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

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".

Campaigners at a Respreeza funding protest in February


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