'I'll never give up the fight'

Marisa Reidy, whose daughter Hanna (6) has Cystic Fibrosis, said she's devastated by the HSE's refusal to fund life-altering Orkambi

A North Kerry mother left devastated by the HSE's decision not to fund the life-changing cystic fibrosis (CF) drug Orkambi has said she spent most of last Sunday in tears having discovered the news on social media.

Former Kerryman journalist, Marisa Reidy - whose six year old daughter Hanna has CF - says she is utterly devastated and heartbroken by the decision, and is equally disgusted with how the information was leaked to a Sunday newspaper rather than by way of an official announcement.

Marisa, who has campaigned rigorously for Orkambi over the past year, says that she is finding it extremely difficult to accept that a drug which has been proven to improve the quality of life for those on trials will not be funded by the HSE because it is deemed not to be cost effective.

"I woke up on Sunday morning to my phone hopping. People were texting me saying they were so sorry about the decision and expressing their anger," Marisa said. "My Facebook was crazy with people sharing the newspaper exclusive announcing the news. It was a devastating way to learn the news and I just cried and cried and cried," she said. "This was never the outcome I expected."

Marisa said her heartbreak soon turned to anger, however, having had discussed the issue with local TD Brendan Griffin just two days earlier.

"Brendan sent me a text with a link to a debate that he initiated in the Dáil only on Thursday. In it, he was assured that negotiations were still ongoing between the HSE and the drug manufacturer, which both he and I took to be the case," Marisa said. "He was equally dismayed by Sunday's newspaper report and told me that the information he received during the debate was clearly misleading.

"This is what is so disgusting and offensive. We have some great people trying to fight our corner and if they can't even be given the truth then what chance do we have? Are you seriously telling me that the Department of Health didn't know on Thursday what the Sunday Business Post knew on Sunday? That's absolute rubbish and that's what I'm sick of - the lies and the bull."

In making its decision - which Health Minister Simon Harris insists has not yet been officially relayed to him - the HSE said Orkambi did not deliver enough benefits to justify its €159,000 per annum price tag. Marisa takes huge issue with these findings.

"We in the CF community know that Orkambi is not a cure and will not work for everyone who it is supposed to target. We're not naive or stupid. But our argument is that is has been proven to massively increase the health benefits of many people who have been on trials so why not give everyone that same chance at life," Marisa said.

"Unfortunately there will be cases where Orkambi won't work, and of course that will be devastating, but surely everyone is entitled to try. What really makes me angry is the amount of money that is squandered by our government at the expense of my child's future. How am I ever supposed to accept that? Do these decision-makers have any clue how cruel it is to dangle this drug in front of us and after years of development and then tell us we can't have it. It's a nightmare."

Not willing to take no for an answer Marisa is set to join hundreds of other campaigners at a mass protest to Dáil Éireann next Wednesday, December 7, at 1.30pm where she is hoping to meet with local and national representatives and have her say. She is encouraging others to show solidarity and help give her daughter, and so many like her, a fighting chance.

"There is absolutely no way we're rolling over and accepting this. Not in a million years. No one plays God with my daughter's future. Over my dead body."


Brassil slams HSE decision on life-changing CF drug

Kerry Fianna Fáil TD John Brassil has said hie is hugely disappointed by HSE's decision not to fund Orkambi for CF patients and called on the Government to reverse the policy.

Deputy Brassil - Fianna Fáil's spokesperson on Primary Care and a pharmacist by trade - said that the decision by the HSE to reject the use of Orkambi due to cost implications is both extremely disheartening to people living with Cystic Fibrosis and short sighted from a health point of view.

"Over the last year, CF sufferers have been waiting on this decision, and the news over the weekend will prove to be extremely painful for those who hoped to begin using Orkambi if approved," he said.

"The facts are quite clear. Orkambi works. The clinical trials have shown that it can increase a person's lifespan and also improve their quality of life," said Deputy Brassil.

"In October, my party leader, Micheál Martin raised this issue in the Dáil. At the time, he provided a solution," he said.

Deputy Brassil said that rather than simply rejecting the drug as too expensive the HSE should look for cheaper ways to source it.

"The HSE should look to immediately begin negotiations with health services in other countries in the EU, and elsewhere, to potentially club together and bulk-buy Orkambi at a lower price," Brassil said.

"Longer term, the HSE must also ring fence funding for medicines of this nature. It is wrong, and unconscionable, to say to a person that we cannot justify the cost of keeping you alive longer or giving you a better quality of life," said the Kerry Deputy.

"This issue won't go away, and nor should it. It's too important to too many people, and I, and my party, will continue to pressure the Government to deliver this important, life changing drug," concluded Brassil.


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