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Vera Twomey: How I found strength in my daughter’s struggle

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Vera Twomey has fought tirelessly for access to medical cannabis for her daughter, Ava

Campaigner Vera Twomey has fought tirelessly for access to medical cannabis for her daughter, but Ava and other patients are still left to struggle, she tells Cannabis Health.

Vera Twomey would describe herself as quiet and non-confrontational, and yet she has one of the loudest voices in Ireland’s campaign for access to medical cannabis. 

She has been forced to fight on behalf of her daughter Ava, 11 – who suffers from a severe form of epilepsy known as Dravet syndrome – and has relied on cannabis to control her seizures for several years. 

“Women are motivated by their children and when a situation arises that is deeply unfair and threatens their future, it has certainly motivated me to find my voice,” says Vera. 

“It’s the love that drives you. I found strength from my daughter’s struggle, she inspired me to be better and to do what was necessary on her behalf to get her what she needed.”

Vera’s daughter, Ava

She continues: “You lose the fear to speak out, and any reservations about your ability to be good enough has to be set aside, because your child is brave and resilient and continues to fight for their life and you have to do something to improve their situation.”

The mum-of-four, cast herself into the limelight in order to access cannabis medicines for Ava, walking from her home in Cork to Leinster House in Dublin in protest to ask former Health Minister Simon Harris for help in person.

Vera has since spoken in the House of Commons and the European parliament, as well as all around the Republic of Ireland and Northern Ireland on the topic of medical cannabis, penning a book about her and Ava’s journey along the way.

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 and used her acceptance speech, broadcast by RTE, to make yet another plea to the Irish government to legislate for medical cannabis usage.

But although Vera has thrown herself into the public eye, she has struggled to come to terms with putting her child through the same exposure.

“We have had to talk publicly for so long about our children and their illness. It’s private, it should be a family issue and yet as parents, trying to access medical cannabis we don’t seem to be given that respect,” she says.

“As a mother who has seen her child go through 15 or 16, different types of pharmaceutical medications, never once was there any issue or any arguments about getting access to those. Yet the amount that we have to expose ourselves when fighting for cannabis it’s quite extraordinary.”

In the early days of her campaign Vera resisted sharing videos of Ava having seizures online and with the media, but she says journalists were right when they told her it would be the most effective way to make progress. 

“It’s a dreadful necessity that many of us have been forced to do, because you’re showing somebody who you love with all of your soul at their most vulnerable moments to strangers and hoping that sense will prevail. It’s completely wrong and such an invasion of privacy,” she adds.

“When people look back at the lengths that we had to go to to access medication for our children, I think they will be appalled.”

Ava is among 40 patients who have now been granted an individual ministerial licence to import Bedrocan oil to Ireland.

But until the coronavirus restrictions were introduced last year Vera and other parents or carers, were forced to travel to the Netherlands every three months to bring the medicine back.

Having been told there was no other solution, when the pandemic hit the Health Service Executive (HSE) stepped up and arranged for the importation and delivery of the medication for these patients,

Vera then embarked on another public battle to secure the arrangement permanently at a meeting with the Health Minister Stephen Donnelly in December. 

A month later, Donnelly would claim the government was facilitating “compassionate access” to cannabis medicines, with an announcement of the provision of funding for the Medical Cannabis Access Programme (MCAP) in January – almost two years after it was introduced. 

But the scheme failed to recognise the needs of thousands of patients in Ireland, including Ava.

Only four low dose cannabis-based medicines are covered by the programme, for people living with one of three qualifying conditions.

These include intractable nausea and vomiting associated with chemotherapy, severe treatment-resistant epilepsy and spasticity associated with multiple sclerosis (MS). 

Despite the majority of patients who are currently being prescribed cannabis under a ministerial license using Bedrocan products from the Transvaal pharmacy in the Hague, none of these have been approved for the programme.

The Irish Government says Bedrocan has not applied to be part of the MCAP due to the fact that Dutch authorities do not permit the commercial export of oil-based cannabis products to pharmacies or wholesalers outside of the Netherlands. 

“It saddens me deeply, but beyond sadness, it frightens me, because we depend on this medication for Ava’s survival,” says Vera, who currently pays 10,000 Euros up front every three months for the medicine and before it is refunded.

“It’s very difficult, particularly in light of Covid. If there was a job loss within the family or a medical emergency with another child, patients wouldn’t have the funds to access this medication,” she continues.

“Everybody is entitled to the best possible treatment, but it seems other Republic of Ireland patients are now going to be treated differently to us, shouldn’t we all be treated fairly?”

Since the announcement Vera has been calling on Donnelly to take steps to help patients with an individual licence fund these medicines at source. 

“If it can’t be included in the compassionate access programme we have to accept that, but there should be a facility for funding medication for the individual licence holders,” she says.

“They have fought tooth and nail to achieve access to cannabis for their family members or themselves and this leaves us in a situation where we are forced to continue to struggle. 

“It’s never ending, there seems to always be more obstacles to overcome.”

Vera’s voice is now amplified by the support of the recently-formed Irish Medicinal Cannabis Council – of which she is a founding member – which brings together the country’s leading cannabis advocates, including Tom Curran and Gino Kenny TD, to drive change and put cannabis back on the agenda.

“The fact that there is now an official council to respond to developments on the situation in Ireland is very helpful and much more effective,” she says.

“Within the cannabis community, there were lots of individual voices speaking about different issues, whether it be epilepsy, MS, chronic pain, but the overall objective for all of us is for fair and reasonable access to cannabis.”

It might seem almost impossible, but Vera is proof that progress is being made, however slowly.

“Things are only impossible until they’re possible. That’s what we’ve shown over and over again with medical cannabis,” she says.

“Everything was impossible at the start, but over the course of time we got a prescription, we found prescribing consultants and we secured the delivery of the medication.”

Vera adds: “Broader access to cannabis is going to change because there’s too many of us with stories of the extraordinary benefits for it not to be acknowledged and taken seriously in the future.”

A spokesperson for the Department of Health said it does not comment on individuals but added: “The products referred to are manufactured by the dispensing pharmacy in the Netherlands. The Dutch authorities do not permit the commercial export of oil-based cannabis products to pharmacies or wholesalers outside of the Netherlands but do allow the filling of individual prescriptions for collection by EU citizens from outside the Netherlands.

“Consequently, as they cannot be commercially exported, the manufacturers of the products have not applied to have them assessed by the HPRA for inclusion in the MCAP.”

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Fair Trials and Last Prisoner Project seek to launch global cannabis justice project

Fair Trials’ Global CEO Norman L. Reimer to discuss the project at Cannabis Europa Conference in London on June 29.

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A new initiative from Fair Trials and the Last Prisoner Project aims to redress the harm caused by cannabis prohibition and to secure relief for those in prison for cannabis-related convictions.

The criminal justice reform NGO, Fair Trials hopes that the industry will support its work in countries across the globe where cannabis laws are being liberalised. Through collaboration with local partners in appropriate jurisdictions, the Fair Trials project will identify people in need of legal assistance, and recruit, train and match volunteer lawyers to take on their cases.

Fair Trials has enlisted the help of the Last Prisoner Project, a coalition of cannabis industry leaders, executives and artists dedicated to bringing restorative justice to the cannabis sector.

More and more jurisdictions are allowing adults to use and distribute medical and recreational cannabis. But after decades of prohibition, countless people remain behind bars or continue to suffer the collateral consequences of a cannabis conviction.

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“The injustice of cannabis prohibition has resulted in millions of people worldwide serving time in prison or being saddled with a cannabis conviction, which brings with it a lifetime of harmful consequences, ranging from education and employment opportunities to immigration status and parental rights,” said Fair Trials Global CEO, Norman L Reimer.

“Of course, these harmful effects of prohibition not only impact the individuals charged, but also their families and communities. And those effects have been borne disproportionately by minorities, communities of colour, and the socio-economically disadvantaged. Legalising cannabis alone does not equal justice. Together, we must address the ongoing harms of past prohibition and leave no cannabis prisoner behind.”

The project will be modelled on the US Cannabis Justice Initiative, a collaborative effort between the cannabis industry and volunteer lawyers in the United States. When Norman Reimer was the Executive Director of the National Association of Criminal Defense Lawyers (NACDL), he partnered with the Last Prisoner Project to establish the initiative.

“Key to the success of the initiative has been generous donations from legal cannabis companies and consumers nationwide,” said Last Prisoner Project Co-Founder Steve DeAngelo. “Fair Trials, with its global reach as the world’s criminal justice watchdog, is uniquely positioned to build and house the infrastructure that’s going to be needed.”

Tomorrow (29 June), Norman Reimer will address the Cannabis Europa Conference discussing the project. Mr Reimer will be part of a panel entitled ‘Leave No Cannabis Prisoner Behind,’ and will be joined on that panel by Mary Bailey, Managing Director at the Last Prisoner Project; Dr. Laura Garius, Policy Lead at Release; and Denzel Uba, an individual impacted by criminal cannabis prohibition.

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TOWIE star Amy Childs launches CBD range in honour of Jorja Foundation

The product range sees a portion of the proceeds going to the Jorja Foundation.

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Amy Childs at the launch of her new CBD range, Jorja Botanicals

TOWIE star Amy Childs launched her new CBD range this week, with a star-studded event that shone a spotlight on the story of six-year-old Jorja Emerson.

Amy Childs was joined by former Love Islanders, Amy Hart and Cara Delahoyde-Massey, alongside her  co-stars, Frankie Essex, Tom Skinner, Carina Lepore, Saffron Lempriere and Mark Ferris, for a heart-warming event celebrating the launch of her new CBD Infused beauty range, Jorja Botanicals.

The signature collection sees a portion of the proceeds going to the Jorja Foundation, which was set up in honour of six-year-old medical cannabis patient, Jorja Emerson.

The event saw The Only Way Is Essex star Frankie Essex, break down in tears as she heard Jorja’s story. Frankie, who gave birth to twins four weeks ago, wiped her eyes when Robin Emerson, Jorja’s father, showed videos of the life-threatening seizures his daughter was suffering before they discovered medical cannabis

Love Island star, Amy Hart has since taken to Instagram to spread the word about the latest political campaign that sees Childs and Emerson petitioning to make medical cannabis more widely available on the NHS

The Jorja Botanicals range was inspired by Jorja, who was diagnosed with a rare chromosome abnormality called 1q43q44 deletion, which has a side effect of life-threatening seizures. Her illness resulted in her being admitted to intensive care on two separate occasions, where Robin was told that she may not make it.

jorja botanicals

TOWIE stars joined Amy Childs for the launch of her new CBD range

To save his daughter’s life, Emerson knew that he had to dig deep and find a treatment that would not only help Jorja but ultimately go on to help others.

At the time it was still illegal to prescribe cannabis in the UK. Emerson joined the campaign to see medical cannabis legalised in the UK in November 2018, and Jorja’s was among the first children to be legally prescribed medicinal cannabis.

In 2021 he went on to create the Jorja Foundation – a charity set up to help other families and children going through the same battles that Robin had to face.

The Jorja Foundation’s core principles are to fund special needs equipment that is not funded through the health system, fund family counselling, private appointments and tests when a second opinion is needed, as well s cannabis-based treatment for children in the UK and to continue to campaign and educate for wider NHS access in the UK for cannabis-based medications.  

Childs commented: “When I saw Robin & Jorja’s story on social media it broke my heart.

As a mum, I couldn’t imagine the pain of being told to take my child home to say goodbye to them. I love that Robin has fought for Jorja & is now helping other families with the Jorja Foundation. 

“I’m so happy that I can help the foundation by being the Creative Director of Jorja Botanicals. We have created some beautiful products for the whole family to enjoy. We will be donating a percentage of the proceeds to the foundation so that we can help as many families as possible. ”

 Emerson added: “ This is the fruition of a lot of hard work over many months and I am extremely proud to launch what is the first family brand in this category. In the coming weeks, we will also be launching a ‘parent’ focused cosmetic range in partnership with our creative director Amy Childs and our premium line of tincture oils.”

 

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South Africa launches first trial of cannabis for chronic pain

The study will test whether cannabis can replace opioids in the management of chronic pain.

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South Africa’s first cannabis trial has launched after initial results “show promise” for the treatment as a replacement for opioids.

The Pharma Ethics Observational Study is led by Biodata, a subsidiary of Labat Africa, and will test whether cannabis can replace opioids in the management of chronic pain.

The study will involve 1,000 participants who have been taking opioids for pain management for at least three months and are prepared to switch to cannabis as an alternative.

Biodata is the brainchild of Dr Shiksha Gallow, a cannabis clinician and the principal investigator in the trial which took over 18 months to get official clearance.

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Dr Gallow said the trial is set to be ground-breaking as South Africa’s first real-world study of medical cannabis. Researchers predict that it will provide much-needed insight into the link between cannabis genetics and patient outcomes.

Dr Gallow told Cannabiz Africa: “We are currently recruiting patients, and data-capturing all the questionnaires and feedback from the patients for the live Study. It has been fairly slow. However, more options have been introduced, as suggested by the patients in the pilot study.

“The pilot results of the study were very promising, as it showed 98 per cent of the patients have some sort of pain relief from the cannabis.

“We were able to wean these patients off their opioid treatment. In the pilot group of patients below the age of 55, it was shown this group preferred to smoke cannabis and patients older than 55 years preferred oil. The patients who smoked the cannabis had relief almost immediately, while the oil took some time to alleviate their pain.”

“Once we reach the sample size required and all of the relevant data has been collated, the results of the study will be published. We have currently renewed this study for another year, due to the initial slow uptake of research participants.”

Patients can apply to be research participants through the Biodata website.

Labat is expanding its footprint over the next few months with the introduction of CannAfrica kiosks in major shopping malls.

The company believes these will be the “ideal locations for physical sign-up points for the study”.

Labat said the kiosks will also serve as Biodata dispensaries and is engaging with a number of vape stores to do the same, although these would have to be subject to South African Health Products Regulatory Authority’s pharma-ethics requirements.

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