My daughter’s health is being held to ransom in a tawdry battle over value for money
MY DAUGHTER loved running, pushing herself in crosscountry races. She still loves chopping about on the hockey pitch and gambolling about with her super bunch of friends. But my beautiful 17-year-old daughter Dani has cystic fibrosis, an inherited chronic disease that affects the lungs. After a flare-up of the disease, she had to give up running altogether, and while she still lives an action-packed life, when CF takes hold there is little time for fun with friends.
She has been to hell and back on more than one occasion due to this killer disease.
And even when she’s well she has nights of violent coughing. She insists on going to school even after a full night of coughing. She just wants a normal life, a life uninterrupted by regular bouts of pain and suffering.
We, her parents, want to give her just that – a full life, just like any of her friends.
There has been a lot of coverage in the media during the past week about the plight of people with CF who live with this sad and appalling disease. They have highlighted the controversy around the cost of a drug, Orkambi, on a value-formoney basis.
The drug has been proven to save lives but it is in limited supply in this country because its makers Vertex wants the State to pay €160,000 a year for every patients who uses it. The HSE recommends paying €30,000.
My wife Anne and I feel truly blessed to have Dani in our lives. Full credit must go to her carers in the children’s hospital in Tallaght, where Dani, our middle child, is much loved and well cared for. But every parent with a sick child wants to find that cure.
The fact that there is a medicine which could help Dani but she can’t have it is both galling and humiliating. Our child’s health, her life, is being held to ransom in a battle over value for money. There is a price on our daughter’s health.
Dani’s life is different in many ways to that of her peers, but that should be celebrated and respected.
Sadly I can’t see respect for this difference in the cynical disregard by all sides in this dispute for the pain, deep fear and uncertainty that mark her passing days.
This year we celebrate 100 years since the Easter Rising. Both my grandfathers took their part in that struggle to create a nation and establish our identity as Irish. They were quiet-spoken men who did what they felt was right.
The celebrations were dignified and respectful. Watching the parade pass through the streets of Dublin at Easter this year was emotional.
As a father with a sick child depending on the efficacy of the health service it was a visceral experience to watch our first responders march past locations where scenes of death and sacrifice helped forge our nation a century ago.
IT WAS a proud moment for us as a family, one that we will cherish. But the treatment of CF sufferers debases the spirit of the Proclamation read out at the GPO, a Proclamation that calls upon us to cherish all the children of the nation equally.
The same genes that gave us Michael Collins, James Joyce, Ronnie Delany and Conor McGregor are the genes bestowed upon our daughter Dani too. We find it good enough to rightly celebrate our heroes, but not to care for those whose only crime is to be the child of carriers of a gene. Many people like myself and my wife are silent carriers of the gene that causes cystic fibrosis without it having any ill-effect on us. When both parents are carriers, there is a one-in-four chance that both pass on the CF gene.
This gene is a map of our history: a nation bedevilled by poverty, inequality and injustice. In truth, you could say CF is one of the last negative legacies of our past.
Cystic fibrosis is the most commonly inherited disease in Ireland, and with one in 19 people here carrying a copy of the gene we have the highest incidence of CF in the world.
We have found a way to make peace on our island, we found in our hearts a sense of justice that is recognised the world over.
We are seen as leaders and commanders in many areas including conflict resolution.
But when you scratch the surface of that respect, you reveal a failure as a people to protect those most vulnerable in our society. I think that both my grandfathers, had they been aware of the unintended legacy they bestowed on their greatgranddaughter, would not be proud of the treatment afforded to her by both the State and the corporation Vertex.
Looking for a way forward, the recent megaphone diplomacy showed that the approach to these negotiations does not pass muster.
As a litigation lawyer, I am frequently involved in negotiations. I have found that every problem can be solved: you may not find the ideal answer or the final answer to a complex problem but you can find a solution by remaining in the room.
However, in this case, it is clear that each party wants to get their ‘spake’ in first. A greater than five times difference between an asking and selling price makes a mockery of meaningful negotiations.
That the public knows so much about the relative position of both protagonists in this drama speaks volumes – it makes a nonsense of any nondisclosure clauses agreed upon by both sides.
Both the State and the corporation are clearly playing for high stakes here, but unfortunately those stakes are being measured in financial, not human terms.
WE ARE dealing with a corporate entity in the ruthless pursuit of profit by people clearly holding the share-holders’ interests above human life. In respect of the health services, it is not helpful for me or anyone connected with this topic to personalise the debate. I was saddened to hear the discussion on RTÉ’s Claire Byrne Live this week when the language used by health representatives was intemperate and not conducive to agreement or negotiation.
There is a need for a voice to be heard in this discussion, a voice talking in a commercial, humane and most importantly non-combative manner.
The alternative is a brutal and final price paid by those who are currently excluded from the room.
Like so many others, Dani’s wellbeing and life itself are being weighed in the balance … in a process that nobody trusts. Both sides need to allow an advocate who will speak for the patients in a calm and nonhysterical manner.
Otherwise, the fallout of the collision between these two sides will destroy one small group of people, a group of people of which my daughter is one.