Cassie Stephens (27) has been enduring up to 300 seizures monthly
Eoghan Dalton reports
The parents of a woman who suffers from a rare brain disease have gone public with an appeal for the Government to provide funding for the medication to treat the illness. Cassie Stephens, from Military Barracks in Ballybricken, was enduring up to 300 seizures each month due to her tuberous sclerosis. She also has tumours on her heart, lungs and brain as a result of the disease.
Her parents Mary and John saw the seizures plummet to roughly 20 per month after they began treating her with medicinal cannabis oil, which Mary said allowed her to develop a more normal parent-child relationship instead of being the girl’s carer. “I’m gradually becoming a mammy again,” she told The Munster Express. 27-year-old Cassie has been suffering seizures since the day she was born. She has the neurological capabilities of a toddler but has been able to develop a personality and interact with her parents and brothers since she started treatment.
However their respite turned to heartbreak after discovering they could not be reimbursed for the drug by the HSE similar to Cork woman Vera Twomey, who famously campaigned two years ago for her own daughter’s access to the drug.
Instead, Cassie’s parents will need to pay over €2,000 for each prescription as well as paying the cost of the flights to the pharmacy in Holland which sells the drug. Due to the drug’s limited shelf life, trips need to be made every few months. The family had saved up €3,000 for the first prescription and travel, and took out a loan for the second prescription of cannabidiol (CBD).Their case received national headlines in recent days after they were named in the Dáil and the Taoiseach did not directly address the ordeal facing the family. Dublin TD Gino Kenny raised their plight and told Leo Varadkar that as of August the family would no longer be able to afford Cassie’s treatment.
The Taoiseach directed the Deputy to an earlier response he gave to the Fianna Fáil leader, in which he said the Minister for Health was working on the issue and that no further update was to hand. The response provoked fury nationwide, but in Waterford it was the “final straw” for Mary Stephens. “When I heard (Cassie’s) name being mentioned and he didn’t even acknowledge it with a response, that was what made me want to go public,” she said. “It was the final straw. It’s that there wasn’t even any recognition of Cassie,” she added. Many of her friends and neighbours were unaware of the extent of the situation facing the family.
The HSE’s refusal has also angered her. Nine reasons are provided for refusing to reimburse her family, however the letter states immediately afterwards that “not all [of the reasons] might apply” to Cassie’s situation.
The letter goes on to list the reasons, including the use of CBD in different forms of epilepsy and unclear documentation in terms of the reduction of seizures. Mary maintains that documentation is available through Cassie’s GP and her consultant and has been made available to the HSE. Mary said the drug’s positive effects could be seen from the first day her daughter began taking it. “It was like someone turned the lights back on in her head,” Mary said, “She started smiling and reacting to me and her dad, she gets excited when she would hear her brothers come in the door.”
The Stephens are one of 16 families in Ireland who received licences allowing them to import drugs that would otherwise be illegal.
According to Deputy Gino Kenny (PBP) only three of that 16 have received financial reimbursement.
“The family still has to go to another jurisdiction, namely, Holland, to get the medication,” he told the Dáil last week. “According to their words and the clinical notes, we have learned that the product has made a dramatic difference to the daughter’s life.” It was only last Monday 10 June that the Stephens discovered they would not be receiving any reimbursement following receipt of a letter from the HSE. “Our savings are gone and we’re still paying off the loan we took out, in August this year we can’t afford her oil,” said Mary.
“We will keep fighting but I don’t know how long I can keep doing this, it’s hard to care for a disabled child and fight.”Mary said that without the medicinal cannabis, “Cassandra will end up back in intensive care where she was only last year, the seizures were so bad (with) 52 seizures in a 24 hour period….it caused her to break her two insteps”.