No talks are under way with the manufacturer of a drug that threw a lifeline to patients with genetic emphysema, despite a commitment from the health minister to the family of a woman who died while the drug was withheld.
Marion Kelly, aged 52, from Tipperary, died on December 1, two weeks after the death of Anna Cassidy, aged 68, from Donegal.
Both woman had Alpha-1 antitrypsin deficiency, a disease that can cause severe lung and liver damage. Both had been on Respreeza, the only drug shown to slow its progression.
The women died during a time when the drug was unavailable as the HSE and manufacturer CSL Behring rowed over who should pay the administer costs. Less than 24 hours after Ms Kelly’s death, the HSE backtracked and agreed to cover administration costs.
Lorraine Doherty, Anna’s daughter, said her mother died “gasping for breath”.
Johnny Hannan, aged 68, from Mallow, Co Cork, who has Alpha 1, and who is spokesman for the Alpha-1 Action group, said Health Minister Simon Harris gave a commitment to the Kelly family, at a meeting on January 29, to re-engage with CSL Behring.
Mr Hannan said Mr Harris had engaged in “lip service”.
Both the HSE and CSL Behring confirmed to the Irish Examiner that there are no talks ongoing regarding State reimbursement of Respreeza — the HSE turned down the reimbursement application in April 2017.
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.
The HSE refused on cost grounds, and patients, other than those who take part in a second trial due to get under way around June, will lose access this year. The company has said it estimates about half of the patients will partake in the new trial.
The HSE said it is “open to discussion” if CSL submits a new reimbursement application with a “significantly” improved price offer, but said there is “no expectation that will happen”.
The Department of Health did not respond to a request to explain why Mr Harris had given a commitment to the Kelly family that there would be engagement with CSL.
Mr Hannan said it was 18 months before a decision was reached on the initial reimbursement application and Alpha-1 patients did not have time on their side.
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