The HSE has once again revealed its inhuman face, after deciding not to fund a life-saving drug for Cystic Fibrosis (CF) sufferers.
The drug in question, Ivacaftor/Lumacaftor (commercial name Orkambi), was developed by American pharma company Vertex and approved by the U.S. Food and Drug Administration (FDA) for treatment of CF.
The efficacy of the drug has been proven in two separate clinical trials, as well as showing a good safety profile. Orkambi is effective in improving pulmonary function in CF sufferers, plus other benefits.
The results of the clinical trials for Orkambi showed that the compound maintained the patients’ lung function stable for over two years of treatment, significantly lowered the risks of acute exacerbations, and also helped to improve the patients’ weight.
Michael W. Konstan, MD and principal investigator of the study, said “These data suggest that the benefits of lumacaftor/ivacaftor are sustained through 96 weeks and indicate that the medicine may modify the progression of CF lung disease by treating its underlying cause.”
The drug was green lighted for mass production on July 2, 2015, and it is currently standard therapy for CF treatment in most civilized parts of the world, as it targets the root cause of CF, rather than its symptoms.
Nevertheless, and despite the obvious benefits, the HSE penny counters with unjustifiably large salaries here in Ireland have deemed the treatment ‘expensive,’ and not ‘cost-effective,’ thus effectively condemning CF sufferers to an agonizing death at the stroke of a pen.
Backlash against the HSE has been swift, and words like ‘disgraceful’ and ‘heartless’ have been liberally used against a crumbling organization run by someone who is way out of his depth.
CF Ireland has released a statement saying it “will fight this decision” and that it is “angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill”.
The statement continued: “We call on the Minister for Health, Simon Harris TD, to use his ministerial powers to intervene to ensure that Orkambi is made available in Ireland for the 550 patients who stand to benefit from this life-lengthening drug.”