The drug ‘Respreeza’ used to treat Alpha 1 antitripsan deficiency; in those who have developed emphysema; according to the HSE and CSL Behring, is to be made available once again and will be guaranteed indefinitely to the 19 Irish people, latter currently battling with this rare disorder.
For almost three years patients have had to live with uncertainty with regard to the supply of Respreeza, latter which had given them a much improved quality of life for the previous 11 years.
Alas, the reintroduction of this drug by the HSE comes to late for Nenagh, Co Tipperary native Marion Kelly, one of two people who passed away on December 1st last year; shortly after the trial of this potentially life-saving medication was withdrawn.
Marion, aged just 53 year, a mother and grandmother, was one of 21 patients countrywide who had taken part in the Respreeza trial for this rare lung and liver disorder.
The death of Marion, came just a fortnight after she had made a desperate plea for help on social media, telling of her fears for her future existence after the government and the HSE had decided to remove the Respreeza drug from dependant patients.
There still remains a massive question mark over why six months free supply of the drug was kept in storage in Dublin, with the HSE refusing to administer it at a cost of €6,000.
The drug is understood to have been withdrawn by the HSE, following advice from the National Centre of Pharmacoeconomics, latter who decided it did not “represent value for money”, thus refusing to reimburse the drug company’s annual €80,000 invoice.
To put this drug withdrawal exercise into full context; the Government spent over €505,911 travelling to the recent Offaly Ploughing Championships; transporting nine ministers, 50 agencies, one Taoiseach and some 370 civil servants, over a four day period; each to pay token homage to a forgotten rural Ireland.
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