Belfast Telegraph

Donegal family may have to sell farm and move to UK to save life of daughter (15) who needs 'one of the world's most expensive drugs'

By Harry Walsh, Geraldine Gittens, and Eilish O'Regan

A Donegal family may have to sell their farm for a fresh life in the UK where their teenage girl can receive a life-saving drug for a rare blood condition.

Maeve McGill (15) from Aighe, Ardara, requires a drug which costs €437,000 a year to treat her life-threatening blood disorder, Paroxysmal Nocturnal Haemoglobinuria (PNH), but the Republic's Health Service Executive (HSE) are refusing to pay for it.

Now, her parents, Pat and Teresa, are planning to sell their small farm two miles outside the heritage 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 pains 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 the Republic who are being refused the drug because of its cost and she is the youngest sufferer in the country. The HSE are currently funding six patients to receive the drug while the manufacturer are funding four patients.

Maeve was diagnosed two years ago after her mother brought her to their 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.

Speaking to the Donegal News 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 - either I live with this poor quality of life or I get the drug. It seems to be getting worse as time goes on and I am in hospital a lot more and for a lot longer,” Maeve said.

Her parents, Pat and Teresa McGill, believe it is unfair that the HSE are 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. There are ten people in the country on this drug and one child and seven other people here 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.

Maeve’s father said the drug is available on the NHS in the UK and if needs be they will sell up and move there.

“I don’t think we should have to  do this. My family have farmed her in Ardara for generations going back to the 1800s. I feel it is unfair on the whole family, not only affecting our youngest daughter Maeve, Teresa and me and our other children - Marina, Mary Claire and Philip.

“Teresa and I have never lived outside Donegal. The price of land has not risen in Donegal and how long would it take us to sell up, move and set up home in the UK with Maeve being sick?

“Maeve’s health is by far the most important thing for us. It is very hard to watch her being sick knowing there is a drug out there that can help. We know it is expensive. The HSE needs to put their heads together for Maeve's sake and the others who need it,” Mr McGill added.

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.

The drug’s development cost $1 billion and the condition is rare making the drug so expensive.

The HSE issued a statement today, saying it is "very empathetic towards those affected".

"[The HSE] is doing all it can to resolve the situation. Eculizumab is one of the most expensive medicines in the world. It is currently not approved for reimbursement in Ireland."

"The current price quoted is over €400,000 per patient per annum. This makes Eculizumab one of the most expensive drugs in the world, the cost of which would fund the running of a Primary Care centre in most small towns in Ireland."

 The HSE has been in ongoing negotiations with the pharmaceutical manufacturer seeking to reduce the cost of the medicine in Ireland, a spokesperson said.

"Currently, the asking price for Eculizumab in Drogheda costs more than in Newry. Consequently, the HSE is attempting to reach a more sustainable price for the medicine in Ireland in order to provide treatment for current sufferers of PHN and those who may develop the illness in the future."

"It is regrettable that, to date, the manufacturer has not been inclined to provide Eculizumab at a more sustainable price to the HSE and, thus, to Irish patients. This no doubt is a cause of much difficulty and distress for those PHN sufferers who are not being provided with the drug currently."

"The HSE greatly regrets this situation. However, it is important that pharmaceutical firms do not hold the Irish health service to ransom for the provision of any drug. It must be borne in mind that excessive prices charged by any pharmaceutical company for medicines will result in a reduction of services and other drugs/medicines provided to patients and clients throughout the country."

"The HSE continues to negotiate with the pharmaceutical firm in question."

Source: Irish Independent

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