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.
CSL Behring ended that administration arrangement some time after the state refused to reimburse Respreeza. However, it is continuing to supply the drug free of charge, estimated at €84,000 per patient per annum, pending a further clinical trial in 2018 to determine its long-term efficacy.
Yesterday, the Alpha-1 Patient Action Group, supported by the Alpha One Foundation, urged both sides to end the deadlock over the supply of Respreeza to the 21 patients who had been receiving the therapy. Respreeza is the only therapy shown to slow the progress of genetic emphysema.
Geraldine Kelly, CEO of the Alpha One Foundation, said CSL Behring and the HSE need “to act urgently to resolve this crazy standoff that has left 21 Alpha-1 patients being offered the Respreeza therapy free of charge, but with no way of receiving it”.
“This is a dreadful situation which has the potential to impact seriously on patients’ health and well-being, not to mention the huge stress and anxiety being caused to them and to their families,” Ms Kelly said. She called on Health Minister Simon Harris to “act as an honest broker” if no agreement is reached between the HSE and the drug company “before the health of even one patient begins to seriously deteriorate”.
Another 40 patients could also potentially benefit from Respreeza and Ms Kelly said that this also needs to be addressed.
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