'Grave error' in Government's new medicinal cannabis scheme

Vera Twomey, whose daughter Ava is severely epileptic but has been almost seizure-free since starting on medicinal cannabis, said most Irish patients are currently prescribed Bedrocan, a Dutch medicinal cannabis product, that they access under ministerial licence. Picture: Denis Minihane

A “grave error” in the Government’s new scheme to allow some medicinal cannabis products to be prescribed and funded for patients in Ireland is that it omits the drug already relied on by many, campaigners say.

The limits of the scheme, with few drugs and conditions approved for cover, will leave families unable to afford prescriptions for their sick children, which could lead to life-threatening crises, a group called the Irish Medicinal Cannabis Council has warned.

Vera Twomey, whose daughter Ava is severely epileptic but has been almost seizure-free since starting on medicinal cannabis, said most Irish patients are currently prescribed Bedrocan, a Dutch medicinal cannabis product, that they access under ministerial licence.

The Department of Health confirmed that 55 patients currently access medicinal cannabis from Holland via such licences. 

But the new Medicinal Cannabis Access Programme (MCAP), which will allow certain cannabis products to be prescribed and funded for patients with specific conditions, does not include the Dutch products.

"The exclusion of Bedrocan from the scheme was a grave error. They set up a programme that did not include the medications being prescribed to the vast majority of patients in the Republic of Ireland," Ms Twomey said.

Ms Twomey is one of 16 people out of 55 with a ministerial licence being refunded for medical cannabis by the State. Ava's medication costs €9,500 every three months.

“It’s not easy to come up with that money, almost €10,000, even for the first day.

"But a considerable number of families are not being refunded at all," she said.

“Some people are rationing the medication because they can’t afford it.

“You want to provide your baby with a product that alleviates their suffering, but if you can’t afford it, you’ll have to stretch it out.

It’s extremely dangerous. And it’s heart-breaking. It’s the ultimate impossible position. You have a medication that will work but you can’t afford it."

While Ms Twomey broadly welcomed the progress with the MCAP, she said it would help future patients rather than those already prescribed medical cannabis.

“I have been in contact with both [TD] Andreas Moynihan and Michéal Martin about this issue. I’m doing everything I can to find an avenue to include Bedrocan in the compassionate access [MCAP] scheme, to allow us to be funded in the same way as other patients."

Ava's condition is too fragile to simply switch medication to one of the drugs covered by the MCAP, Ms Twomey said.

Our consultant advised us that it would be deeply inadvisable to change Ava’s medication for bureaucratic reasons."

A spokesperson for the Department of Health said a prospective supplier of cannabis-based products can apply to the Health Products Regulatory Authority (HPRA), on behalf of the minister, to have a product considered for inclusion in the Medicinal Cannabis Access Programme.

But the Dutch authorities do not allow the commercial export of cannabis-based oils to wholesalers or pharmacies, they said.