VERA Twomey has reacted with disappointment to news that the HSE is not expected to continue to deliver medical cannabis after the coronavirus restrictions are eased.
Sinn Féin TD for Cork North Central Thomas Gould received a reply from the Minister for Health’s office, which suggests that the current delivery of the medication will be curtailed once Covid restrictions are lifted.
Long-term campaigner Vera Twomey, whose daughter Ava Barry suffers from Dravet’s Syndrome, said: “I can’t express how concerned we are. I personally am upset with myself for giving myself the space to hope that something was going to be resolved.
“The email is bad news. It has dashed our hopes. I will stay positive and hope that the communication between the Minister and the Department is poor.”
Deputy Thomas Gould told The Echo that he would raise the matter once again this week with the relevant authorities.
“The official response was that this was only a measure brought in during the pandemic and when the health crisis is over, it will be dissolved. It is awful news for the family. It makes no sense. The procedures had been working very well all year.
“Expecting families to travel over makes no sense. I have already written back to the Minister for Health and I will be raising it once again with the Taoiseach. They all have sympathy for her but don’t want to do anything for her it seems,” he added.
Following an extensive campaign, Ava Barry was approved to use the treatment legally back in 2017. Medicinal cannabis has controlled her seizures very successfully in the intervening years.
Vera is, however, concerned about resuming travel to the Netherlands in a post Covid era to collect the supply due to Ava’s vulnerability.
“Realistically we wouldn’t have Ava now if we didn’t do what we did back then. They can’t really expect me to travel to the Netherlands on a plane, train and tram and do it all back again. This would potentially bring Covid back for her to lose her life.
“There is no way I am going to do that. Even if the vaccine comes in, this could raise its head again and I wouldn’t feel comfortable travelling over and back. Hopefully, they will see sense. Ava is very vulnerable. Her immune system is very weak. The delivery which was established back in April has been working very well. We are hoping they will continue it. That is all we are looking for,” Ms Twomey said.
Vera, who lives in Aghabullogue, confirmed that her 11-year-old daughter is currently doing very well. “This time of year can be difficult as she picks up every bug. It can take time to build her back up again. She missed a bit of school, but we are very happy with her overall. She is a great girl. During Covid, we have had to be so careful. We have been restricting everything. She is in good form, however,” she added.
Ms Twomey is determined that she will keep battling for access to medicinal cannabis.
“The medication is working. We are just appealing for the powers that be to keep it going. The email is worrying. I will stay positive and hope that the communication between the Minister and the Department is poor. We will never give up. There is no such option.”