Mallow man feels he has been ‘thrown on the scrapheap’
‘I’ve been thrown on the scrapheap’
A MALLOW man has said he does not know what the future holds for him after trials of a drug he was taking to combat the effects of a chronic lung condition ceased this month.
John Hannon, who took his last infusion of the life-saving drug Respreeza this week, said he felt that he and the other patients who had been taking the dug had been “cast aside as if we don’t matter anymore”.
“I have have been on this drug for almost 11 years and it changed my life immeasurably. I went from being semi-invalided to almost leading a normal and healthy life. But I feel this morning that I am almost being thrown on a scrapheap,” Mr Hannon told Patricia Messinger’s C103 Cork Today show.
A MALLOW man who has been taking the life-saving Resprezza drug for more than a decade to combat the affects of the chronic lung condition Alpha 1 antitrypsin deficiency said he feels that he has been “thrown on the scrapheap” after taking his final infusion of the drug.
John Hannon (68) was diagnosed in his late 50s with the genetic condition, which led to him developing 80pc emphysema and repeated lung infections and regular hospitalisations as well as a warning that he might not see his 60th birthday.
Last month Mr Hannon and 20 other patients across the island of Ireland, 17 of whom live in the Republic, were told that the drug which slows down the condition, would no longer be available to them from the start of this month.
On Tuesday a clearly emotional Mr Hannon, who has been using the drug on a clinical trial basis, told Patricia Messinger on her C103 Cork Today show that it was like “the end of an era” after taking his final transfusion of the drug.
“I have been on this drug for almost 11-years and it changed my live immeasurably. I went from being semi-invalided to almost leading a normal and healthy life. But I feel this morning that I am almost being thrown on a scrapheap,” said Mr Hannon.
“I feel we have been let down by our country, by the drug company to whom we have supplied information that will provide them with lots of money and hopefully in the future help other patients. But for us patients who went on the trial in 2006, we have just been cast aside as if we don’t matter anymore,” he added.
Patients have battled with the HSE and Minister’s for Health to reach an agreement with the CBL Behring, the company that manufacturers the drug, on its future supply.
However, Mr Hannon told Ms Messinger that there remained a huge void between the amount the company was willing to supply the drug for and the sum of money the HSE was willing to pay for it.
“It appears that no party is prepared to instigate talks. Leo Varadkar paid lip service in the Dail two weeks ago but I ask that maybe he insists that the company and the government look after the patients that have given their lives to the country,” said Mr Hannon.
“At 68-years-of-age I feel that I should be enjoying retirement instead being on programmes such as this literally begging for my life. This has taken its toll and a number of patients are feeling unwell. It is the stress of the whole thing. You can hear in my voice that I am emotional because I don’t know what the future holds.”
He said that Minister for Health Simon Harris had announced the government was putting together a care package for those coming off the drug. However, Mr Hannon said it was his understanding that this was merely another survey to gauge the impact that coming off the drug would have on patients.
“They are using our bodies yet again to get more information from us, but give us nothing. We feel that we have been used like animals in a laboratory and now that we are no longer any use to them we are being used in another guise as this care plan is about finding out what it will be like coming off the drug. That is an insult to us,” said Mr Hannon.
Asked where does he go from here, Mr Hannon replied “I don’t really know”.
“I’m certainly not going to sit down and die. I’m going to fight this as best I can,” he pledged.