Mum calls for emergency measures to continue

A tireless medical cannabis campaigner, who secured the delivery of her daughter’s prescription during the pandemic, is calling for emergency measures to remain in place.

Vera Twomey, of Cork, Ireland, fears the delivery of her 10-year-old daughter Ava’s medical cannabis prescription is in ‘considerable doubt’ in the long-term.

Prior to the pandemic, Vera travelled to The Netherlands every three months to collect medicine for Ava, who suffers from a rare form of epilepsy known as Dravet Syndrome.

When travel restrictions were introduced to curb the spread of Covid-19, Vera fought to secure access to her daughter’s prescription, with then Minister for Health, Simon Harris, launching an initiative to enable patients to have medical cannabis delivered to their homes.

But now Vera has raised concerns that the future of this arrangement is in doubt once Covid restrictions are lifted and is calling for the measures to be extended to give patients and their families much-needed security.

“It’s a really troubling time for us, as we have no guarantee that this scheme is going to continue in the future. Once the restrictions are lifted it appears that we may have to travel again,” Vera told Cannabis Health.

“We are extraordinarily grateful for the assistance that we have had to allow the medication to be delivered on a temporary basis, but it is essential that it continues.”

She added: “Covid is such an extraordinary and dangerous set of circumstances, even if the restrictions are lifted, how do we really know it’s safe to travel?”

For years Vera campaigned for access to medical cannabis after conventional pharmaceuticals failed to treat Ava’s symptoms, leaving her hospitalised for months at a time.

At four months old, doctors warned that Ava may not live past the age of three. But since taking medical cannabis she has been able to attend school and hasn’t had an emergency hospital admission in four years.

Despite the legalisation of medicinal cannabis under The Medical Cannabis Access Programme in Ireland last year, only two products have been approved for use in the scheme.

As a result, until the pandemic hit, Vera was forced to travel overseas to collect Ava’s Bedrocan prescription, which is not included in the programme.

“The difference it has made to have the medications delivered is immense,” she said.

“They opened a window of humanity because they recognised that it would be extremely dangerous for parents of sick children to be travelling to other countries, but once things go back to normal, it looks like that that window will be firmly closed again.

“We will be expected to be the only citizens in the Republic of Ireland who are forced to travel to Europe to collect a prescription.”

Vera feels it is unjust and ‘inhumane’ that the parents of seriously ill children are forced to take on the additional stress of travelling and being away from their families.

“Even with medical cannabis on board Ava’s Dravet Syndrome is chronic in the extreme, she is a person who needs 24 hour care  and that’s what my job should be, she said.

“My place is here with the family, not begging the state for security, booking flights and travelling every 12 weeks.”

The family’s story was recently published in a book, ‘For Ava: An incurable illness, A reluctant activist, An ongoing campaign’ in which Vera recounts their emotional journey in the hope of inspiring others in similar circumstances.

But as the title suggests the battle is still ongoing.

She says it would mean ‘everything’ to her and Ava’s family to secure the delivery of medical cannabis in the long-term.

“It would mean having peace of mind but it would also mean that our medicine was being recognised on a par with others. People that are accessing medical cannabis shouldn’t be treated differently to other people,” Vera added.

“The Government deserves credit for stepping in and helping in such extraordinary circumstances, but they can’t take it away from us now.”

Cannabis Health has contacted Health Minister Stephen Donnelly and the Department of Health for comment.