Patients without lifesaving drug after standoff

Patients with genetic emphysema, caught up in a standoff over who should pay to administer a vital therapy, mounted a vigil outside HSE HQ yesterday as it met with the drug’s manufacturer.

The patients, who have a progressive disease known as Alpha-1, are entering their third week of not having access to Respreeza, because neither CSL Behring nor the HSE is willing to pay the cost of distributing and administering the therapy, estimated at about €120,000 per annum.

It means that the drug is sitting in a warehouse while patients forego therapy. The HSE requested to meet CSL Behring in mid-October, but the meeting did not take place until yesterday. Last night, the HSE was not commenting on how the meeting went. However the HSE has previously accused the drug company of “manipulating” the patients in its own interests, as it had administered the drug free of charge while patients took part in a clinical trial and then under a compassionate-use programme.