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A PERSON WITH cystic fibrosis can lose days, weeks or months of their lives because of long stays in hospital or extended periods of being unwell.
“I want to be a more reliable friend, a better family member. I want to be present. I want to not miss as many things. I want to be able to plan my life,” explains Clare Meleady, who right now can “never plan a day ahead”.
“Family and friends have to fall in with that. I have to see how things are in the morning. CF is just willing yourself well.”
Although she describes herself as just moving from the moderate to severe category of sufferers (with 42% lung function), the condition has a significant impact on Clare’s life.
Her daily routine of physiotherapy, exercise, rest and medication means she cannot work full time (although a completed course on reflexology means she can offer therapies to the delight of family and friends).
“The day is very structured,” she explains, noting that her 90-minute walk is now easier with the encouragement of her four-year-old dog, golden retriever Rupert.
However, there has been something more solid giving the 30-year-old Meath woman a glimmer of hope recently.
She is a candidate for the drug Orkambi which is yet to be approved by the Irish government after the National Centre for Pharmacoeconomics deemed it too expensive at €160,000 per year per patient.
The body advises the government after it assesses the comparative effectiveness and cost-effectiveness of drugs. It wants the makers of Orkambi to reduce the asking price down by five times.
Minister for Health Simon Harris told patients that the NCPE’s decision was not final and that it was part of a process.
“The pharmaceutical company has indicated it is willing to negotiate in relation to the cost of the drug with the HSE,” he said, adding that a discussion at European level is also desirable.
Those words kept alight a flicker of hope for Clare.
“I suppose when we got the news midweek – because Orkambi it is a light of hope – it kind of felt that the hopes were slightly dashed,” she told TheJournal.ie.
It was very upsetting. It’s an emotional drug because of the hope that it has attached to it. But we are not completely defeated and we are a very strong community. We are going to fight for this drug.
“You accept the condition when you have a genetic condition. You know that it progresses.”
Clare lost her younger brother to cystic fibrosis and related and unrelated complications last year. Although he has the same gene, he always knew he would be too sick to benefit from it.
For her though, there has always been an element of denial that “keeps you going”.
“That can be a good thing, as well,” she explains.
Hearing about Orkambi and how well some people are doing on it is brilliant. It means there is something available to us to help us live longer and make that life better.
“We will keep fighting until we can access it because we deserve a chance at that life. As we progress, it gets harder. To press pause on CF is a miracle really.”
And that’s what those doing well on Orkambi have said the drug achieves: fewer hospital visits, fewer antibiotics, more energy and easier breathing.
Dubliner Brian McCarroll is one of the handful of people to take part in the drug’s trial over the past three years.
In that time, he has never been hospitalised.
“I just have way more energy,” he tells TheJournal.ie. “I can get up earlier, I’m less tired. I can do more exercise, which in turn helps me to stay well. It puts all the symptoms at bay.
“I am really proud of myself for keeping well for the three years.”
Brian’s sister also suffers with CF but has yet to receive Orkambi. Speaking about her and other people in the community, he notes again how they are encouraged by his progress.
“If the Minister could see how well I’m doing. Our lives are changing. Just three to five per cent (better lung function) can give people the encouragement to keep fighting. It gets us to do the extra steps or the last few minutes in the gym. I see people raging about this – and that passion is the fight we need.”
Shauna Morrissey, a 24-year-old from Limerick, is one such patient with anger and passion – and an awareness about how vital that pause button could be.
She and her older brother are possible candidates for the drug.
“My parents have been waiting since 1984 for something like. They’ve dreamt of it. It’s not a cure but it’s the closest thing we have right now,” she says.
“The issue is time,” she says when asked what Simon Harris should do.
“We don’t have that on our side.”
#YesOrkambi
A social media campaign kicked off yesterday to put pressure on authorities to approve the drug in a timely manner.
The campaign, entitled Please Don’t Put a Price On Our Lives, features purple balloons being destroyed because of the NCPE decision.
Responding to questions from campaigner, Minister Harris reiterated that the process is ongoing and that there has been no refusal yet to fund Orkambi for those who need it.
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If we held candle light vigils for all that were unfortunate to die in hospitals because of inadequate or unprofessional procedures they would be occurring day and daily. This case has been hijacked for political purposes.
Or you could be less cynical about it and see that it was a heart wrenching story that people took personally. A beautiful, intelligent young woman was denied life saving treatment because of our backwards society while her brave husband showed tremendous strength and passion after her death. It’s a story worth hearing.
There are hundreds of stories worth hearing .. sadly none are afforded the vast amount of air time or column space that this one is.
true Liam,
what happened was a tragedy,
– but they way it was shamelessly & cynically exploited by the ‘Irish Times’ & Co. was terrible.
I used to occasionally buy the ‘Irish Times’ but never again.
Many families all over the country have lost a loved one due to medical misdiagnosis or mismanagement.
But their deaths were not cynically exploited to promote a political agenda.
@Zoe @Liam there may be “hundreds of stories worth hearing” but space and time doesn’t allow all stories to be told.
That’s why some stories are more important, because they were heard by many, created debate, touched people.
Savita’s story is one of those.
Savita’s family want justice, they are not happy with the reports so far, they have called again for people to be held accountable, they are making sure she is not forgotten.
What justice are they looking for?
@Liam I totally agree with you!
How can an Indian family hope to ever get justice in a country that turns a blind eye to child abusing Roman Catholics?
It is a political matter, Liam, as politicians have had to decide how to amend the Constitution in line with the directive from tthe EU and the referendum vote in favour of a suicide clause. I just wish the legislation had been widened to include Fatal Foetal Abnormalities and risk not just to a woman’s life but also her health.
@ Silver Fern, yes some stories are more important. And they come to represent more than the individual involved either because others suffered in similar circumstances or because change occurred on the back of the story.
It would be great if every individual’s story could be heard but unfortunately they can’t.
The difference is This woman probably died because she was left there pregnant carrying a baby that the medics knew was no longer viable with life but had the potential to cause sepsis in its mother which it did. Sepsis always carries the risks of death . Action is a massive factor in the outcome . Staffing levels have to be looked at as well as one person can not do two jobs or even three people’s !
I apologise in advance if this sounds cold but is any one else fed up of hearing about this story.
Well considering a young woman died and her death was preventable, until such a time that there are measures put in place to ensure that this doesnt happen again, it is important to keep this story in the public’s mind.
Fox Trot, you are not only cold hearted but gratuitously unpleasant. You could simply have ignored this article and avoided posting a comment but instead yiu selected an article about a woman whose tragedy has upset many in this country, to do this. It is just that yiu lack empathy and a sense of recognition of the significance of this tragedy.
In time to come, you may recognise what this sadness is about. If not, that will will be a shame.
Please allow people the dignity and respect of this sad occasion. Thank you.
Fox trot why don’t u just ignore every Savita article seen as your so sick of it all? And why don’t you just use your real name?
Why do you want to know his or her name? What do you benefit by it? Other than a means to track him / her down over Facebook?
Think its time that this country started putting its people first. This was a life that could of been saved. May she rest in peace
Can’t believe its been a year since this happened, that man should be spending Christmas with his wife and child soon. But because of the backwardness and ineptitude of this country he can’t do that.
Rules on the immediate treatment of Sepsis have been brought in. Unfortunately No help for Savita
The backwardness and ineptitude of the HSE more like.
Given that Praveen Halappanavar is Hindu he should be celebrating Diwail, on the 3rd of November, the celebration of the Hindu new year and the Goddess Lakshmi, with his wife.
@tom… They can have all the rules and guidelines in the world, but if they don’t pick it up, it won’t make any difference. This woman didn’t have her basic obs checked until it was already too late.
Hindus don’t do Christmas.
How many people attended………
@margaret… Thanks to commercialism, their kids do.
It took this woman from another country to bring about some change which in my view doesn’t go far enough. We should be ashamed of that fact. Thanks to this ladies husband this was brought to the public’s attention. I fear if this was a Catholic Irish woman we would not have heard a thing.
And ironically enough, back in India, her hospital care would allegedly be far inferior to what she should’ve expected to get here.
I’m pro choice but i’m a little uncomfortable that a woman’s unfortunate experience is being used like some kind of marketing material. Before the whatabouttery starts, It’s not as bad as the disgusting stuff the anti-abortionists come out with, but there’s still something a little opportunist about it that makes me cringe.
Exactly… they turned her death in to a political football.
Easily avoided deaths like the one of Savita are always due to a political choice, in this case, the political choice of not angering the pro-foetus people in Ireland by not legislating on something that should have been legislated about decades ago.
Savita died because a number of political choices.
Have to agree. This lovely woman got lost somewhere in the middle of all the lobbying.
RIP and peace to her family and friends, a year already oh my!
It is a fine and good thing to pat tribute to Savita’s short life and to remember her. The organisers are to be commended for this.
I agree I was pregnant when savita died and it made my pregnancy very worrying … Rip … X
when somebody dies your immediate thought is your own and your babies well being?
No my point was that people’s confidence in our health and in particular maternity services are placed under question … I was so saddened to hear about this ladies death but also I was in the same position as her pregnant and at the hands of the same people who had failed her !!!… My heart goes out to her husband , family and friends … Rip x
Of course you would be worried Denise, any woman would.
Her death was completely preventable. I don’t agree or disagree with abortion but I don’t think the church should have any say in the matter. Had this not been a ”catholic country” as she was told by the people who were treating her she would still be alive. Screw your Catholic country shit and save her life. Doctors should act how they see fit not how the church sees fit. RIP Savita. Her tragic story makes me sick to the stomach!!!
Really Tara? The doctors missed the sepsis not the priest… but dont let the facts get in the way of a good rant…
what happened Savita had nothing to do with being a ‘catholic country’ – despite this being reported in media headlines, all over the world.
Subsequent medical investigations, brought to light the misdiagnosis, of the severity of Savita’s condition. She was not properly monitored, & there were several warning signs on her medical chart, that were not followed up on properly.
the Irish Times only highlighted the ‘catholic country’ bit, because it suited THEIR agenda – but they played down the rest of the relevant facts, of this tragic case.
A dying foetus given precidence over a dying woman because removal of a dying foetus from a dying woman is against a “pro-life” law. Savita wasn’t the first and unfortunately, due to anti-woman laws, I doubt she’ll be the last.
Tara well said totally agree. Zoe you’re a broken record.
I’m sure if they had terminated the first time she asked they would have found the sepsis in its earlier stages and been able to treat accordingly and much quicker therefore its much more likely that he would be still here today!!
If she died from some other ailment, and not from complications resulting from a miscarriage, no one would know her name. Its just an unfortunate case where pro life and pro abortion jumped on the band wagon. We. Are a nation of hypocrites where few feel for her family. Just find a cause, and no real empathy
@ Peter, if you only knew.
Sad.
One thing I noticed is that the UK media suddenly stopped reporting the Savita story when the results of the inquiries were published yet they were all over the initial spin.
agree,
the media have been crucial in this story.
What an embarsesment to Ireland.If there is a God there,may she rest in peace.
The use of soya products in India culture particularly for vegans seems to be a missing factor in this tragic story. COL (Retired) Don M. Huber, a former Emeritus Professor at Purdue University sent a letter to the USDA warning of a new pathogen, unknown to science, “…that appears to significantly impact the health of plants, animals, and probably human beings. Huber’s letter was made available to Tom Vilsack well before the USDA’s recent decision to deregulate GE alfalfa, meaning that the USDA deregulated GE alfalfa even after being made aware of this severe threat to human and animal health. Read it here:
http://americannutritionassociation.org/newsletter/gmo-ties-animal-disease This wheatalge is still on the Irish market and is being used by farmers despite countries like France banning it from its markets.
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