'It's almost like being on death row': Cork man's plea for life-saving drug
Mallow man Johnny Hannan spoke today about his hope that he will be allowed to continue his use of a life-saving drug, .
A decade ago, Johnny was in hospital three to four times a year and the non-smoker developed 80% emphysema.
"It was a horrendous five years to be quite honest," he told Colm Moore on the Neil Prendeville Show on Cork’s Red FM.
Johnny was put on a clinical trial as he has a condition called Alpha 1 antitrypsin deficiency. This is a hereditary disease that skips a generation.
He began using a drug called Repressa to treat the condition.
"I am a totally different man. It has transformed my life," he said. He hasn’t been admitted to hospital since the trial began and the drugs have made a remarkable difference to his life.
That trial came to an end but the HSE will not fund the drug.
After the trial the company, CSL Behring, allowed participants to remain on the drug until the end of April 2017 on compassionate grounds.
After this the drugs will cost each patient €85,000 per year.
Without Repressa, Johnny is worried his life will be worse than before and he fears he will get emphysema of the lungs and die.
"It's almost like being on death row," he said. "You're expecting to be executed tomorrow and then you get a reprieve the night before.
"We're getting a month-by-month supply. We are hoping in the meantime that they are negotiating with the HSE to reduce the cost of the drug . The cost of the drug at the moment quoted to us is €84,000 a year plus VAT."
Johnny is a well-known figure in Mallow. In 2010 he founded Lookout to promote mental wellness, provide information, reduce stigma and create awareness of mental health issues.
The people whose lives he has touched have made a video calling for the HSE to fund Repressa and save Johnny's live.
"It makes me emotional but it's lovely that people feel that way about me," Johnny said.
