Ten years ago, John Hannon could hardly walk from his home to his car. Yesterday he travelled to Dublin to demand that a drug that transformed his life continues to be available, writes Evelyn Ring.
Mr Hannon, from Mallow, Co Cork, has genetic emphysema, or Alpha-1, an inherited condition which can result in lung disease. He joined other patients receiving the life-changing therapy at a protest outside the HSE’s offices in Dublin.
They want the HSE and Health Minister Simon Harris to commit to long-term funding of the drug, Respreeza.
Mr Hannon, 67, is one of 21 patients who has received the therapy for 10 years, initially as part of a clinical trial and more recently on compassionate grounds from the pharmaceutical company.
The patients put down their placards to discuss their concerns with HSE officials, who agreed to engage with the pharmaceutical company, CSL Behring, to see if a resolution could be reached.
CSL Behring also decided to continue to supply the drug to the 21 patients for a further two months.
Mr Hannon is in no doubt Respreeza works. “I would not be here today without this treatment,” he said.
HSE director general Tony O’Brien told the Oireachtas joint health committee on Wednesday that the health authority would not make a decision that was at odds with the recommendation made by the National Drugs Committee.
Mr O’Brien said the HSE would be open to further engagement with a pharmaceutical company beyond the end of an initial process. He stressed, however, that the decision was not just based on the cost of the drug.
“There is always a consideration of the financial impact but, primarily, this has been made on the basis of clinical benefit,” Mr O’Brien told Labour TD Alan Kelly.
Mr Harris, who also attended the committee meeting, appealed to CSL Behring to continue providing the drugs to the patients who had been involved in the clinical trial.
Despite continued lobbying by patients, their families and their representative organisation Alpha One Foundation, the HSE has refused to fund Respreeza.
Alpha One Foundation chief executive Kitty O’Connor urged the HSE to explore every avenue. She also called on CSL Behring to lift the two-month deadline on the supply of the drug to patients who continue to benefit from it.
Ms O’Connor said Respreeza was the only therapy to have been shown to slow the progression of Alpha-1 and was already available to patients in Italy, France, Germany, the Czech Republic, Austria, the Netherlands, Spain, and the US.
“The European Medicines Agency and these other countries see the benefit, so why can’t the minister,” she asked.
Ireland has one of the highest prevalence of Alpha-1 in the world. More than 2,000 Irish people have severe Alpha-1, according to the Irish Thoracic Society.
This article first appeared in the Irish Examiner.