“Those words will stay with me forever,” says Vera Twomey, remembering one of the darkest chapters of her life.
It was the day that doctors delivered an incredibly bleak outlook for her baby daughter Ava after being diagnosed with Dravet Syndrome, a rare form of epilepsy.
She would never walk or talk, they said, and might not live beyond the age of three. She would also be in residential care for the rest of her life.
This life trajectory then began to take shape as predicted, with Ava suffering multiple seizures a day and enjoying few of the joys of life that other little girls could.
But eventually her mother could no longer stand by and watch Ava try yet more pharmaceutical drugs with no sign of a solution.
She decided to try medicinal cannabis, beginning her fight against the medical, political and societal barriers stopping her daughter and others access a potentially life-saving treatment in Ireland.
“There are other families being told the same sorts of things as we were. People might wonder why I continue to stay involved in the issue. But those words stay in my mind. The delivery of what Ava’s future was going to be is something that I will never forget and I will carry with me for the rest of my life.
“You wouldn’t wish any parent to hear that. But if there is something that can help a child, and it’s being withheld, then that’s wrong. There is no justice with that at all. So I try to do what I can.”
After securing medical cannabis in the Netherlands, and proving its dramatically positive impact on Ava, Vera has campaigned tirelessly to liberate access to the treatment.
She even walked from her home in Cork to Leinster House in Dublin in protest to ask health minister Simon Harris for help in person.
But Ireland, like the UK, has moved frustratingly slow for the families desperate to try such medication. Vera has become a figurehead of action for this frustrated group.
In 2018 she was a winner at the People of the Year awards, which recognise people in Ireland making a real difference to the lives of others.
She used her acceptance speech, broadcast by RTE, to make yet another plea to the Irish government to legislate for medical cannabis usage.
“The winners were chosen and voted for by ordinary people like ourselves so I was very honoured. There was an astonishing amount of people voted for us. So I guess in voting for me they were voting for support of medical cannabis. It really helped to raise the profile of the cause.”
Watching on in the audience was Irish Prime Minister Leo Varadkar.
“I actually bumped into him at the back of the room before the awards. I asked him what was going to happen with medicinal cannabis. Unfortunately he was quite dismissive of me. I had not planned on addressing Leo Varadkar directly from the stage but after I’d spoken to him I was quite upset at his reaction.
“He said the legislation was going nowhere. So I addressed him directly from the stage. The reaction was overwhelming. People stood up and applauded, it was so special and I think their response reflected the general view in the country that it’s time for medical cannabis to be taken seriously and given the legitimacy that it deserves.”
In May last year, a letter published in the Irish Times by a collective of doctors warned that Ireland was “sleepwalking into the legalisation of cannabis”. The doctors, clearly opposed to liberalisation, pointed to a “campaign of misinformation” about cannabis medicine.
Vera says “It was the usual kind of ‘trojan horse’ fear-mongering type of language. It’s just very disappointing to see professionals coming out with those kind of remarks.”
“There is a limited number of doctors coming out to speak on the subject of medical cannabis. The Irish Times has quite frequently taken up the comments of the doctors who are opposed to the introduction of medical cannabis.
“There are many consultants interested in medical cannabis, but I believe there’s a lack of education to help them to come to an educated conclusion regarding the treatment. So its very difficult to criticise doctors for not coming out and speaking more publicly about the treatment.”
The following month, Ireland’s health minister Simon Harris signed legislation allowing access to cannabis-based products for medical use on a pilot basis for five years.
The Medical Cannabis Access Programme allows medical consultants to prescribe medicinal cannabis to patients that have failed to respond to standard treatments for spasticity associated with MS, intractable nausea and vomiting associated with chemotherapy and severe, refractory (treatment-resistant) epilepsy.
Access in the months that followed was limited, as it has been in the UK.
“The programme was announced but they had not attached any products to it, so it wasn’t functioning. Not a single patient has been prescribed anything under the programme. This is further confusion for consultants in this country.
“There were families I spoke to that were being told by consultants that they couldn’t prescribe until the programme was up and running properly.
“This isn’t correct as they could apply under an individual license for a patient. We can’t place the blame at the door of the doctors because there are mixed messages being sent and they don’t have a clear programme to apply under.”
Finally in December, came a move that had been promised in autumn. The first two products, made by Canadian and European pharma firms respectively, were approved for use in the scheme, subject to licenses.
Progress otherwise has been in short supply; leaving many families in desperate limbo, waiting for access to the potentially transformational treatment.
“It’s been total confusion amongst parents. If they want to apply through the individual licensing system, the consultants aren’t sure whether they can or cannot. Then, if they do apply, they are still seeking advice and information which maybe difficult for them to source regarding dosage or interaction with other medications.
“It’s a human right to have access to reasonable medical care for yourself or for your family member. We got a tremendous amount of support for Ava to access her medication and she’s proven how successful it can be. So I feel that other patients out there deserve the opportunity that Ava has got. There is room for people’s suffering to be removed under this medication.
“I’m not suggesting it could be removed for everybody but people deserve the option without going through the tremendous amount of trauma that we went through. People are ill themselves or looking after people that are very sick and you shouldn’t have additional pressure. It’s just another medication but its still being treated with kid gloves on.
“Obviously there has to be responsibility for all types of medication but it shouldn’t be made so difficult for patients and doctors.”
Vera recently published her book, ‘For Ava: An incurable illness, A reluctant activist, An ongoing campaign.’
Her family’s emotional journey is helping to inspire others in similar circumstances; One reviewer writes: “As a mum fighting to access medical cannabis for my son Vera’s book inspires me to continue the fight”.
Vera says: “I wanted a written record for my children in future to see how brave their sister was and what she went through. Also, their mummy was on the phone a lot and going to a lot of meetings, so I want them to know when they’re older why I was doing that. The other reason is that I think hope is incredibly important.
“We were given no hope at all of what Ava could achieve, but we didn’t accept what they told us and I want the book to give hope to other parents and patients in a similar situation – I want people with any condition to know that you don’t have to accept verbatim what you’re told. Doctors can be wrong and with love and determination you can turn the situation around, into something so much better.”
As the book title suggests, Vera’s battle to help open up access to medicinal cannabis Ireland goes on – and she continues to support other parents in similar situations.
Much of her time, though, is devoted to her children.
Ava, now 10, is attending school and, at the time of writing has only missed three days of classes since the new academic year started in September.
She no longer takes any pharmaceutical medication, with just CBD and THC medication in her daily routine.
The family travels to Holland every three months to collect her Bedrocan medication, using an individual license. This treatment is not yet included in the products lined up for inclusion in the Irish government’s access scheme.
“She is chatting, she’s funny, she’s determined, she’s engaging with her brother and sisters, she is so loving and loved and just a wonderful little girl to be around. Her progress continues.
“The seizures of course would have done catastrophic damage to her development but she’s moving forward and the most important thing is that she’s a happy.”
Vera’s book is available in paperback and on Kindle via www.amazon.co.uk.
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