“What is my daughter’s life worth?”
That is the question Vera Twomey is asking of Health Minister Simon Harris after being told to change her eight-year-old daughter Ava’s medication to control her seizures caused by a rare form of epilepsy called Dravet syndrome.
The Twomey family celebrated the securing of a licence to import medicinal cannabis into Ireland just before Christmas.
However, they have been dealt a blow after being told by the HSE that the Bedrocan product Ava is getting from the Netherlands, which has eliminated her seizures, cannot be imported into Ireland under the scheme due to licensing and marketing issues.
In addition, the Department of Health is not prepared to cover the cost of the product under the Long-Term Illness Scheme.
Before being allowed to take Bedrocan, Ava was taking 16 tablets a day and suffering several life-threatening tonic-clonic seizures a day. Ms Twomey said Ava once suffered a heart attack after 17 seizures in the space of eight hours.
Ms Twomey and her husband have to travel to the Netherlands every three months to source the medication and bring it home at a cost of €4,500.
Since December, Ms Twomey said this has cost the family €10,000, some of which was drawn from a GoFundMe account that was set up to support them.
She added that the family can no longer sustain the cost but will not accept any more public donations as she feels the Government should pay for the medication. The family are not seeking any costs associated with travel.
Ms Twomey has been told the Long-term Illness Scheme can cover a different product, Tilray, with the same levels of THC and CBD medicinal cannabis oil from the Czech Republic but Ava’s neurologists have said this could pose a risk to her seizure control.
They said changing the medication would be “irresponsible” and “dangerous” and could lead to her suffering seizures once again.
Ms Twomey said she is “terrified” that her daughter will die if she is forced to change her medication.
The HSE and the Department of Health have both been contacted by the Evening Echo for comment but have not responded.