Cystic fibrosis campaigner Anita loses her fight for life at 24
Anita Slowey, 24, died after a long battle against the debilitating condition.
She came to national attention last October after writing an emotional open letter to then Health Minister Mary Harney and ex-HSE chief executive Prof Brendan Drumm, highlighting the impact of delays to service improvements on her and other patients’ care.
The native of Clones in Co Monaghan warned that despite a special cystic fibrosis unit being promised at St Vincent’s Hospital in Dublin for last year, it will not be ready until 2012 at the earliest.
The planned unit will give sufferers a bed in a room on their own to reduce exposure to cross-infection — a potentially fatal problem for CF patients.
“While for the HSE our unit is just one more headache they want to avoid, their false promises have cost me personally both emotionally and physically — even though I have survived.
“Every infection and sleepless night in St Vincent’s Hospital has slowly robbed me of a little more lung power, a little more energy, a little more spirit, and the will to survive has been slowly eroded away,” she wrote at the time.
Cystic Fibrosis Association of Ireland (CFAI) chief executive, Philip Watt, said the brave young woman was a “fantastic campaigner” for those suffering from the condition.
He added that her untimely death was “another reminder to ensure proper facilities are put in place”.
News of Anita’s passing came as Ireland’s oldest transplant patient, Brendan McLaughlin, alleged the health service is so badly funded those in power believe it is cheaper to let people with long-term conditions such as cystic fibrosis die than provide them with the care they deserve.
The 43-year-old, who also suffers from the illness, made the comment in a 26-page service review he distributed last week.
The Donegal-based patient said the health service is “suffering from a massive dose of stupidity” because public healthcare is being cut while other less necessary backroom costs remain.
“There has been a lack of imagination on how to build for the future. With many illnesses long-term and too expensive to treat, including cystic fibrosis, it is often cheaper to let them die.
“All I can say is Ireland’s graveyards will be very full, as no one cares,” his review read.
Ireland has the highest percentage of cystic fibrosis sufferers per head of population in the world, with just over 1,300 currently living with the condition.
This figure is three times higher than the average EU and US rates.
One out of every 19 people in Ireland also carry the cystic fibrosis gene, significantly higher than Britain’s one in 25 level.
* Ms Slowey’s family have asked for any donations to be made to the CFAI, c/o Peter McClave, funeral director, Cara Street, Clones, Co Monaghan.
THE country’s main Cystic Fibrosis (CF) charity has urged people to remember them in their wills.
The Cystic Fibrosis Association of Ireland (CFAI) launched its legacy campaign yesterday to coincide with Legacy Month which takes place this month.
The association said such bequests will go directly towards helping to build a better future for children and adults with CF.
The CFAI’s chief executive, Philip Watt, said thinking about life after we are gone is not something people like to spend time considering.
“By the nature of their illness, people in Ireland with CF live with these thoughts on a daily basis,” he said.
“So, after you have taken care of your loved ones in your will, why not make a bequest to CF? By doing so, you are directly helping to provide vital isolation facilities in hospitals, which will help to reduce the risk of cross infection and ultimately offer a brighter future to people living with CF in Ireland.”
The legacy campaign is being supported by solicitors who are encouraging clients to consider legacies for charities.
John Boylan, a managing partner with McNulty Boylan Partner solicitors, said a bequest to CFAI will not attract tax because it is a registered charity.
“We have found that since the start of the recession more people are remembering charities in their wills because they are finding it more difficult to contribute during their lifetime,” he said.
