Chronic lung sufferers call for an end to stand-off on access to ’life-changing’ drug

Chronic lung sufferers call for an end to stand-off on access to ’life-changing’ drug
Campaigners at a Respreeza funding protest in February

Patients with genetic emphysema are calling for an end to the current stand-off on what they claim is a life-changing drug.

They will hold a vigil today before the HSE meets with pharmaceutical company CSL Behring to discuss access to Respreeza.

21 patients with the Alpha 1 condition were previously on a clinical trial for the drug, before a row erupted over who should administer it.

Patients say the therapy is still available however the drug company is not funding its infusion after the HSE said it would not grant reimbursement.

The drug faces a lengthy approval period due to its cost.

In September, campaigners said that losing access to the drug meant that some patients "could be dead in six months".


More in this Section

'Significant fire' at Dublin industrial estate put out after gas main ruptures'Significant fire' at Dublin industrial estate put out after gas main ruptures

€250k Lotto Plus 2 draw won€250k Lotto Plus 2 draw won

Seizure of container load of smuggled cigarettes in Co Armagh leads to cross-border investigation Seizure of container load of smuggled cigarettes in Co Armagh leads to cross-border investigation

National Treatment Purchase Fund must be extended, Fianna Fáil say, as 200k wait for scansNational Treatment Purchase Fund must be extended, Fianna Fáil say, as 200k wait for scans


Lifestyle

Even in the drug-filled, debauched annals of the rock and roll memoir, Mark Lanegan's Sing Backwards And Weep stands out.Mark Lanegan: Drugs, Liam Gallagher and me

Donal Dineen was the man who first brought David Gray and many other emerging artists to our ears. He’s had a lower profile in recent years, but has returned with a new podcast, writes Eoghan O’SullivanDonal Dineen: Pushing the buttons on a new podcast

Is there are science to back up some of the folklore we have grown up with?Appliance of Science: If a cow sits down does that mean it will rain?

This time last year Whiddy Island in West Cork was bustling with people who had caught the ferry for the short trip from Bantry to ramble the island’s boreens as part of the Bantry Walking Festival. Not so this year.Islands of Ireland: Whiddy in the same boat

More From The Irish Examiner