Opposition leader Micheál Martin is to request a meeting with Health Minister Simon Harris to determine if any efforts are being made to ensure patients with genetic emphysema can continue to access a vital drug.
The Fianna Fáil leader met yesterday with Alpha 1 patients and their family members in Cork, where they spoke about their fears if the drug Respreeza is withdrawn.
Two women with Alpha-1 antitrypsin deficiency, a disease that can cause severe lung and liver damage, died late last year when the drug was unavailable, as the HSE and manufacturer CSL Behring rowed over who should pay the costs of administering it.
Less than 24 hours after the death on December 1 of the second woman, Marion Kelly, aged 52, from Tipperary, the HSE backtracked and agreed to cover administration costs.
Ms Kelly’s sister and brother, Niamh and Liam, and her stepmother Lelia, were among those to attend yesterday’s meeting.
Mr Martin said: “In my view, it is unconscionable that patients face so much insecurity about their future.”
He said it is “very sad that people who’ve been on medication for so long are now in a very insecure position”.
He said the six patients and their spouses present at yesterday’s meeting outlined to him how their health had deteriorated during a seven-week period last year when the drug was unavailable.
The drug had been available for a decade to 21 patients who took part in a clinical trial and subsequently under a compassionate access programme, as CSL awaited a decision on State reimbursement, which the HSE refused. Mr Martin said there is an obligation on the HSE and CSL to look after the patients under the Helsinki Declaration.
The declaration says at the conclusion of research (i.e. the trial), patients are entitled to access interventions identified as beneficial.
Mr Martin, who was accompanied to yesterday’s meeting by Fianna Fáil health spokesman Billy Kelleher, said he will be seeking to meet with Mr Harris this week.
Johnny Hannan, aged 68, from Mallow, Co Cork, said Mr Martin had agreed that “nothing short of reimbursement” is acceptable, and that he has “given a commitment to do what he can” to ensure patients can continue to access Respreeza.
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