Irish cystic fibrosis patients and their families were celebrating yesterday, after vital drug Orkambi was finally approved by the Government.
Orkambi provides relief to those suffering from CF, but up until now, it was not available in Ireland as the HSE could not afford it.
The initial cost of providing the drug was estimated to be €159,000 per patient per year. However, yesterday, a deal was struck between the HSE and the makers of the drug, Vertex, according to The Journal.
It will be made available to patients from next month, alongside another drug, Kayldeco.
Many CF patients have been campaigning for years to have the drug introduced, including Jillian McNulty. She had been on a trial of the drug for the past three years and said it improved her quality of life no end.
She said the drug has “completely transformed her life.” Prior to taking Orkambi, Jillian spent months in hospital every year and had a “poor quality of life.” But since being put on Orkambi, she is much happier and healthier.
“I’ve got so much energy, I very rarely have infections, I can just keep going like a normal ‘healthy’ person”, she said.
In 2016 Jillian made an impassioned plea in a YouTube video for the drug to be introduced. She said prior to taking Orkambi, her lung function was so bad that at times she couldn’t wash her hair by herself, stand in the shower or walk the shortest of distances as she would become breathless.
Jillian said she was “on a downward spiral, my body was giving up” and she feared she would die. Even getting out of bed would trigger a coughing attack and breathlessness.
After a month on Orkambi, Jillian saw a massive improvement in her health and wellbeing. Her lung function is stable, she doesn’t need to use her nebulizer as frequently as before and she no longer needs rounds of antibiotics to fight infections.
— jillian mc nulty (@jilli09) April 11, 2017
When the announcement was made, an emotional Jillian uploaded a video to Twitter, saying: “I’m just so so happy that CF sufferers finally have access to Orkambi.”
Cystic Fibrosis Ireland has also welcomed the news, commending all those who had campaigned for the introduction of the drug.
“The development is especially welcome, coming as it does during Cystic Fibrosis National Awareness Week, with 65 Roses Day taking place countrywide this Thursday,” a spokesperson for the organisation said.
Health Minister Simon Harris said: “I want to recognise the work the HSE has put into these negotiations over a long period and I thank them for that.”
