Remember Ava Barry?
Ava was the eight-year-old girl from Aghabullogue, Co Cork, Ireland, who suffers from Dravets Syndrome and who gained national fame after her parents launched a fight for her to be allowed to take medical cannabis as treatment for her severe seizures.
Under Irish law, Ava could not get an easy and expedited legal access to medical cannabis. Applying for a license to use medical cannabis in Ireland is a long and difficult process involving many doctors and specialists.
In order to be able to avail of the much-needed cannabis oil treatment quickly, Ava and her parents, Vera Twomey and Paul Barry, flew to the Netherlands instead.
Twomey said that cannabis oil is the only medication that works for her daughter, who used to experience multiple seizures in one day. On one occasion, the girl suffered a heart attack following 17 seizures within an 8-hour period.
For six months, Ava was under the care of a neurologist in The Hague who prescribed cannabis oil. Since taking the alternative medication, Ava has been seizure-free.
In December, Irish Health Minister Simon Harris finally signed a medical cannabis license for Ava. Upon hearing the good news, the family was able to return home and spend Christmas with Ava’s other siblings.
Family wants government to allocate funds for cannabis medication
Last week, Twomey held a press conference calling on Harris to include Ava’s cannabis medication under the long-term illness or LTI scheme. All of her previous anti-epileptic medication had been covered by the LTI scheme since 2010.
Ava’s cannabis oil medication from the Netherlands costs up to €5,000 every three months. So far, this cost had been met through the family’s GoFundMe page, as well as through their personal funds.
According to Twomey, epilepsy is an LTI and must therefore be covered by the LTI financing scheme.
Sinn Féin TD Jonathan O’Brien, who was present at the press conference, explained that in order to qualify for reimbursement of medication, the drug had to be exported by a pharmacy and also had to be imported by a pharmacy. He said that according to his understanding, the regulations in the Netherlands do not allow that arrangement.
The HSE (Health Service Executive) had confirmed that an Irish pharmacist’s importation of medical marijuana requires an export license from the country or state where the product was manufactured, as well as ministerial license to import.
The HSE stated that if an export license isn’t granted by another state, a particular formulation cannot be procured by an Irish community pharmacy. Drugs that are reimbursed by Ireland are dispensed by community pharmacists.
According to O’Brien the simple solution for this kind of problem was for the government to change its guidelines ruling the reimbursement of medical expenses.
Twomey shared that the HSE had suggested an alternative medication for Ava that could be reimbursed. However, their neurologist advised against it, saying that Ava’s seizure control is highly fragile and that it would be “dangerous and irresponsible” to change her medication.
In a statement following the press conference, Harris assured that the legal issues surrounding the development of a reimbursement process for medical cannabis products are being examined and that health officials are working to provide a resolution to the matter.
HSE finally agrees to reimburse medical cannabis expense
This week, the HSE has finally agreed to reimburse the costs for Ava’s medical cannabis from the Netherlands.
Twomey confirmed the good news, saying that the HSE and the Department of Health had called to inform them that they will reimburse the family for the cost of Ava’s medical cannabis and that they will continue to cover the medication moving forward.
This still means that they will have to fly to the Netherlands every few months to obtain the medicine, but Twomey said that this is progress in the right direction.
Featured image is from Vera Twomey’s Facebook page.