OPINION:The crimes committed against the vulnerable in this country are great and many. I – we, all CF sufferers – don't get another chance at this. Life comes only once. We deserve proper healthcare, writes ORLA TINSLEY
ON TUESDAY, instead of going to my friend’s funeral, I stood beside a wall covered in graffiti and got my picture taken for a poster that says “Irish War Crimes”. I would rather have been at the funeral of my friend Heather, who passed away from cystic fibrosis the previous week – but I wasn’t. I know she would have wanted me to continue fighting, even though she now cannot.
The crimes committed against the vulnerable in this country are great and many. There is the medical card scandal, the cervical cancer vaccine scandal and, once more, the cystic fibrosis scandal.
I have cystic fibrosis and I have a fantastic life. I am in college, have amazing friends and spent the summer bumming around America, just like any stereotypical 22 year old.
I have an illness that will eventually kill me, but it does not stop me from living my life. What stops me from living my life is the bureaucracy in this country. The fact that the Government did not have the courtesy to inform people with cystic fibrosis that the funding had been postponed for our 36-bed, single en suite unit shows the level of disrespect that exists when it comes to some of the most vulnerable in our country.
Since I heard the news on Thursday night that there will be no funding until 2011, at the earliest, I have been going non- stop. I am exhausted. It is just one blow after another in this situation.
It was suggested by our Health Minister, Mary Harney, that the private sector could aid in building the dedicated CF unit.
It is baffling that she could suggest this now. When there was money, it was not built. Now that we have no money, the economy is being blamed and they are seeking alternative help.
I met Mary Harney in February 2008 and discussed an interim measure that would have held 26 en suite rooms at St Vincent’s hospital in Dublin. It was a prefab solution, but the architects at St Vincent’s were working closely with the Cystic Fibrosis Association of Ireland and with an architect and his son, who also happens to have CF.
They approached Harney with the proposal initially in 2007, but it was rejected. I approached with it again in 2008, but it was rejected. I was told: public money would pay for this, it was allocated, dedicated – we had nothing to worry about.
Then came Thursday’s news. . .
I have been getting a lot of calls from mothers of younger children with cystic fibrosis in the past few days. It’s so difficult for them now.
Even if the rest of us have suffered irreparable damage by rotting our lives away on infectious wards, the next generation would be okay. It was comforting to think that we had all worked so hard, so they wouldn’t have to.
On Joe Duffy’s Liveline during the week, a parent came on and listed the names of all the people who have raised awareness about the need for facilities for CF patients who were now dead. She said she was so sick of hearing new names, new people who would raise awareness to a certain level and then, sometime later, read their death notice.
It really hit home for me: we don’t get another chance at this. Life happens once and we have a right to live it, as well as we possibly can.
We keep our end of the bargain with CF. We spend two hours in the morning and two hours in the evening taking our medication and doing what is necessary to be able to go to college, work, spend time with our families or travel. We keep our end of the bargain; now it’s time that Mary Harney, the HSE and the Government keep theirs.
We have a hospital system that is slowly killing our CF population. When a person with CF reaches the end stage of their illness – after their lungs are damaged irreversibly beyond repair – they need a double lung transplant.
Currently the Government has a contract with the Freeman hospital in Newcastle, England, and the Mater hospital in Dublin. The Mater hospital has performed one transplant on a cystic fibrosis patient since it started accepting them on the list in 2007.
People are dying waiting on that list.
We are going to die from cystic fibrosis anyway, but we have a long life that can be lived before that happens. If we take care of ourselves, we can achieve whatever we want. We cannot achieve what we want when the system that we have to be dependent on is ignorant of our existence.
We deserve a chance at life. We deserve proper healthcare. We deserve to be free from the fear that comes from the invisible infections that swarm around our wards, the fear of watching our friends die.
The freedom from these fears is a basic human right.
Yesterday morning I was travelling to Leinster House to launch Irish War Crimes, our campaign for the healthcare that was promised to us. I was listening to Bob Dylan’s The Times They Are A Changin’.
I was thinking of Heather and how my mother told me that at her funeral the priest was discussing his outrage at the HSE on the altar. I was thinking about how at Heather’s graveside, her father was talking to my mother about the war crimes being committed here in Ireland.
Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.
Fighting is what people with CF do best and it is now the only option we have.
More information on the Irish War Crimes campaign is available from the CF Association website, www.cfireland.ie