Vera Twomey received a People of the Year award last week for her successful campaign to obtain medicinal cannabis for her daughter Ava, a sufferer of Dravet Syndrome.
Ms Twomey has claimed she confronted Mr Varadkar before the awards ceremony about the passage of legislation to make it easier to access cannabis oil.
Describing him as “rude”, Ms Twomey said the Taoiseach told her he could not support the bill as he had not received promised amendments from its sponsor, Solidarity–People Before Profit TD Gino Kenny.
Ronan Emmett writes:
Is he a liar or not? This cuts to the very heart of our democracy and people like him get away with it when good people say nothing.
Is Leo a liar? If he is he needs to go. This isn’t funny anymore. It’s time for some radical action.
Luke Ming Flanagan (left) and Gino Kenny flank Vera Twomey at Dublin Airport in April, 2017 after Vera obtained medicinal cannabis for her daughter Ava in Barcelona, Spain.
Luke ‘Ming Flanagan MEP writes:
Vera Twomey has fought a well documented battle to gain access to a life changing cannabinoid based medicine for her daughter Ava Barry.
She now faces another battle in order for her daughter to continue using this same medicine.
The reason. The HSE are refusing to fund it under the Long Term illness Scheme.
Not because of medical reasons but purely for bureaucratic reasons.
Furthermore the HSE are now trying to force Ava Barry’s family to use another product sourced in the Czech Republic which does not have the support of either of the two consultants working with the child.
Worse still is the fact that the family would not get the equivalent medical support in the Czech Republic that they are currently receiving in The Hague.
The HSE are telling us that ‘Market Authorisation’ is the reason for this issue now arising. They say that due to this they cannot fund the medicine under the Long Term Illness scheme.
However it is clear to anyone that if the state wished to fund the medicine under another mechanism then they could. We are talking about €1600 per month. A drop in the ocean of HSE funds.
Vera Twomey and her family have climbed a mountain in order to get access to a medicine which has improved their daughters life above and beyond all expectations.
Having climbed this mountain it would be farcical and potentially tragic if all this progress was halted because a government bean counter couldn’t work out how to get few extra beans out of the jar.
Yesterday, Minister for Health Simon Harris granted Ava Barry, age seven, a special licence to be prescribed medicinal cannabis at her home in Cork.
Ava suffers from Dravets Syndrome and her parents Vera and Paul say cannabis oil, prescribed in The Hague where the family moved in June, has helped preventtheir daughter from having seizures.
Before going to the Netherlands, Vera took a well-publicised trip to Spain to secure the oil and take it back to Cork.
Terry McMahon writes:
Got a text late one night. Someone was looking for my number. Was it okay to pass it on? Anybody who wants my number can have it. Couple of minutes later the phone vibrated. Rarely answer the thing at night but this was different. She introduced herself. Voice unmistakable. Softer than I’d heard it on television.
But those circumstances were different. I wasn’t trying to rob her daughter of life-saving medicine. That was the first time I spoke with Vera Twomey. Five hours later we were standing on a security line waiting to board a plane to Barcelona.
Sitting in the airport that morning with Vera and her husband Paul should have been uncomfortable. Should have felt awkward. Should have had some kind of logic to make the three of us feel like we knew what the hell we were doing. But we didn’t. We were going on instinct.
A little girl was in a fight for her life against the gigantic ego of a Minister For Health. Nothing else mattered. That Minister refused to believe in miracles. Refused to believe in any power other than his own. Refused to recognize he was being given a lesson on the power of love by the parents of the little girl that he was intent on ignoring. But you don’t ignore Vera Twomey.
Paul walked us to the security gates. Me and his wife. Two strangers. A brief holiday is all. The camera hanging against my chest with the lens exposed. A tourist cliché. Paul said look after her. Out of earshot. A whisper. Humbling to shake the hand of such a man.
We were being watched as we went through security. Vera had been arrested a short time ago. Her arrest made headlines around the world. A mother’s love etched on the front page. They didn’t try to hide the fact that we were being watched either. But they didn’t know they were being watched too. The camera lens was exposed for a reason. The red light recording sound and vision virtually invisible. Hiding in clear sight.
We arrived in Barcelona. Already getting to know each other on the plane. No time for pretense. Everything from the heart. Bullshit free. We were staying in Las Ramblas. Iconic hotel. Perfect rooms. Barcelona beauty. We had less than twenty-four hours.
And every minute would be used. Some of the most remarkably humane people a soul could yearn to connect with appeared. Courageous, inspiring and generous beyond measure, these people put everything on the line to help others. And were reviled for it. Mistrusted. Criminalised. While our Minister sat on a fat salary for doing nothing.
Sometimes all it takes is a simple plan. Do the right thing. We all know what the right thing is. Most of the time. But Vera and Paul, and their incredible daughter Ava, had been repeatedly lied to by the Minister and his coterie of cowards. Then maligned. Then ignored. Then politely dragged away by police.
Vera needed a new plan. And she hatched it in Barcelona. The food tasted incredible that night. As did the wine. As did the air. That’s how bravery affects the senses. The opposite of how our Minister’s cowardice dulls them.
Back in Dublin next morning security was waiting for us. More of them than usual. Ready. I held back. Separated. Not to conceal anything. The camera was in full view. Except for the tiny red recording light. They searched her. They searched me. They questioned us. They could have been bastards. But they weren’t. They did their job. Meticulously.
But you could tell their hearts weren’t in it. Their hearts were bigger than this bullshit charade. They were mothers and fathers. They were in awe of Vera Twomey. Almost as much as I was.
That’s the impact Vera Twomey has. The impact Paul has. They make you believe corrupt politicians can be exposed. Because they just did it. They make you believe in the impossible. Because they just made it happen. They make you believe love moves mountains. Because it fucking does.
I just spoke on #MedicinalCannabis Bill and it appears FF and SF are going to support the Bill now, public pressure has clearly been a part of this. It shows that campaigning can have impact, particularly the campaign work of Vera Twomey @veras1#dubw#Dáil
Interesting development with Gino Kenny’s Medical Cannabis Bill – Health Committee recommended killing the Bill, but now FF and SF members of that committee seem to be changing their views to allow it to proceed – heavily amended.
The Government has agreed to allow the progression of legislation to provide for medical cannabis to the next legislative stage.
The move is despite the fact that the Oireachtas Committee on Health recommended withdrawing Gino Kenny’s bill because of “fundamental flaws” in the legislation.
Minister of State at the department of Justice and Equality David Stanton said he was of the view that “if you have a very flawed piece of legislation, it might not be possible to amend it, perhaps it should be redrafted and resubmitted”.
However he said there seemed to be a consensus among TDs that the bill should proceed to Committee stage in the Dáil.
Luke Ming Flanagan (left) and Gino Kenny flank Vera Twomey at Dublin Airport in April after she obtained medicinal cannabis for her daughter Ava in Barcelona. Vera, her husband Paul and Ava are now living in Holland.
Further to the halting yesterday of the Medicinal Cannabis Bill from proceeding in the Dáil with bill sponsor Gino Kenny TD calling the chamber “a kip”…
Luke Ming Flanagan MEP writes:
Vera Twomey and family have been forced to leave Ireland and Gino Kenny’s Medicinal Cannabis Bill has been thrown out of the Dáil.
There’s something amiss! The system is failing to even look after itself.
Political parties like Fine Gael, Fianna Fáil and Sinn Féin have a great reputation for surviving. Their first instinct has always been to ensure that they do not introduce something that will jeopardise their power base. But now they have taken their eye off the ball.
While the FG/FF/SF brigade are a conservative lot at the best of times, it seems that they are allowing the machinations of the Dublin bureaucracy to run the show now – much to their own detriment.
The support for medicinal cannabis is overwhelming. When Vera Twomey walked to the Minister’s office in Dublin, form Aghabullogue in Co Cork, she had tremendous support.
School children came out and marched with her. School brass bands marched with her. Parents shook her hand. Everyone could see that she was fighting for the good of her child Ava. An honest battle, a humane request.
But now Vera, her husband Paul and their 4 children have left Aghabullogue and are living in the Hague in the Netherlands.
I spoke with Vera yesterday. She was extremely sad. Not because she has had to move away from Ireland, from her mother and her family. Not because she has been forced to set herself and her family up in a new country and a new culture (they are managing very well thankfully). None of these reasons.
Vera, like most Irish people, had faith in the ‘system’. She always reckoned that eventually common sense would prevail and that the political parties who run our country would see the light. Unfortunately she has been betrayed by the same system.
What has brought sadness to Vera was the news that Deputy Gino Kenny’s Medicinal Cannabis Bill was brought to a halt in the Dáil. Despite all the evidence presented to the Health Committee on medicinal cannabis, in face of the fact that country after country are making provision for medicinal cannabis, our TDs and Senators have let Ava and thousands of other Irish citizens down.
Those who suffer chronic pain, glaucoma, MS, arthritis, epilepsy and other ailments have been let down.
What amazes me is that the political parties have nothing to lose. This is not a contentious issue. Children in national schools have asked me about medicinal cannabis. They can see that it’s a humanitarian issue. How then has this come to such a sorry state?
The Minister and the other public representatives have not done their job.
They have abdicated their duty to a faceless institution called the Health Products Regulatory Authority (HPRA). We need politicians to represent the people of Ireland.
For as long as the Oireachtas is peopled with abdicators it will be a ‘Kip’.
A fundraiser for Ava Twomey, whose case has highlighted the lack of availability of medicinal cannabis in Ireland.
Fiona MacGinty writes:
Party for Ava – fund raiser for Vera Twomey & Family, currently in the Netherlands where Ava, who suffers from Dravet Syndrome , a rare form of childhood epilepsy, is receiving medical cannabis treatment, denied to her here in Ireland. Tickets only €12 ! Great lineup of entertainment and a surprise guest! Tivoli Theatre [ 135-138 Francis St, Merchants Quay, Dublin 8] July 18, 7:30pm…