Inquest Recommends ‘Ava’s Policy’ for Unlicensed Medicines
“Ava’s Policy”: Inquest Jury Calls for National Oversight on Unlicensed Medicines After Teen’s death
Cork, Ireland – A Cork inquest jury has recommended the establishment of a national policy to oversee the administration of unlicensed medicines in Ireland, following the death of 13-year-old Ava Barry.Ava’s mother, Vera Twomey, tirelessly campaigned for access to medicinal cannabis to treat her daughter’s severe epilepsy.
Ava suffered from Dravet Syndrome, a rare and debilitating form of epilepsy that caused frequent seizures. After a lengthy battle, Twomey secured permission from then-Health Minister Simon harris in 2017 for Ava to use medicinal cannabis.
The unlicensed cannabis treatment significantly reduced Ava’s seizures by up to 75%, dramatically improving her quality of life. However, Dravet Syndrome is a progressive condition, and ava’s health gradually declined.She passed away at Cork University Hospital on May 27, 2022, at the age of 13.
During the inquest, Consultant Paediatric Neurologist Olivia O’Mahony highlighted difficulties encountered at the hospital regarding the administration of Ava’s unlicensed medication.She emphasized the need for a national solution to address this issue.
The jury’s recommendation for a national policy,dubbed “Ava’s Policy” by Twomey,aims to create a framework for the supervised administration of unlicensed medicines.
“Ava was funny. She was kind. She ruled the house,” Twomey told RTÉ News. “I’m very, very happy that the jury have come to the decision to put in place a protocol into the future – Ava’s protocol.”
Twomey hopes ”ava’s Policy” will prevent other families from enduring similar struggles.
in her poignant statement to the inquest, Twomey described Ava as “breathtaking, funny and fabulous,” an utterly inspirational young girl who never gave up despite the challenges posed by her condition.
“Her enthusiasm for life bubbled over and when she was well, she made the very most of every possibility to be involved in everything,” Twomey said. “Yes, the seizures butted in, but she never gave up and that became the family mantra: never give up; Ava never gives up, so we won’t either.”
While deeply missing Ava, Twomey finds solace in knowing her daughter’s legacy will potentially help others. “She lit up a room, wherever she was,” Twomey said. “Her smile took up her whole face and she infected everyone she encountered with joy. She was, then and now, the most precious of gifts and an angel on earth, as much as she is an angel now away from our sight.”
“Ava’s Policy”: Inquest Jury Calls for National Oversight on Unlicensed Medicines After Teen’s Death
Cork, Ireland – A Cork inquest jury has recommended teh establishment of a national policy to oversee the administration of unlicensed medicines in Ireland, following the death of 13-year-old Ava Barry. Ava’s mother, Vera Twomey, tirelessly campaigned for access to medicinal cannabis to treat her daughter’s severe epilepsy.
Ava suffered from Dravet Syndrome, a rare and debilitating form of epilepsy that caused frequent seizures.After a lengthy battle,Twomey secured permission from then-Health Minister Simon Harris in 2017 for Ava to use medicinal cannabis. The unlicensed cannabis treatment significantly reduced Ava’s seizures by up to 75%, dramatically improving her quality of life. However, Dravet Syndrome is a progressive condition, and Ava’s health gradually declined.She passed away at Cork University Hospital on May 27, 2022, at the age of 13.
During the inquest,Consultant Paediatric Neurologist Olivia O’Mahony highlighted difficulties encountered at the hospital regarding the administration of Ava’s unlicensed medication. She emphasized the need for a national solution to address this issue.
The jury’s suggestion for a national policy, dubbed “Ava’s Policy” by Twomey, aims to create a framework for the supervised administration of unlicensed medicines.
“Ava was funny.She was kind. She ruled the house,” Twomey told RTÉ News. “I’m very,very happy that the jury have come to the decision to put in place a protocol into the future – Ava’s protocol.”
Twomey hopes “Ava’s Policy” will prevent other families from enduring similar struggles.
In her poignant statement to the inquest, Twomey described Ava as “breathtaking, funny and fabulous,” an utterly inspirational young girl who never gave up despite the challenges posed by her condition. “Her enthusiasm for life bubbled over and when she was well, she made the very most of every possibility to be involved in everything,” Twomey said. “Yes,the seizures butted in,but she never gave up and that became the family mantra: never give up; Ava never gives up,so we won’t either.”
while deeply missing Ava,Twomey finds solace in knowing her daughter’s legacy will perhaps help others. “She lit up a room, wherever she was,” Twomey said. “Her smile took up her whole face and she infected everyone she encountered with joy. She was, then and now, the most precious of gifts and an angel on earth, as much as she is an angel now away from your sight.”