and hear are the voice of thousands of other Irish people who suffer in silence.

Vera Twomey’s daughter Ava has a rare form of epilepsy that can cause up to 20 seizures a day.

Dave Kelly has a form of motor neuron disease.

Kenny Tynan suffers with a brain tumor.

An anonymous mother talks about aggressive chemotherapy that her son went through. She heard Simon Harris (Minister of Health) talk about a license process where chemo patients could apply for such a license. She could not however get a consultant to sign the application.

Patrick Bradley suffers with chronic pain.

Gerri Sparrow suffers with emphysema and asthma.

Stefano Speranza has chronic pain in his lower back through a work related injury

Dr Garrett McGovern is a GP and Addiction Specialist who is aware of a plant that patients use. These patients find this plant more beneficial than conventional drugs.

Mark Cleary’s mother in law Geraldine Martin suffered with pneumonia and a tumor on her lung.

Caroline Conlon is Alex Baizert’s fiancée who talks about Alex’s struggle as an activist who suffered with epilepsy. Alex passed last April. Please see his testimony here

What brings these ten ordinary people together is the extraordinary power of Medical Cannabis.

It’s a crying shame that these ordinary people have to go to extraordinary measures to get a medicine that should be freely available to them by our HSE.

The question now is, why do the Irish people still have to suffer in pain while the rest of the world has access to medical cannabis?

There is absolutely no logic for the continuation of such ignorance towards our people who need medical cannabis.

Please please look at this essential 37 minute documentary and then act accordingly.

There is no doubt in my mind that if we act together now we can force OUR government to sign into law this year 2018 that Irish citizens are entitled to choose medical cannabis as a form of medicine.

Not alone that. It should be freely available in Ireland to them. With the massive demand for medical cannabis all across the country jobs can be created and Irish businesses can prosper by helping our people who need and want this medicine.

We have pharmaceutical plants all over the country. So why don’t we have green houses for medical cannabis to be produced into medical cannabis oil.

This is logical thinking and should be encouraged rather than been ignored.

If you are suffering and you want to add your video testimony for the legalisation of medical cannabis then follow the link here to Patients Of Cannabis

Yesterday: O Canada

Today.

Westminster, London

Cork mum Vera Twomey, who secured a licence for medicinal cannabis for her daughter Ava,  will speak in the House of Commons this afternoon..

Vera became friends with Hannah Deacon, whose six-year-old son has severe epilepsy, when they both lived in Holland to receive medicinal cannabis for their children, as they lived on the same street.

Yesterday, Ms Deacon was told her son Alfie Dingley would be granted a licence for medical cannabis – becoming the second child with epilepsy in the UK to be granted such a licence.

Via Vera Twomey (Facebook)

Related: Home secretary announces review into medicinal cannabis use (The Guardian)

Previously: Vera Twomey on Broadsheet

Screen Shot 2017-03-22 at 09.37.02

Next Wednesday, March 29, a protest will be held outside the Dáil in support of People Before Profit Gino Kenny’s Cannabis for Medicinal Use Regulation Bill.

The planned protest follows Vera Twomey’s walk from Cork to Dublin to highlight how her seven-year-old daughter Ava cannot legally access medical cannabis containing THC – the substance in cannabis which gives people a ‘high’ and is illegal.

Ava has Dravet Syndrome which causes her to suffer severe multiple seizures daily.

After walking to Dublin, Ms Twomey held a four-hour meeting with the Minister for Health Simon Harris, during which she was presented with several options.

On Sunday night, Vera explained what these options are in a Facebook live video and summed up where her family stands now.

She explained:

“The first option that we were given was the public neurologist. Now the public neurologist has stated that she’s not going to support or oversee the overseeing of Ava’s care unfortunately.”

“The second option would have been then the private neurologist who went to great lengths, I can only say great lengths to try and source an avenue for us to go down. We were offered the opportunity to travel to Canada – to meet with a consultant over in Canada who would prescribe and then possibly the overseeing of that could have gone on within Ireland. But I mean, unfortunately, for our family, our child is not stable enough – in spite of the fact that she’s made great progress – she’s not stable enough to go on a long-haul flight to Canada or anywhere else.”

Thirdly, the treatment abroad scheme was mentioned. The treatment abroad scheme again would obviously involve travel to some destination. It is not a possibility really for us, at this point, and then there was the question of the medicinal cannabis being an experimental treatment, I don’t know how accurate that is, that’ out.”

Four then, is the compassionate access programme which, I mean, I don’t whether you guys are as shocked as I am by this, but the consultants describe the compassionate access programme as completely unworkable and it’s not possible for any consultant to successfully put in an application for a patient because of the legal situation surrounding the THC part of the treatment. There won’t be any consultant, neurological or otherwise, from what I have been told by senior physicians that will be able to put forward this application, even if they wanted to.”

“Finally, the final option is legislation. So it seems that, after our meeting above in Dublin with Simon Harris and his people that the only alternative out there for people like us is to fight for legislation in this country because the neurologists are saying… and actually I feel very, I feel very sympathetic towards their situation because it is not the neurologists’ fault that they can’t prescribe this – it’s the law and it’s the law that has to change. And it’s the law that needs to change as urgently as possible.”

“I have to say to ye that I have a little girl here that’s badly, badly in need of help. And it’s a fright to god that there’s people on our own doorstep, there’s people all across Europe, there’s people all across the world getting access to medicinal cannabis for their families but that my child isn’t allowed to do that. That my child isn’t allowed access to something that’s, it’s a human right to have access to a medication to help your situation.”

“I would just like ye to know it’s very hard to come out on the computer like this and to be telling you all about it because I wish I had good news but I haven’t. And I just, I really hope lads that, you know, when it comes to the 29th of March, or when it comes to next month, or the month after that, that you won’t forget about Ava. Because we are really up against a very, very… we are up against the Government I think. And the whole thing is so wrong.”

“And I put up on Facebook, if you’d like to see it tonight, the Oireachtas report which was on a number of weeks ago where the HPRA were discussing the narrow guidelines and all the other information and the thing is: the evidence is out there. You know the evidence is all across Europe. It’s all across Canada, it’s all across the world: that medicinal cannabis works. But the Government don’t want to accept it. And I don’t know how we’re going to change it but just, would you please stay with us because, we really need the support of every one of ye out there or otherwise because I don’t think any of us are ever going to get what we need.

Please, feel free to share this and please, if ye can, I know there’s buses and everything being organised all around, in different places but the protest, the peaceful protest above outside the Dail is on the 29th of March [Wednesday], it’s going to be at 5pm but if you want to be there earlier than that, I’ll be there anyway, I’ll stand with everyone above there, I’ll be proud to stand with everyone above there, for the sake of our families and I, again, just the endless support that we’re receiving, we really, really appreciate it. Thanks everybody.”

Vera Twomey (Facebook)

Screen Shot 2017-02-17 at 12.00.26

In December, People Before Profit Alliance TD Gino Kenny’s bill to allow for the legislation of medicinal cannabis was passed in the Dáil.

However, as the Government would like to make some amendments to Mr Kenny’s bill, the bill will be debated at the committee stage in coming weeks.

Last week, the Health Products Regulatory Authority (HPRA) released its Cannabis for Medical Use report saying cannabis should only be made available to patients with specific conditions.

Above, Mr Kenny has created a video with testimonies of people who support the legalisation of medicinal cannabis, including Tom Curran (top), husband of Marie Fleming, who passed away in December 2013 after her unsuccessful right-to-die challenge in Supreme Court in April 2013.

Ms Fleming had multiple sclerosis.

Thanks Gino