THE HEALTH Service Executive (HSE) has pulled the plug on funding for a 14-year-old Dublin boy to travel to the US for what his mother describes as “life-essential treatment” not available here.
Adam Costello-Doherty has been travelling to the Paediatric Centre of Rare and Complex Diseases in Newark for the past seven years for treatment of common variable immune deficiency (CVID). Up to now, treatment has been funded by the HSE under its Treatment Abroad Scheme, availed of by filling out an E112 form.
The treatment in the US was recommended by a consultant at Our Lady’s Hospital for Sick Children in Crumlin, Dublin. At first, the Junior Cert student was travelling to the US every three weeks but for the past few years he has needed to travel only every six months.
He is now due in Newark for another six-monthly check-up and another injection of a vaccine that has started to fire up some of his own immunity. This time around, when his mother, Judi Costello, applied for assistance under the HSE Treatment Abroad Scheme, it was refused.
Ms Costello said she received a letter from the HSE on Monday saying her application was being refused because the treatment was “not being received within the public health system of another EU/EEA member state or Switzerland” and because “the hospital involved does not accept model form E112 to cover the cost of the treatment”.
She cannot understand why this is an issue now when it clearly never was before. She insists the HSE has never had a problem before funding his treatment in the US under the scheme. The scheme covers the cost of treatment and assists with travel costs.
Ms Costello is frustrated and upset at this latest turn of events, pointing out that she has seen other patients die of CVID. “I don’t want that for Adam. I want the best for my child. Is there any harm in that, just to want to keep my son alive? I’ve crossed all the T’s and dotted all the I’s. It’s very unfair . . . Adam’s treatment has been such a huge success to date. We don’t know how it will continue to go but we are very hopeful,” she said.
Adam, she adds, is now living life to the full and loves sea scouting and flying, despite having Pandas syndrome, Tourette syndrome, obsessive–compulsive disorder, attention-deficit disorder, asthma and kidney issues as well as his primary immune deficiency.
She says there is nowhere in Europe she is aware of that Adam can receive the same treatment and care as in the US. She criticises the bureaucracy of the Treatment Abroad Scheme.
Asked to comment on why it has declined to cover Adam’s treatment in the US now, the HSE reiterated what it said in its letter to Ms Costello – that the Treatment Abroad Scheme only covered treatment in another EU country or Switzerland. It did not explain why this never stopped it funding the treatment in the US before.
“Ms Costello was issued with a new application form should she wish to apply for the issue of model form E112(IE) for treatment within another EU/EEA member state or Switzerland,” it added.