A new drug could make a dramatic difference to one patient with cystic fibrosis, writes Ailin Quinlan
Most 30-somethings woke up this morning wishing they’d something new to wear to work — all Clare Meleady wants, however, is access to a new drug that could enable her to get a job.
A trained reflexologist and tai chi expert, 30-year-old Meleady has cystic fibrosis. However, she is a suitable candidate for Orkambi, an expensive new drug which could significantly improve her quality of life.
Her condition prevents the 30-year-old from working, restricts her attendance at big family events, and has even put a stay on her hopes of starting a family with Barry, her husband of five years.
Orkambi could solve a lot of those problems, but the HSE has yet to decide whether it will pay for the drug, which is expected to cost €150,000 annually per patient.
Currently there are around 1,200 people with cystic fibrosis in Ireland.
However this country not only has the highest rate of the disease per head of population in the world, but also has some of the worst types, because of the particular genotype prevalent in Ireland.
In acknowledgement of this, and of the ongoing need for better facilities for cystic fibrosis patients, Friday next will see a major fundraising campaign in which thousands of volunteers will sell purple roses nationwide to raise €65,000 for the support group Cystic Fibrosis Ireland, whose members anxiously await the HSE’s decision on Orkambi.
“Orkambi is very expensive but a lot of people in the trials have done very well and it’s been a life-changer for many people. I’d like to try it,” says the Ashbourne, Co Meath, woman, who was diagnosed with the disease at the age of 15 months. “It’d enable me to be able to work and my health would be more reliable.”
Although she tries to stay positive, she acknowledges that cystic fibrosis has a severe impact on her day-to-day life: “I cannot work, which puts a huge financial strain on our household,” she says, adding that when she got married, her disability allowance was slashed from €188 a week to just €50.
This has placed the couple under significant financial strain — Barry is a clerical worker and his salary is not huge, she says, adding that they’re currently considering whether they can continue to afford their car.
On a deeply personal level, the loss of her younger brother Paul — the only other member of the extended family to have cystic fibrosis — in February 2015, came as a huge blow to Meleady.
Paul died of heart failure. He had a condition which was unrelated to cystic fibrosis but which, because he had complications related to his cystic fibrosis, could not be treated.
“We were very close, because we both had the condition and we understood how each other felt .”
Her own condition is progressing from moderate to severe.
Although people born in the 1980s are now expected to live into their 30s and early 40s, the average age of death from cystic fibrosis in this country is 27. However, Meleady avoids focusing on the negative. Instead, she spends several hours a day exercising and practising an array of techniques to help her control her symptoms and maintain a positive attitude.
“I practise mindfulness and do meditation and tai chi and I focus on living in the moment.
“You cannot look too far into the future — I deal with the road blocks that come up. Cystic fibrosis has taught me to appreciate a lot,” she explains.
Her devoted husband and a hugely supportive family networks are among the many blessings in her life she says — as is her adored golden retriever Rupert gets her out and about: “He has given me a reason to get up in the mornings.
“The walking has increased my fitness a lot,”says Meleady, who regularly does brisk 10km hikes, often around the Phoenix Park.
Exercise “keeps my lungs clear and keeps me fit,” she says. “I set up a tai chi group locally and I try to do tai chi most days which is very good for strengthening the body and is also a form of meditations.”
She takes a cocktail of medicines — antibiotics as well as medication for digestion, bones, stomach and bowel.
Her big priority now is seeing HSE approval for Orkambi: “I’ve been really anxious for Orkambi to come out. Down the road, I’d love to start a family but with my health the way it is, it’s too risky,” says Meleady, who is on average hospitalised up to three times a year and regularly attends outpatient clinics for a variety of health problems associated with her condition.
However, inadequate staffing and resources means hospitals cannot always cope with the needs of cystic cibrosis patients, says Philip Watt, head of Cystic Fibrosis Ireland.
Ongoing staffing problems can mean delays in admitting patients, he says, while the shortage of dedicated isolation rooms for CF patients is another worry.
“In some cases there can be delays in getting treatment because of staffing shortages or lack of rooms,” he reports, adding that sometimes patients have to stay at home instead of going into hospital, while the lack of specialised staff, such as specialised nurses or psychologists, is another issue.
Orkambi, he says, has been shown to reduce hospitalisation amongst patients by about 50%.
“We probably will know in the next eight weeks — around end of May, the HSE will decide whether they will pay for the drug,” he observes.
Until then Meleady must wait and hope: “This drug could change my life — I’d have more energy, less chest infections, and maybe I would be able to work, see my friends and think about starting a family.”
In the meantime, she continues to count her blessings and fundraise for Cystic Fibrosis Ireland.
A dedicated musician, she and some friends released a single on behalf of the group some years ago, raising €6,000 for CFI.
Last Halloween, Meleady and her family raised more than €4,000 for the association in memory of Paul.
“I have a lot of good in my life,” she says.
What is cystic fibrosis?
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