'My golden years will be wiped away... I'll just die' - Patients beg HSE to reconsider drug decision
People suffering from a genetic condition which affects lungs say they are begging the HSE to reconsider funding a drug which they claim will prolong lives.
Alpha-1 can lead to the development of emphysema which causes shortness of breath.
The HSE have decided not to reimburse Respreeza Therapy which is already available to patients in 12 other EU countries.
Orla Keane, who suffers from Alpha 1 said her "hopes and dreams" will be gone if the drug is taken away from her.
"My golden years will be wiped away. I'll just die," she said.
Ms Keane said that prior to going on the drug she couldn't go to a restaurant without getting a coughing fit. But when she was on Respreeza she "hadn't a sniffle".
"I couldn't talk or laugh at a table, it was that bad. The drug worked. I hadn't a sniffle and I'd never been in hospital."
Anne O' Rourke (54), who also suffers from Alpha 1, begged the HSE to reconsider their decision.
"It's such a struggle when you get up in the morning. It's very depressing. You just can't breathe. I feel very bitter. If they were in my situation and I was one of their family would they let them suffer? I beg them to reconsider," she said.
Chair of the Alpha-One Foundation, Gerry McElvaney, has urged the HSE to "pull back from the brink" and approve Respreeza.
He said: "We ask all parties involved to please put patients first.
"We know Respreeza works in slowing the progression of emphysema which can have a hugely debilitating impact on people's lives.
"It is not too late for the Minister for Health to reconsider this decision in the best interests of patients. This therapy is the only one available that has been shown to work in patients with emphysema caused by severe Alpha-1."
In a statement the HSE said the decision to to reimburse the treatment was taken after an intensive process.
The statement acknowledged that the decision will be upsetting to the patients and their families.
"However it is of the utmost importance to recognise that the HSE Drugs Group who reviewed the effectiveness of the drug did not consider the evidence for the clinical benefit of human alpha-1 proteinase inhibitor (Respreeza, licensed for the treatment of alpha 1 antitrypsin deficiency emphysema), to be sufficiently strong in the context of the proposed cost and budget impact."
Professor Michael Barry, Head of the National Centre for Pharmacoeconomics (NCPE) said: "We know this is a difficult time for patients who have been affected by this decision. However the cost effectiveness of this drug has not been demonstrated following submissions from the manufacturer.
"For the HSE the affordability of new medicines is a real challenge due to the extraordinary prices that are increasingly being proposed by drug manufacturers.
"Each and every application to have a new medicine included on the Reimbursement List is considered carefully in a transparent manner. The HSE has to consider the wider population and needs to manage the full range of health services to all of the other patient groups within the finite resources at its disposal.”