Update 2nd December 09…
Congratulations to Judi, Tom, and Adam with the announcement that the HSE have approved their appeal. Common sense prevailed and hopefully Adam will be on the way to get his treatment soon.
It’s great news, and we whole-heartedly wish him well and all the best for the future.
I’ll leave the original article as below, and we’ve closed the email campaign so a big thank you on behalf of Judi to everyone who voiced their support.
If Adam’s story is new to you…
Adam Costello-Doherty is a 14 year old boy who suffers from CVID (common variable immune deficiency), but due to medical expertise in the US he is one of the few who hasn’t needed a marrow transplant.
The treatment in the US was recommended 7 years ago by Our Lady’s Hospital for Sick Children in Dublin, and initially he was travelling to New Jersey every 3 weeks to the Paediatric Centre for Rare and Complex Disorders. He has proven to be a fantastic medical success, so much so he is now a case study for PHD students in Sweden, and these days only needs follow-up injections (albeit life essential) every 6 months.
Now all the good work is in jeopardy. The HSE has ruled he is no longer eligible for treatment in the US, and that his mother Judi should seek alternative arrangements in Europe under the E112(IE) scheme. There is one major flaw however – nowhere in Europe can treat him!
The six monthly injections are relatively inexpensive compared to the cost of the earlier care, and it seems crazy that the HSE should put Adam at risk when he’s made such good progress. It also seems unjust that the HSE should suddenly close the door when they were willing to support Adams treatment in the US in the first place.
Judi is a brilliant mother who has done everything she can to ensure her son gets the best chance possible, and you have to admire her for that. On top of CVID Adam also suffers from Pandas syndrome, Tourette syndrome, obsessive–compulsive disorder, attention-deficit disorder, asthma and kidney issues, yet he is still managing to live life to the full.
It’s hard to see the HSE logic here whereby a success could be turned into a failure, and common sense tells you there’s only one way to deal with this…
The HSE agreed to treat Adam for the past eight years in the US under the E112 (IE) Scheme, and should continue to support his treatment in the US until a suitable alternative is available under the E112(IE) scheme.
Here’s Judi’s Facebook Group – if you’re on FB join the group and help her raise further awareness of her son’s case.