HSE reverses decision on medical care for Dublin student with rare condition

A DUBLIN teenager is to resume “life-essential treatment” in the US next month after the Health Service Executive (HSE) reversed its decision to withdraw funding for his visits to a New Jersey hospital.

Adam Costello-Doherty (14) is to return to the Paediatric Centre of Rare and Complex Diseases in Newark on January 7th for treatment, which is not available here, for common variable immune deficiency (CVID).

The treatment was recommended to his family by a consultant at Our Lady’s Hospital for Sick Children in Crumlin, Dublin, more than seven years ago.

Initially, the Junior Cert student was travelling to the US every three weeks, but over the past few years this has been reduced to once every six months.

In September, his mother, Judi, applied for funding for an appointment under the HSE’s Treatment Abroad scheme; however, the request, made by filling out an E112 form, was refused.

The HSE said 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”.

This response prompted Ms Costello to publicise Adam’s need for the “life-essential” treatment in the media.

She has since received a letter from the HSE saying her appeal against the refusal of funding for overseas treatment has been successful and that assistance towards the cost of medical care will be restored.

The HSE said, having reviewed the case to see if treatment was available in the EU, it decided that Adam’s care was best provided by the hospital in New Jersey.

A spokesman for the HSE yesterday said he could not reveal what had prompted the change of heart, as the executive did not comment on individual cases.

Ms Costello said it was “a huge relief” that Adam would be able to resume the treatment in January following the HSE’s surprise decision to withdraw the funding.

“Out of the blue they just decided to stop it. It was bizarre and I still think it is,” she said.

“But I hope this sets a precedent for all other kids travelling abroad for essential treatment.”

Ms Costello said the HSE has drafted a policy document on overseas treatment assistance and that she hoped to meet officials from the Department of Health and Children and the HSE to discuss hiring an immunologist who could work at St Vincents hospital in Dublin and Crumlin children’s hospital.

“You will still need to fly rare and complex cases abroad but it could certainly cut this kind of thing down,” she said.

Ms Costello said Adam was “delighted and relieved” by the news, as he had started to suffer from migraine headaches because of stress caused by the situation.

She said, despite having a number of underlying conditions, including Pandas syndrome, Tourette syndrome, asthma and kidney issues as well as his primary immune deficiency, Adam was now living life to the full and was on his way to the Top Gear show in the RDS last night to celebrate.