'No one else is fighting for us'

The parents of a toddler from Shercock with Cystic Fibrosis are to take their fight to Dáil Éireann for the 'game changing’ drug Orkambi to be made available to CF patients in Ireland as quickly as possible under the Drug Reimbursement Scheme, writes Thomas Lyons.
Linda and Ronan Whitmarsh have two children Liam and Finn. Finn, aged two and a half years, has Cystic Fibrosis. Nurses by profession, the Whitmarshes are aware that their own son won’t be able to go on the drug until he’s a little older but want to ensure that it is immediately available to Finn when the time comes.
Mum Linda explains that Orkambi is the first drug to treat the core effects of the disease. “All Finn’s medication treat his symptoms, Orkambi treats the disease itself. It is not a cure but it treats the problems that CF causes.”
Ronan is the chairperson of the Parents of Children with Cystic Fibrosis and on December 1, the group will give a presentation in the AV room in the Dáil on this issue. The meeting has been facilitated by Sinn Féin but Linda says that cross party support is vital and all TDs have been invited. “Ireland needs to stand together for what really matters - our children’s lives,” said Linda.

Not 'cost effective’
Earlier this year, the National Centre for Pharmacoeconomics (NCPE) assessed Orkambi but didn’t deem it “cost-effective”. It’s costed at €160,000 per patient per year. The HSE is in talks with the drug’s manufacturer, Vertex Pharmaceuticals, in a bid to reduce this price.
Getting the HSE to make a positive decision about the drug is the fight that Ronan and Linda are tackling at the moment. The group is also trying to secure a meeting with Minister Harris to discuss the situation. “There is a lady in our group who’s son was on the trial. The impression the drug has had on his life, on his lung functions is remarkable. We don’t want to interfere with the discussion process between the HSE and the pharmaceutical company, we know that it is a shocking amount of money, we are just looking for a drug that we know will improve the lives of our children to be approved,” Linda continued.

In Ireland there are 1,200 CF sufferers, half of those have the gene that Orkambi treats. One of the options being considered by the State is to group with other countries to negotiate for a price.
Finn’s condition has had huge implications for his overall well-being since his birth. “He was very unwell in the first year and a half. He has had three pneumonias and been hospitalised for all of them in Drogheda and Temple Street. He has had two lobe collapses, three bronchiolitis and has needed oxygen treatment.”
Linda believes that Orkambi would reduce the number of infections Finn would endure and may prevent him needing a transplant in the future.
Finn, like many boys his age, loves Toy Story, playing with his Lego and is very mischievous, except that he battles for his survival every day against one of the deadliest genetic conditions in Ireland.
“He is just like a normal toddler. If you look at him you would not know the destruction that this disease has on him and on our family,” said Linda.
Once when Finn was just eight weeks old and very ill in hospital, Linda found herself in a dark place to where she never wants to return. “I actually envisioned a funeral at home. I thought where I was going to put the coffin. I vowed that I would not let that feeling get to me again.”
Linda says that her child may have CF, but the disease does not have the family.
“It was devastating when the doctors told us our son had this life shortening illness. I hate that I have to be so public about my feelings, but no one else is fighting for us, fighting for Finn. I don’t want to live my life with regrets, I want to say that I did everything I could for Finn to keep him well. This is just another hurdle to keep fighting.”
As Finn approaches his third birthday, Linda and Ronan will be celebrating another addition to the family.
“I am not letting this disease dictate our lives. I wanted another child and I know that I would regret not having another child more than I would having another baby with CF. You have to get on with life. Finn’s condition shows us how precious and fleeting life really is.”