Patients with emphysema assured of access to disease slowing Respreeza drug
Patients with genetic emphysema have been assured of continued access to the only drug shown to slow its progression until at least the end of the year.
Johnny Hannan, who has Alpha-1 antitrypsin deficiency, a disease that can cause severe lung and liver damage, said Respreeza will be available to 19 patients until next December, or until a new drug trial starts, whichever occurs first.
It’s expected a trial will commence in the first quarter of 2019.
Patients had been fearful of losing access after the HSE refused to reimburse the drug on cost grounds last year.
Mr Hannan (68) from Mallow, Co Cork, said meetings had taken place between the HSE and CSL Behring and he understood “the vibes were positive”.
He said things began to move in the right direction after a meeting between patients and Fianna Fáil leader Micheál Martin last March.
Prior to the HSE’s refusal to reimburse the drug, Respreeza had been available for a decade to 21 patients who took part in a clinical trial and subsequently, when the trial finished, under a compassionate access programme, as CSL awaited a decision on State reimbursement.
The drug had been supplied and administered free of charge by CSL, but the company withdrew from the administration process on October 31 last as the row over reimbursement continued.
The HSE initially refused to pick up the administration costs, and for seven weeks, patients were unable to access Respreeza.
During this time, two women died within two weeks of each other: Anna Cassidy, aged 68, from Donegal, and Marion Kelly, aged 52, from Tipperary.
Within 24 hours of Ms Kelly’s death, the HSE backtracked and agreed to cover the administration costs. However, uncertainty remained about long-term access for the remaining patients.
Fianna Fáil TD for Kerry John Brassil, who campaigned on behalf of the Alpha-1 patients, said Health Minister Simon Harris had given assurances at a meeting in Government Buildings last April, also attended by Mr Martin and relatives of Ms Kelly, that the 19 remaining patients need not worry about losing access to Respreeza in the future.
“The basic line the minister gave at the time was regardless of what came out of a new trial, patients on the compassionate access programme would no longer have to worry, that they would be looked after,” said Mr Brassil.
The HSE said it was continuing to liaise with CSL Behring in relation to the long-term care of this group of patients.
“Discussions between the HSE and the company are continuing at present in relation to this matter,” said the HSE.
The HSE also said the agreement to “grant aid” the administration of the medicine for the patients is on the condition “that the company would continue to supply the medicine into 2019”.
However, the future remains uncertain for 40 other patients with genetic emphysema who were not part of the first CSL trial.
