Patients are ‘shattered’ at HSE’s decision on lung drug

PATIENTS have described as ‘shattering’ the news that ‘life-changing’ lung disease drug Respreeza has been refused funding from the HSE.

Resprezza is used to treat Alpha-1 or genetic emphysema, a rare degenerative lung condition and costs over €80,000 per patient per year.

Earlier in the year the National Centre for Pharmaeconomics recommended against funding for the medicine. The HSE yesterday announced it is to heed the NCPE’s recommendation, a move that will likely end the supply to 21 patients and prevent a further 40 patients trying to access the drug.

Yesterday afternoon, CSL Behring, the drug’s manufacturer, said it had not been informed of the HSE’s decision. CSL Behring has provided Resprezza to 17 patients in the Republic and four patients in the North since 2006 on a ‘compassionate use’ basis. CSL Behring said yesterday it had been committed to ‘exploring all possibilities to get this important treatment reimbursed for patients’.

Patient and member of the Alpha-1 Action Group Jonny Hannan, 67, said the announcement would lead to an inevitable shortening of his life.

‘This is shattering news for us,’ he told the Irish Daily Mail.

‘It means going from being reasonably fit, reasonably healthy, probably to going back to being hospitalised three or four times a year, having reoccurring chest infections and definitely shortening my life by any number of years.’

The HSE acknowledged the decision would be ‘upsetting’ to those affected by the condition but concluded that the HSE Drugs Group did not consider the clinical benefit of the drug to be strong enough to warrant the proposed cost and budget impact.

Commenting on the announcement yesterday, Professor Michael Barry, director of the NCPE said: ‘The HSE has to consider the wider population and needs to manage the full range of health service... within the finite resources at its disposal.’