Maeve McGill, 15, from Aighe, Ardara, Co Donegal, needs a drug which costs €437,000 a year to treat her life-threatening blood disorder, Paroxysmal Nocturnal Haemoglobinuria (PNH), but the HSE is refusing to pay for it.
Her parents, Pat and Teresa, are planning to sell their farm, two miles outside the town which has been in the family for generations, to allow them move to the UK to help their daughter.
PNH causes the destruction of the blood cells, leading to anaemia, fatigue, muscle pain and a high risk of blood clots and kidney failure. A third of sufferers would have died within five years until the development of the drug Soliris (eculizumab), a medication which controls the breakdown of red blood cells. The drug allows patients to live relatively normal lives.
Maeve is one of six patients in Ireland who are being refused the drug because of its cost and she is the youngest sufferer in the country. The HSE pays for six patients to receive the drug while the manufacturer is funding four patients.
Maeve was diagnosed two years ago after her mother brought her to the GP having noticed her eyes a yellow colour, when she finished dancing at a local Féis. Maeve is a third-year student at St Columba’s Comprehensive School in Glenties.
The haematologist at Letterkenny General Hospital, Carina McMahon, diagnosed PNH but the HSE will not pay for the drug for her.
Now Maeve must visit the hospital weekly to have her blood checked and as her condition progresses she is becoming weaker. Because she is on Warfarin she cannot play sports and is not allowed to do PE.
Maeve said she was delighted to learn there was a drug that could help her but was devastated to learn the HSE would not fund it.
“That someone would not give me something that would help my life which has been so restricted and changed by this condition... I would hope to get the drug in the future, but I don’t know what else I can do,” Maeve said.
Her parents believe it is unfair that the HSE is depriving their daughter of a normal lifestyle.
“She is sick and we are on tenterhooks when she goes out in the morning – is she going to end up in hospital? Her life is controlled by the fact she cannot get this drug. She deserves to live a normal life. We were stunned to learn there was a cure but she cannot avail of it,” Mrs McGill said.
They contacted all of their TDs and while Deputy Pearse Doherty raised the matter in the Dáil it always come back to the cost.
The HSE this week met with the manufacturers of Soliris seeking a reduction in the price of the drug so Irish patients could get it, however no agreement was reached on reducing it to a reasonable price.
The drug’s development cost $1bn. Soliris costs the same in the UK as it does here.