HSE refusing to finance life-changing medicine MALLOW MAN SAID HIS LIFE HAS BEEN TRANSFORMED BY NEW DRUG
A NORTH Corkman suffering from emphysema has compared his situation to that of someone on death row as he faces into the prospect of a life changing drug being no longer available to him because of a disagreement between the HSE and its manufacturer over the price.
Johnny Hannon (67) from Mallow was diagnosed in his late 50s with a genetic condition called Alpha 1 antitrypsin deficiency, which led to him developing 80pc emphysema and repeated lung infections and a warning that he might not see his 60th birthday.
Speaking on the Neil Prendeville Show on Cork’s Red FM, Mr Hannon explained that Alpha 1 antitrypsin is a protein produced in the liver that protects the lungs from environmental damage such as cigarette smoke which accounts for 90pc of emphysema cases.
“I was diagnosed with 80pc emphysema in 2002 despite having never smoked a cigarette in my life,” said Mr Hannon who told how he was then put on a two year clinical trial for a drug called Zemaira in 2006 to help combat the effects of being Alpha 1 antitrypsin deficient.
“My health started to improve during the two-year trial and then we got a two-year extension and my health continued to improve. The drug company (US pharmaceutical CSL Behring) decided to continue with the trial on compassionate grounds,” he said.
“They have done that the last ten years and my life has been transformed”.
But last year, Mr Hannon and the other 300 people diagnosed with the condition in Ireland learned that the drug, now called Respreeza, had been approved by the European Medicines Agency and was now being put on the market.
CSL Behring put users on notice that by September 2016 they would be ceasing the compassionate supply of the drug.
“They’ve been extending it month by month since then up until next month. But it’s almost like being on death row where you are expecting to be executed tomorrow and then you get a reprieve the night before,” he said.
Mr Hannon said that CSL Behring have indicated that the drug will cost €84,000 plus VAT per annum per patient but the National Centre for Pharmoeconomics, which assesses the cost effectiveness of drugs has said it is only prepared to pay €45,000 per annum for the drug.
He said Fianna Fail spokesman on Heath Billy Kelleher brought himself and other sufferers to Dail Eireann to brief TDs on the benefit of Respreeza and they were able to see how it had improved his life compared to a woman they met who was not on the drug.
“We would hope CSL Behring and the HSE would sit down and thrash out a deal but we are being kept totally in the dark and that makes it difficult” said Mr Hannon, who said it was ironic the state was willing to fund tests to detect the condition but not pay for a drug to treat it.
The HSE said its Drugs Group had recommended they not pay the €84,000 being sought by CSL Behring for Respreeza and the company now had 28 days to make representations to the HSE regarding that decision and that process was ongoing.