EPISODE #103 Medical Cannabis - A Mother's Story with Vera Twomey: Cannabis Advocate, Activist and Author - Show Notes

This week we’re delighted to be joined by Vera Twomey, mother of Ava (who suffers from Dravet Syndrome, a rare form of epilepsy), medical cannabis advocate, activist, and author of ‘For Ava’.

From the perspective of a mother and caregiver, Vera shares the difficulties and frustrations faced accessing cannabis in Ireland, the importance of access to medical cannabis for children, and the extreme lengths she went to to find medicine for her child.

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About Vera

Vera Twomey has spearheaded the campaign for access to medical cannabis in Ireland firstly on behalf of her daughter Ava Barry and subsequently on behalf of thousands who continue to seek access to medication for their family members.

Vera's commitment and dedication to the advocacy for cannabis has become known across the UK Europe and North America. Vera has spoken within the House of Commons and The European parliament as well as all around the Rep of Ireland and Northern Ireland on the topic of medical cannabis.

Her extraordinary book "For Ava" details the struggle and dedication she exhibited to achieve access to medication for her daughter.

A regular speaker surrounding the issue of medical cannabis Vera Twomey can be credited with bringing the issue of cannabis into the public sphere in Ireland. Her exceptional determination and can-do attitude can be given significant credit for the positive changes made by the government to move the issue of cannabis in the Rep of Ireland forward.

From Cork County in Ireland Vera lives with her family and continues to lobby tirelessly for fair access to cannabis medicine for all.

Episode Summary

• Vera’s daughter Ava was born in 2009, when she was around 4 months old she suffered a 45-minute seizure which left her hospitalised.
• After extensive testing, Vera was called into hospital where she was told that her daughter would not walk or talk, that she would be wheelchair-bound, and that it was unlikely that she would live beyond the age of three.
• Vera describes the diagnosis as ‘the most devastating news that a first-time parent can receive.
• Over the next seven years, Vera and Ava spent at least 5 months of the year within the hospital, trying to manage the condition.
• Ava was given every medication which was available for the syndrome, which all eventually failed even if they gave short-term relief.
• At one stage, Ava was taking 15 tablets per day and was experiencing side effects such as drooling and lethargy - amongst seizures.
• After joining the organisation Dravet Syndrome UK group, Vera began to learn about medical cannabis and how American parents were successfully using it to treat their suffering children.
• In October 2016, Ava started taking Charlotte’s Web Advanced CBD Oil - which had an unprecedented effect.
• It resulted in 16 seizure-free days, and 12 seizures across three months for Eva - a marked reduction in seizure activity, and a tremendous breakthrough for the family.
• In June 2017, Vera was forced to leave Ireland after struggling to access THC-based medications and so took her 4 children to The Netherlands by car in search of accessible cannabis-based medications.
• In Holland, a doctor prescribed Ava with both CBD and THC-based treatments.
• They stayed there for 6 months before the Irish government would allow them home.
• Before the family left for Holland, communications with the Department of Health in Ireland had completely broken down.
• In response to this, Vera walked 260km in protest from Cork to Dublin in a bid to get health ministers to listen to her concerns. By the time she made it, thousands of ordinary people had joined her.
• Connecting with other parents who are also fighting to access life-changing cannabis-based medicines has been a fundamental support line for Vera through her journey.
• Vera believes that education for doctors around the prescribing of cannabis-based medicines is missing. She believes that not only consultants need to be able to prescribe medical cannabis, but GPs should too as they are the first point of call for most.
• In January 2021, the Irish Government announced the funding of the Medical Cannabis Access Programme which makes it possible for a medical consultant to prescribe a listed cannabis-based treatment for a patient under his or her care as long as they meet certain conditions.

Quotables

• ‘When we started on this journey we were so alone, we didn't know where to turn’ 30:40
• ‘I never intended to be known for issues surrounding cannabis, but when there are children involved… morally it is the right thing to do to share that with other parents to give them the opportunity to maybe find some improvement for their child’s life’ 31:17

Resources

Join Vera on Twitter: https://twitter.com/veras1

Buy Vera’s Book: https://www.amazon.co.uk/Ava-incurable-reluctant-activist-campaign/dp/1781176833

Dravet Syndrome UK: https://www.dravet.org.uk/

About Me

I'm Anuj Desai - a commercial advisor, lawyer and founder of Canverse - a commercial and legal consultancy helping founders, entrepreneurs and businesses navigate the emerging cannabis industry.

Please follow The Cannabis Conversation to keep up to date with news and insights from the industry, and get in touch at [email protected] to discuss how I can help your business move forward in the cannabis sector!

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