Deal reached on access to Respreeza after drug withheld for over a month

Patients with genetic emphysema should have access restored, by the end of next week, to a drug withheld for more than a month in a row over who should pay to administer it.

The Alpha One Foundation, which advocates on behalf of the patients, has confirmed that healthcare company Point of Care will resume weekly infusions of Respreeza once each of the remaining 19 affected patients has been contacted and arrangements put in place.

Patients have gone without infusions since October 31 because neither the HSE nor Respreeza’s manufacturer, CSL Behring, would agree to cover the administration fee.

Since then, two patients — Marion Kelly from Tipperary and Anna Cassidy from Donegal — have died.

In the Dáil this week, Fianna Fáil TD John Brassil said a third patient is seriously ill in hospital and a fourth is deteriorating.

A fifth patient, Johnny Hannan, from Mallow, Co Cork, is back on antibiotics for the first time in almost three years.

Labour TD Alan Kelly, a neighbour of Marion Kelly, said she was “not given the best chance” [of survival] and that “the body politic and the health system are letting these people down”.

Health Minister Simon Harris said the HSE has worked “extraordinarily hard” to put in place arrangements to ensure patients can access the drug for the next six months, until a new clinical trial starts.

The drug had been supplied and administered free of charge by CSL, but the company withdrew from the administration process on October 31. The State has refused to reimburse the drug.

Foundation CEO Geraldine Kelly said they are delighted an arrangement is in place to get the drug to patients “but that doesn’t mean we won’t continue to campaign throughout the next six months to get reimbursement ahead of the trial”.

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