A FATHER WHOSE son suffers from daily spasms due to acquired brain injury from a stroke wants a treatment trial for cannabis-based drug Sativex to be expanded.
Brendan Flynn says the spray is used to reduce spasms in MS sufferers but that the remit of a trial is “too narrow” in excluding people with acquired brain injury.
The Wicklow father explains that his 37-year-old son Robert had a heart attack while in Miami Airport in 2011 and suffered a hypoxic brain injury when his brain was deprived of oxygen.
Brendan says his son is living in a care facility in north Dublin and is completely aware of his surroundings but is in need of constant care.
Robert occasionally stays at home with his family, such as this weekend when he’ll attend Ireland’s rugby match at Lansdowne Road, but is not able to live at home on an ongoing basis.
“Rob understands everything that’s going on around him but the damage that was done affected areas of the brain that deal with things like sensitivity and his ability to cope with pain,” Brendan explains.
He’ll move his lips up and down but you’re not getting any sound, but a lot of the time I can make out what he’s saying. If not I can go through my process, asking him ‘is it your right foot, is it your left foot, is it your this?’
Brendan says that Robert suffers muscle spasms every day and night; and that the spasms also cause him to sweat profusely from head-to-toe, leading to a loss of fluids.
In recent times, Brendan explains that Robert is now dealing with a worsening of his condition with his feet turning inwards and downwards and his fingers turning outwards.
He explains that his son’s spasticity is treated with Baclofen but that the drug requires levels to be kept topped-up in the bloodstream by way of a pump.
Brendan says that Sativex is used to treat spasms in other conditions and that he feels his son’s quality of life would be improved if he could use the spray when needed.
“It means you are alert and awake, you can partake in other activities and if a muscle spasm comes on, you can use the spray,” he says.
Legal position
Flynn wrote to the Health Products Regulatory Authority a year ago and it confirmed that Sativex has been indicated as a treatment for MS sufferers if they are deemed suitable after a trial period.
In its response, the HPRA told Flynn that the trial programme did not apply to his son’s condition but that this did not legally preclude him from getting it.
Flynn was advised that Sativex was authorised by the HPRA in 2014 and is therefore not illegal but that it would have to be given in an ‘off-label’ prescription by Robert’s doctor.
Such a prescription is one for a medication beyond the stated use, in this case for MS, which Robert does not suffer from.
However, there are barriers even if such a prescription is made.
“Even if you get a prescription, you cannot fill the prescription here as it is not stocked by any of the chemists and they cannot get it from the distributor,” Brendan says.
You will have to go to the north of Ireland to get a prescription filled, which is ludicrous but that rules out any claim for reimbursement by the HSE. I am not interested in making any claim for reimbursement and would be more than willing to foot the bill myself to be able to buy it for my son.
Brendan says he has not received a prescription for Robert, but even if he did and it was filled in the north the treatment would not be administered by his care home because it is not specifically licensed for his condition.
“The only chance we have is that this medication is trialled on patients with acquired brain injury and that Robert is part of that trial. Or the scope of an existing trial is extended and he is included on compassionate grounds,” he said.
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