A CORKMAN has spoken of his devastation after receiving his last dose of a life-changing drug this week.
Johnny Hannan, aged 68 from Mallow, yesterday received his last dose of the drug Respreeza, used for the treatment of chronic lung condition alpha-antitrypsin deficiency also known as alpha-1.
He is one of more than 20 patients nationwide who will no-longer receive Respreeza after the HSE announced it will not provide the drug to patients for free.
"I felt sick to my stomach, to be honest," Mr Hannan told the Evening Echo.
"To have felt so well for 11 years and to have that taken away, it's like having a bereavement in the family because you know you are heading towards an uncertain future now."
"Our Government is prepared to let us wither away and die. It was like being thrown on a scrapheap. Is that what Ireland is coming to? That we don't care about our older people?"
Respreeza, which costs €84,000 plus VAT per patient per year, was provided to Irish patients under a Compassionate Access Scheme by its manufacturer CSL Behring after clinical trials of the drug ended in 2010.
However, CSL Behring ended this programme last month.
The HSE rejected an application to have the drug provided for free in August, stating that it was unable to reach an agreement with the manufacturer.
Mr Hannan was the second person in the world to trial Respreeza when he was selected for its clinical trial.
He was diagnosed with genetic emphysema in 2003.
Before he started the clinical trial in 2006, his lungs were the same condition as someone who smoked 80-cigarettes a day, despite never smoking a day in his life.
He became so ill that by the time he was 58, Mr Hannan was told he wouldn't live to see his 60th birthday. However, after he was selected to take part in the drug’s trial, his health greatly improved.
"Within six months, it had turned my life absolutely around. It transformed my life. I went from living life as an invalid to living a semi-normal life."
The lack of a response from the Government’s about the HSE’s decision has been completely devastating, he added.
"It's frightening to think we all could be back where we were 11 years ago because of a lack of interest from our Government, a lack of compassion from our Government and a lack of compassion from the drug company."
Irish patients on Respreeza strongly felt that the drug improved their condition and almost 84 per cent reporting an improvement in general symptoms, according to Mr Hannan.
They also experienced a reduction in chest infections and hospital visits, he added.
However, this information was not considered when the cost evaluation was carried out as it was not collated by the drug company, he added.
“We really don’t know what’s next, we’ve exhausted every avenue. We just have to keep going.” “If anyone, a priest, a doctor, a garda, anyone, could intervene. We really need someone to intervene with the HSE and get them talking with the manufacturer again.”