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.”
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.”
Spain approves first cannabis based medicine
The approval for Epidyolex was based on the results of four randomised controlled Phase III trials
Spain has approved the first cannabis based medicine, Epidyolex for patients with severe conditions such as epilepsy.
Epidyolex, an oral cannabis-based medicine, has been approved in Spain by the Ministry of Health after a large two-year trial. The approval for Epidyolex was based on the results of four randomised controlled Phase III trials. The clinical development of the therapy was spread over 10 different hospitals.
The trial involved over 700 participants with severe forms of epilepsy.
Until recently, there was no distinction between recreational and medicinal cannabis use in Spain which made it difficult to obtain products with higher quantities of 0.02 percent THC.
Spain and medical cannabis
Speaking at a press conference, neurologist Vicente Villanueva, head of the Refractory Epilepsy Unit of the Hospital Universtiari i Politècnic La Fe de València said the trials have found a 40 percent reduction in seizures. “As clinicians and researchers, we are satisfied to have these new options”,
Antonio Gil-Nagel Rein, a neurologist and director of the Epilepsy Program of the Hospital Ruber Internacional de Madrid reported: “The potential improvement of the quality of life in an area where therapeutic options are very small is good news. Access to a new drug with a novel and clinically proven mechanism of action is a reason for hope for patients and satisfaction for specialists.”
Epidyolex received approval from the European Commission in September 2019. This made it the first cannabis-based prescription medicine to receive authorisation.
Royal Society of Medicine and Integro Clinics announce pain and cannabis medicines event
The event takes place on October 11 from 8:30 to 17:30. It will explore the potential of cannabis medicines in the field of pain medicine in the UK
The Royal Society of Medicine has announced a collaborative event, Pain and cannabis medicines: Everything you want to know (but were too afraid to ask) in association with Integro Medical Clinics.
The event takes place on October 11 from 8:30 to 17:30. It will explore the potential of cannabis medicines in the field of pain medicine in the UK
Since the legalisation of cannabis medicines on prescription in November 2018, patients and clinicians alike have been awaiting more data or information regarding these medicines.
The event aims to provide those attending with a comprehensive understanding of the uses of cannabis medicines and the practicalities of using them in their own practice. It will consist of presentations on the history, regulatory environment and pharmacology of cannabis medicines including the use of different cannabis-based medical preparations in treating pain and related symptoms in a wide variety of clinical fields in the context of the current UK regulatory framework.
The day will feature presentations from international leaders in cannabis medicines such as Professor Raphael Mechoulam, the chemist who discovered the endocannabinoid system and THC, Dr Anthony Ordman, Leading UK Consultant in Pain Medicine and previous President of the Pain Medicine Section of the Royal Society of Medicine and Dr Arno Hazekamp PhD, who worked as Head of Research and Education at Bedrocan, the first European company to produce EU GMP grade cannabis medicines.
Dr Anthony Ordman, Consultant in Pain Medicine
Founder of the highly respected Chronic Pain Clinic at London’s Royal Free Hospital, he is one of the UK’s most experienced specialists in the treatment of pain. For his contributions to Pain Medicine, Dr Ordman was awarded a Fellowship of the Royal College of Physicians in 2005, and he is the Immediate Past President of the Pain Medicine Section of the Royal Society of Medicine. Dr Ordman is also Senior Medical Consultant and Lead Clinician at Integro Medical Clinics and has a special interest in the potential benefits of cannabis medicines in pain medicine.
Alex Fraser, Patient Access Lead at GrowPharma
Alex Fraser is a leading medical cannabis patient advocate. He is a patient himself having been diagnosed with Crohn’s Disease in 2010 at 19 years old. In 2014 he founded the United Patients Alliance and has since appeared on mainstream media multiple times, including on the BBC and ITV, to highlight the urgent need for access to cannabis medicines for the many patients who may benefit from them. He has taken delegations of patients to parliament to give testimony to politicians at the highest levels and organised educational events, rallies and protests calling for law change on medical cannabis. In February 2019 Alex joined Grow Pharma, one of the leading suppliers of cannabis medicines in the UK, as their patient access lead. He utilises his extensive knowledge of medical cannabis, his understanding of patient needs and his network in the industry to ensure patient voices are heard and represented. His work includes informing top-level policymakers, educating healthcare professionals and conceiving and running projects that increase general awareness and provide practical help for patients.
Professor Raphael Mechoulam, Professor of Medicinal Chemistry at the Hebrew University of Jerusalem in Israel
Most well-known for the total synthesis of delta-9 tetrahydrocannabinol (THC) and the discovery of the Endocannabinoid System. Since the inception of his research in the 60s, Professor Mechoulam has been nominated for over 25 academic awards, including the Heinrich Wieland Prize (2004), an Honorary doctorate from Complutense University (2006), the Israel Prize in Exact Sciences – chemistry (2000), the Israel Chemical Society Prize for excellence in research (2009) and EMET Prize in Exact Sciences – Chemistry (2012
Dr Sally Ghazaleh, Consultant Pain Specialist
Dr Sally Ghazaleh, is a Pain Management Consultant at the Whittington Hospital, and the National Hospital of Neurology and Neurosurgery, London. She qualified from the University of Szeged Medical School, Hungary in 2000, and then completed her specialist training in the Anaesthesia and Intensive Care Medicine at Semmelweis University in 2007. She went on a fellowship at University College Hospital, London, to gain her higher degree in Pain Medicine
During her time at the pain management Centre at University College Hospital, she gained extensive experience in dealing with and managing patients with complex multiple pain problems. She is accomplished at a variety of interventional and non-interventional treatments for this specific patient group. Sally specializes in managing patients with lower back pain, neck pain, neuropathic pain, abdominal pain, cancer pain, complex regional pain syndrome, post-stroke pain and Fibromyalgia. She has a particular interest in bladder and abdominal pain in women, and women’s health in general.
Celebrities including Drake call for a general pardon for those involved in cannabis offences.
There are over 150 signatures from rappers, artists, producers, law enforcement and more.
Over 150 celebrities including the rapper Drake and NBA athletes have signed an open letter to President Biden calling for a general pardon of non-violent cannabis offences.
NBA athlete Al Harrington, rapper Drake, world champion boxer Badou Jack, rapper and activist Killer Mike, NBA star John Wall along with Meek Mill and Julio Jones announced at a live-streamed event that they have co-written and signed a letter addressed to President Joe Biden. The letter requests a general pardon for ‘all persons subject to federal criminal or civil enforcement on the basis of a nonviolent marijuana offence.”
The idea for the letter to president Biden came from Weldon Angelos of the Weldon Project/ Mission Green and Academy for Justice Director Erik Luna. The Weldon Project aims to help fund social change and financial aid for those who are still serving prison time for cannabis-related offences. Angelo was an emerging musician before he was sent to prison for selling less than $1,000 worth of cannabis. Despite it being his first offence, Angelos went on to service 13 years of his term before eventually being released in 2016. He founded the project upon being released.
The letter includes signatures from 150 athletes, artists, law enforcement officials, academics, business leaders, producers, lawmakers, policy experts, reform advocates and other professionals.
It reads: “This resolve is witnessed today in both red and blue states, from coast to coast, as the American people call for an end to cannabis prohibition. Whatever one thinks of other drugs and other defendants, incarcerating cannabis offenders in federal prisons is a misuse of our nation’s resources and grossly hypocritical, given that a clear majority of Americans oppose cannabis prohibition and about half admit to using the drug during their lifetime.”
The live-streamed event discussed the letter to President Biden while placing an emphasis on a call for a general pardon. Speaking with Benzinga, Angelos said that the celebrities who had signed the letter had done so in support of a fellow artist, Ralo who is facing eight years for a cannabis offence. Despite several states switching to safe, regulated cannabis programs.
“When Biden ran for president, he promised to take action and use the pardon power of the presidency to release those serving prison time for marijuana and pardon their felony convictions,” Angelos said. “At a time when dispensaries are as prevalent as liquor stores in some states, it is time for President Biden to now make good on that promise.”
In a press release, Ralo said: “I appreciate my friends and peers in the hip-hop community, such as Drake & Killer Mike, for supporting my clemency because it’s just not right that corporations are allowed to violate federal law and become millionaires while people like myself go to prison for years,”
He added: “This is hypocrisy. But I am hopeful that Joe Biden will honour his campaign promise and grant us clemency, without delay, so that we can return home to our families and communities.”
Angelos also highlighted that the long term effects for those incarcerated ‘go beyond the prison walls’ making it difficult for former prisoners to get jobs, access to affordable housing or educational loans. “They’re limited in so many ways that people don’t realize when they just want to begin again and contribute to society. Enough is enough. No one should be locked up in federal prison for marijuana.”
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- Royal Society of Medicine and Integro Clinics announce pain and cannabis medicines event
- Celebrities including Drake call for a general pardon for those involved in cannabis offences.
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