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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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Six big cannabis sector stories you might have missed this week

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It’s been another week of big news in the cannabis world.

At Cannabis Health, our in depth coverage of the ongoing growth of cannabis as a medical and wellness product continues

Meanwhile, over at Cannabis Wealth, we’ve been following all the big industry and policy news in a week which has seen some important developments..

Been busy and want to get caught up in a hurry?

Here are the six things you need to read to stay in the loop this week.

1. Reprieve for medical cannabis patients

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year.

Medical cannabis

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020.

Read the full story.

2. UK largest’s medical cannabis trial reports back

The first findings from the UK’s largest medical cannabis patient study show quality of life improved by more than 50 percent.

Preliminary results from Drug Science’s Project Twenty21 study, have found medical cannabis significantly improves quality of life for people with life-limiting conditions such as chronic pain, multiple sclerosis (MS) Tourette’s syndrome and post-traumatic stress disorder (PTSD).

Published on Tuesday 11 May, the report is the first real-world data to be collected on medical cannabis in the UK.

Read more here.

3. Harrowing first-hand account of medical cannabis user
Diagnosed with a personality disorder and experiencing debilitating anxiety which left him housebound, Craig – whose name has been changed – had exhausted all treatment options and was losing all hope.
He speaks about how medical cannabis helped save his life here.

4. CBD market set to shrink

The UK’s CBD sector looks set to shrink significantly as the roll out of new regulations continues to batter the industry.

The FSA has confirmed to Cannabis Wealth it received applications for 803 different CBD products – but only 42 have been advanced to the next stage of the process so far.

More than half of all applications (445) were ‘incomplete’ and a further 41 have been withdrawn altogether.

Read the full story here.

5. CBD not linked to single doping case

CBD has not been linked to a single failed drugs test in UK sport despite fears about the undeclared levels of THC in some products.

The World Anti-Doping Agency removed the cannabinoid from its banned substances list in 2017 and since then several high profile athletes have publicly endorsed CBD products.

Even though CBD – which has no psychoactive properties – is not banned, the UK Anti-Doping (UKAD) still warns athletes to be cautious with treatments.

Read our exclusive report here.

6. School’s out for cannabis class

The first class on a pioneering university medical cannabis course have concluded their first year of studies.

The research programme at the Humboldt-Universitat zu Berlin examines the medical and nutritional uses of cannabis, production and the legal and economic frameworks of the business.

It’s the latest sign that medical cannabis is becoming a part of the mainstream education offering and a positive indication that new industry leaders will emerge in the coming years.

Full story here.

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Science finds a way for medical cannabis to relieve pain without side effects

Researchers have developed a molecule that allows THC to fight pain without the side effects.

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Medical cannabis
Many people living with chronic pain have found that cannabis can provide relief. 

Scientists may have developed a molecule which could allow medical cannabis to provide pain relief without any side effects.

Many people live with chronic pain, and in some cases, cannabis can provide relief. 

But the drug also can significantly impact memory and other cognitive functions. 

Now, researchers have developed a peptide that, in mice, allowed THC to fight pain without the side effects.

According to the US Centres for Disease Control and Prevention (CDC) around 20 percent of adults in the states experienced chronic pain in 2019. 

In some studies, medical cannabis has been helpful in relieving pain from migraines, neuropathy, cancer and other conditions, but the side effects can present hurdles for widespread therapeutic use.

Previously, researchers identified two peptides [molecules which are made up of amino acids] that disrupt an interaction between a receptor that is the target of THC and another that binds serotonin, a neurotransmitter that regulates learning, memory and other cognitive functions. 

When the researchers injected the peptides into the brains of mice, the mice had fewer memory problems caused by THC. 

Now, this team, led by Rafael Maldonado, David Andreu and colleagues, has gone one step further to improve these peptides to make them smaller, more stable, orally active and able to cross the blood-brain barrier.

Based on data from molecular dynamic simulations, the researchers designed two peptides that were less than half the length of the original ones but preserved their receptor binding and other functions. 

They also optimised the peptide sequences for improved cell entry, stability and ability to cross the blood-brain barrier. 

Then, the researchers gave the most promising peptide to mice orally, along with a THC injection, and tested the mice’s pain threshold and memory. 

Mice treated with both THC and the optimised peptide reaped the pain-relieving benefits of THC and also showed improved memory compared with mice treated with THC alone. 

Importantly, multiple treatments with the peptide did not evoke an immune response. 

Reporting in the American Chemical Society’s Journal of Medicinal Chemistry, researchers say that these findings suggest the optimised peptide is an ideal drug candidate for reducing cognitive side effects from cannabis-based pain management.

The abstract that accompanies this paper can be viewed here.

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Dutch Government to supply medical cannabis for UK patients until 2022

The Department of Health has reached an agreement to continue the supply of Bedrocan oils

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The Dutch Government will supply medical cannabis to UK patients until 2022

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year. 

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020. 

After outrage from campaigners, the Dutch government agreed to continue supplying the life-saving products until 1 July, 2021 while a more permanent solution was reached.

This waiver period has now been extended until 1 January, 2022.

Health ministers promised to work with officials in the Netherlands to find a “long-term” solution, but according to those at the forefront of the campaign, there is still “some way to go”.

Hannah Deacon and son Alfie Dingley

Hannah Deacon’s son Alfie Dingley, who is prescribed Bedrocan products for a rare form of epilepsy, recently celebrated one year seizure-free.

In a letter to Deacon on Thursday 13 May, the DofH said it was working with the Dutch government, Bedrocan and the Transvaal pharmacy to proceed as “quickly as possible” with the UK production of these medicines.

It added that domestic production is “complex” and that manufacturing “unlicensed herbal medicines” comes with “significant challenges”. 

Deacon said that the UK production of Bedrocan products was the “only solution”.

While other cannabis-based medicines are available in the UK, experts have warned that there is ‘significant variation’ from one product to the next and switching an epilepsy patient’s treatment could be ‘life-threatening’.

“With the 1 July deadline for Bedrolite supply to cease from the Netherlands looming ever closer, we made it clear we wanted an extension to the agreement to stop the situation becoming dangerous for Alfie and the other patients receiving this vital medicine,” commented Deacon.

“The long term solution of Bedrocan products being made in the UK still has some way to go, but it can be the only solution and we thank everyone who is working very hard to achieve this. 

“This is still a long way off from being okay, but for now we have the pressure taken off on the supply issue.”

With limited access to medical cannabis on the NHS, families are still calling for the Government to help fund their children’s prescriptions, which can cost thousands of pounds each month.

Deacon added: “The ever-pressing issue of financial burden on the many families and patients wishing to use medical cannabis in the UK remains and this is a huge issue which needs dealing with.

“There are many ways in which the Government could step in and help access for very vulnerable people and we will continue working as hard as we can to make things better for all.”

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