The mum of a teenager with cystic fibrosis (CF) says she has “lost all hope” in the State as she watches her beautiful girl deteriorate when a €160,000 drug could give her quality of life.
Heartbroken Hazel Robinson (32) is living in a cabin with her two young sons in her sister’s back garden in Clontarf.
She makes a daily visit to see desperately ill daughter Gypsy (14) in Crumlin Children’s Hospital.
The mum-of-three has been forced to live between her home in Longford and Dublin due to hospital stays.
Last year Gypsy spent eight months as an in-patient.
Hazel has campaigned tirelessly for the best medical treatment for Gypsy but has reached breaking point, as the hope of ever gaining access to Orkambi, an American-produced drug, slips away.
“Imagine dreaming every night of the answer to give your child a better life, to free them from pain and you wait and pray,” she said.
“Then, after so long waiting, you realise this drug is there but you can’t give it to her.”
The HSE and Boston pharmaceutical company Vertex have hit an impasse over the price of the drug.
The Government insists that it remains too costly – even though it could give Gypsy and hundreds of patients like her a vastly improved quality of life.
Orkambi, which improves lung function and reduces the need for hospital admission, would cost the health service €160,000 per patient annually, or €400m over five years. The HSE is committed to paying €75m, which would still make it the sixth most expensive drug in Ireland.
While the debate continues, Hazel, a UCD graduate, worries how much longer her daughter has to wait.
“I know it’s really expensive, but on the other hand this State has squandered money,” she said.
“Look at how much was spent on water meters and it really makes me angry that the Government has just introduced €2.2m salary top-ups for TDs and senators.
“I can’t help getting angry, crying, shouting, because I’ve lost all hope in this State. There are children dying and this State can waste money on things like that.
“I was sitting in hospital watching my child coughing up a pint of blood. Now, just stop and imagine that for a minute.”
Patients don’t usually live beyond their 30s and this is a horror the mother and daughter have had to confront.
“From the moment she was born, the doctors told me what her life expectancy was likely to be and I grieved from that day on,” she said.
“It’s never stopped. But to watch her living in hospital, isolated from her little brothers, who she adores, Theo and Tyler, her friends, me. To be so ill – it’s breaking my heart.
“Gypsy is a beautiful girl. For such a loving, peaceful girl to go through such hell just isn’t right when there’s an option there to help her, to help all sufferers.
“I’m angry,” she said. “My country has let me down.
“My daughter’s lung damage has worsened in the last year and that is irreversible.”
An HSE spokeswoman told the Herald it met Vertex this month as part of discussions about access to Orkambi and Kalydeco, another CF drug.
“Work is ongoing and both parties are exploring all possible options,” they said.
“Minister [Simon] Harris is very much aware that this is a stressful time for CF patients and their families and wants to see them receive access to the best, most innovative treatments possible at an affordable price,” a spokesman for the Department of Health said.
“The HSE has re-entered into negotiations with Vertex, with a view to reducing the cost of the drug significantly.
“The HSE’s drugs committee will make a recommendation on the cost-effectiveness of Orkambi, taking into consideration the manufacturer’s latest price offerings.
This decision will be made on objective, scientific and economic grounds and the minister fully supports the HSE in its attempts to lower the exorbitant price.”
Ireland has the world’s highest incidence of the genetic condition, which strikes the lungs and digestive system.